- Pheochromocytoma
- Primary adrenal Cushing’s syndrome
- Primary hyperaldosteronism (Conn’s syndrome or aldosteronoma)
- Incidentally discovered adrenal masses (adrenal “incidentalomas”)
- Adrenocortical carcinoma
Patient Experiences Blog: Endocrine Surgery UCLA, Reviews, Comments
Reviews and comments about thyroid, adrenal and endocrine surgery at UCLA
Patient Experiences Blog: Endocrine Surgery UCLA, Reviews, Comments 
It’s all about Dr. Harari!!!!!! She performed my adrenalectomy. She is a professional of the highest quality. Her knowledge and patient interaction is second to none. She takes more time with patients then I have ever seen in my life, as well as makes sure that you are fully educated and comfortable.
She surrounds herself with the most wonderful staff who are caring and understanding. I must say they even have the greatest sense of humor!
If you have any issues whatsoever, see Dr. Harari. Not only will they fix you, they will make it most pleasant in every way possible!
I am available to communicate with any patient who will be going under Laparoscopic Adrenalectomy with Dr Yeh and Dr.Levihits and has some questions to make a decision.
I am available to communicate with any patient who will be going under Laparoscopic Adrenalectomy with Dr Yee and Dr.Levihits and has some questions to make a decision.
I am a 56 years old female. I needed to have an adrenalectomy because my adrenal gland was the size of my heart when its suppose to be the size of a walnut. I had been to two other surgeons who told me they could not preform the operation, it was to much for them. The second surgeon told me to go to an adrenal specialist. We found Dr. Harari at Ronald Reagan Medical Center. The moment I met Dr. Harari I knew I was in the right hands. Her incredible knowledge of the human body and of the medical field are amazing. Her bed side manner is top notch. I was very nervous about this surgery because my adrenal gland was touching and invading my veins, liver, stomach and main artery and also realizing that other doctors thought it was a difficult operation was making me a nervous wreck. After a five and a half hour operation with the help of Dr. Kaldas, Dr. Harari removed the entire adrenal gland in one piece with no damage to any other organs in my body. Both doctors explained to me after the surgery how difficult it was to remove the sticky, large adrenal gland. I am so grateful for the expertise of the doctors and staff at Ronald Reagan Medical Center. I am thankful for their professionalism and their thirst for more knowledge. When I was in the presence of these doctors, I honesty felt like they were the smartest people I have ever met. It was a pleasure to meet Dr. Harari and I know you will feel the same if you met her. For anyone who needs surgery I hope this posting makes you feel more comfortable. They really know what they are doing at UCLA. Bless those of you who are ill:) I WISH FOR YOU A SPEEDY RECOVERY:)
Nora:)
Hi, I’m a 37 yo female who underwent right adrenalectomy with Dr. Yeh. Here’s my story:
In 2008, during an MRI, a right adrenal tumor of 2,5 cm was found by chance, but I was told not to worry about it… so I kind of forgot about it. Then again, because of abdominal pain an MRI was carried out in 2014, and voila’ the same old tumor showed up, this time with a size of 3,8 cm. From the images it still looked benign, and tests proved it did not produce any hormones. However, due to its size reaching the 4 cm threshold, I was recommended to have it removed. Luckily enough, I was also recommended to go see Dr. Yeh at UCLA.
Let me tell you, I wasn’t glad of going through surgery and having a whole adrenal gland removed due to a benign tumor. So I spent months reading and asking about it. My major fear, was that my left adrenal might be lazy and not be able pick up the job of the missing one. And it would have meant taking hormones 2X daily for the rest of my life. All because of a remote risk that my tumor might grow further and turn malignant. However no research confirmed my fear.
Since I do not live in CA, I had a phone consultation with Dr. Yeh, who put me at ease, he was very informative, and told me to take my time. We decided to book the CT scan with following surgery for 8 months later.
On the day of my CT scan, I had made up my mind that if my tumor was confirmed to be of fatty nature (myelolipoma) I would walk out of the hospital and have a blast with my free days in LA. But a few hours later, I met Dr. Yeh and Dr. Livhits, who explained me that the tumor did looked benign, but it was a nodule, with a low 6%-10% or becoming malignant. Now, to me that percentage seemed pretty high for taking a risk. Further, they explained me about their pioneering laparoscopic technique, by which a single 2” incision on the back is made. And by the way, my left adrenal looked really good and most certainly wouldn’t miss it’s right buddy. So I gave up on my dream of days of frenetic shopping in Bevery Hills, and confirmed surgery for the next morning.
Everything went really well, I slept 1 night at the hospital, and the next morning I was out. I was given strong painkillers, which I didn’t even need. No pain whatsoever. A few hours after being released I was sitting in a restaurants having dinner with my husband and family friends. It would have been perfect if it wasn’t for the embarrassing abdomen bloating, due to the gas patients get filled up with during laparoscopy. And I later read that it gets worse by sitting or standing up. Had I known I would have picked a different outfit, most certainly from the prenatal section. But as expected, 7-10 days later I was back to normal, and the effects of the full anesthesia wore off too (feeling completely spaced out and overly tired). Oh, btw, on my 3rd day after surgery while still in LA, I thought I felt so good we decided to go on a fruitful 8-hour shopping trip. Probably a too ambitious plan, as the following day I was a total wreck. But if I look in my closet now, I would do it again!
2 weeks after surgery I had my video conference with Dr. Yeh, everything looked good and I could resume carrying my kids around, working out, swimming, etc..
It has now been a month since my surgery, I’m feeling great, much more energetic than before, I’ve no idea if it’s related at all, maybe the nodule in my right adrenal was kind of sabotaging his job, and the left one didn’t realize it? Meh, what do I know? Oh, and my scar is really tiny, which of course is a big plus.
I’m very grateful that my tumor was benign and I recovered so well, and that I was referred to an amazing team who skillfully performed this surgery with the latest technique available in the field. Thanks a lot Dr. Yeh and Dr. Livhits for your professionalism, patience, and for taking care of me!
R U off hydro cortisone or you left adrenal is efficiently working.
I’m not taking any prescription meds, my left adrenal is working fine and I hope it will for a long time…
My name is Theresa. I am 75 years old. I have had hypertension for several years. Four years ago a nodule was discovered on my left adrenal gland. Since I had my thyroid removed seven years ago due to cancer, several of my doctors wanted me to have a biopsy. I had an MRI every year and every year they told me that I need a biopsy. My husband did research on the Internet and found that a biopsy should not be done due to the risk of disrupting the nodule should it be malignant. He then researched endocrine surgeons at several university hospitals. This resulted in finding Dr. Michael Yeh at UCLA. I made an appointment and saw him a few times over the years. H confirmed that no biopsy should be done. As I am a distance patient, living in Henderson, Nevada, I would mail and e-mail him my various test results. These included blood work, 24-hour urine and MRIs. These results would be followed by a phone consultation with Dr. Yeh and Dr. Livhits. The latest labs indicated that, after a few years of no change in the nodule, a change was taking place. I was then advised to think about surgery to remove the adrenal gland with the nodule. After much thought, and talking it over with my family, I decided to have the adrenalectomy. As I was not getting younger, and while I was in good health otherwise, I thought that waiting and watching could possibly be a mistake.
I had the surgery laparoscopiclly on Aug. 11, 2015. The nodule turned out to be a Pheochromocytoma which was not expected. The expertise of Dr. Yeh and Dr. Livhits is undeniable. They are the best! I was in the hospital one night and on pain medication for three days. After many years of taking three blood pressure medications daily, Toprol, Spironolactone and Verapamil, I am now down to only a low dose of Coreg. Maybe one day I can toss that as well! But, if not, that is ok. My blood pressure is now normal. If it takes only one little pill to keep it that way I am very happy.
Let’s face it, no one wants to have surgery. But, if you have any hesitation about it I can attest that you will be in good hands with Dr. Yeh, Dr. Livhits, the endocrine anesthesiologists and the entire team. These are the specialists you need. Believe me, they will take good care of you. They are very competent and caring. Too much is involved to trust the non-specialists.
Just curious if any of your blood work showed that the nodule was a pheochromocytoma? I have a history of papillary thyroid carcinoma and have now been told I have bilateral adrenal adenoma. My labs were normal but I was concerned of if being something I should look into. There is a generic factor involved in medullary thyroid carcinoma and pheochromocytomas. I’m not sure if you’re aware of this. It’s called multiple endocrine neoplasia.
Thanks
HI, I also had papillary thyroid cancer 5 yes ago and treated by surgery at UCLA. Now I am having secondary hypertension this week. My BP is fluctuating rapidly so my doctor ordered for blood and 24 he urine test for pheochromocytoma. Please let me know did you find out what is your adrenal mass? Thanks
My name is Nancy and I am 62 years old. I have been taking medication,
including potassium for hypertension since I was 37 years old. At the beginning
of the year, my primary doctor noticed that my potassium level was dropping.
She referred me to an endocrinologist who confirmed that with another blood
test. A CT scan depicted nodules on my right adrenal gland. I was sent to USC
Keck Medical Hospital for an adrenal venal sampling. The results confirmed the
diagnosis of hyperAldosteronism which decreased my potassium level caused by an
adenoma, a benign tumor on my right adrenal gland. I was unable to have surgery
immediately so the endocrinologist prescribed spironolactone which helped my
body to retain potassium. At that time, I had to stop taking potassium because
the level got too high. The endocrinologist also noticed that my
hyperthyroidism which had been in remission had returned. I needed to resume
taking methimazole and get my thyroid function under control before I could have
surgery. The adrenalectomy was done laparoscopically at UCLA Medical Center by
Dr. Yeh on the morning of July 21st. I fasted from the night before surgery and
took my usual morning medication. The surgery took about one hour. I stayed
only one night in the hospital and was able to go home the next day. My night
time blood pressure medication was withheld to observe any changes in my blood
pressure. My potassium level was normal, but my blood pressure was still high
so the nurse had me take my usual nighttime medication. The surgery involved
only one incision on my lower back. I was able to stand and walk the next day.
It took about a week to lose the discomfort around my stitches. At my post-op
appointment, Dr. Yeh said that everything was fine. Two subsequent blood tests
showed normal potassium levels. I was able to stop taking spironolactone and
enalapril. I now only take nifedipine and atenolol and my blood pressure is in
the low 100s. My primary doctor and endocrinologist will be keeping tabs on my
blood pressure and potassium levels. They are hoping that I will be able to
decrease the amount of meds I have been taking. I am glad that I had the
surgery and feel great.
My name is Nancy and I am 62 years old. I have had hypertension since I was 37 and have been taking medication for it including potassium. At the beginning of the year, my primary doctor noticed that my potassium level had decreased. She referred me to an endocrinologist who confirmed this with another blood test. A CT scan showed that I had nodules on my right adrenal gland. I was sent to USC Keck Medical Hospital for an adrenal venal sampling. The results confirmed the diagnosis of hyperAldosteronism causing a lowering of my potassium caused by an adenoma, a benign tumor on the right adrenal gland. I was unable to have surgery immediately so spironolactone was prescribed to help my body retain the potassium. At that time, I had to stop taking potassium because the level got too high. The endocrinologist also noticed that the hyperthyroidism which had been in remission had returned. I needed to take methimazole to get my thyroid function in control before I had the surgery. The adrenalectomy was done laparoscopically at UCLA medical center on the morning of July 21st. I fasted from the night before and only took my prescribed high blood pressure medication that morning. The surgery took about an hour. My hospital stay was only one night and I was able to go home the next day. While I was in the hospital my late afternoon blood pressure medications were withheld to observe any changes. My potassium level was normal, but my blood pressure was high so the nurse had me take my usual blood pressure meds. The surgical procedure involved only one incision on my lower back. I was able to stand and walk the next day. It took about a week to move my back muscles without feeling any discomfort. I had been taking four meds for my blood pressure. I was able to stop taking enalapril and spironolactone. I am now taking only nifedipine and atenolol and my blood pressure has dropped to the low 100s. Two subsequent blood tests for potassium have shown normal levels. At my post-op appointment, Dr Yeh said that everything looks fine. I now only need to see the endocrinologist and primary doctor to keep tabs on my blood pressure and potassium level. The doctors are hoping that I will be able to further decrease the amount of medication that I have been taking.
I am glad that I had the surgery and feel great.
Dr. Yeh and his team (Dr. Lihvits) are amazing. Professional, efficient, and knowledgeable. I was diagnosed with Pheochromocytoma in 2009 and had an adrenalectomy to remove a large tumor (different hospital). In 2015, I had a reoccurrence of the disease, this time metastatic with several small tumors. Dr. Yeh and his team removed several tumors laparascopically, with 4 small incisions, no complications and only one day and night in the hospital. When you have a medically rare disease with high probability of complications (blood pressure spikes) during surgery, its comforting to know your in the hands of the best surgeons and anesthesiologists out there. I have a long road ahead, since surgery does not cure my disease, however, I can go into my next phase of treatment with a lot less disease, fewer of my symptoms-and without a lot of downtime recovering from surgery.–Emilija
Good luck to you. Just continue your treatment with this team and you will be fine. UCLA is the place.
I cannot say enough good things about Dr. Yeh and the Endocrine Surgery team at UCLA. I had a car accident on Janury 4th, 2015, where a post accident trauma center CT scan revealed what proved to be a non-functioning, incidental right adrenal mass 2 CM in size. I kid you not, it was easier talking with the UCLA staff and getting on the phone with Dr. Yeh then it is getting in to see my local primary care physician. Three weeks from my first call I had an adrenalectomy at UCLA (as a distant patient since I live in Reno, Nevada). Dr. Yeh had just started doing this particular procedure with a single 1 1/2 inch incision and I’ve had cavities filled that were more uncomfortable then this surgery. My operation was on a Wednesday and I was back to work the following Monday. AMAZING is the only word that can describe the experience. Any one in need of any endocrine related surgery would be foolish to have the operation any where else – people fly in from around the globe to have Dr. Yeh perform their surgery. If your consultation with Dr. Yeh incidcates you should have an operation, DO IT without any hesitation…. He would never steer you wrong…
I could not have said it any better. this is my story.
This kudo is long overdue. Dr. Yeh and his team saved my son’s life. After 2 hospital admissions spanning 2 weeks, his attending doctors seemed ready to refer him to palliative care-a 22 year old, previoulsy healthy young man with an adrenal mass and florid Cushing’s. They were mainly focused on just managing symptoms; not moving forward. That is when I found Dr. Yeh. Within 30 minutes of seeing my son, Dr. Yeh had diagnosed him with adrenal cortical carcinoma (ACC) and had scheduled his surgery and admitted him to the hospital. Dr. Yeh and his team, including Jennifer, NP, Dr Lihvits, and Dr. Donald, monitored and treated him for a week before surgery to balance his electrolytes, manage his hypertension and bolster his nutrition status and strength, to effect the best possible outcome. The surgery went very well as did the recovery in the hospital for another week. He was discharged 10/6/14 and now looks and feels remarkably better. I, and my family, cannot express our profound gratitude and respect for Dr. Yeh and his team. Throughout our ordeal they were more than competent and compassionate.
Last Summer my gastro-intentinal specialist discovered a nodule on one of my adrenal glands that was about the size of a golfball. Fortunately it did not seem to be secreting any hormones but it was large enough to concern both of the endocrinologists I subsequently consulted. They advised that I have it removed and referred me to Dr. Yeh.
I am a 59-year-old teacher and in generally good health, and I have never had a significant surgery before, but my doctors seemed to feel that doing nothing could eventually lead to significant problems (cancer). Although I felt quite confident in my doctors–among them Doctor Yeh who was to perform the surgery–I was quite nervous about the surgery itself and the recovery period.
In short, I had the surgery on January 6th and stayed in the hospital until the next morning. All medical personal involved were open and communicative, and in truth, aside from some nausea (and throwing up on the ride home), I suffered minimal discomfort. For the next two days I sat on the couch reading and watching a few films, but I really wasn’t in any pain. I did take the pain meds before going to bed as a precaution, but slept well and within two days I dropped them entirely. Most importantly, I was back in my classroom six days after surgery, functioning at 90%. Within another day or two I was 100%. I was fully expecting significant pain and discomfort along with a longer period of recovery. I can only conclude that Dr. Yeh is a skilled and caring surgeon, and I am grateful to him and everyone else involved for giving me such great care.
Anyone who would like to ask additional questions is welcome to contact me.
Fred
JUST HAD ADRENAL SURGERY BY DR. YEH BEEN ON B.P. MEDS FOR 25 YEARS NOW I’M ON NONE. AFTER FEW DAYS WAS DOING NORMAL ACTIVITIES AND NOW STARTING PLAY GOLF AND EXERCISE. GLAD I HAD IT DONE AND KUDOS TO DR. YEH AND STAFF
I have similar story and stopped my BP meds after 15 years.
There are not enough words to describe the efficiency, knowledge, skills and amazing bedside manner of Dr. Yeh, Dr. Levhits and their anaesthesia team.
I will not hesitate delaying adrenal surgery for even a day if the diagnosis and recommendation was done by these two amazing surgeons. I am thankful to them for ever.
minoo
I have a history of cushions disease & syndrome. I have all sympstoms of it again. This time my mri is negative but cortisol levels high. Could they be on adrenal glands. I feel like my kidneys are larger & hurt. I continue to gain weight & my buffalo hump & breasts have increased in size.
My name is Susan Steenson and I am 66. For the last 3 years have been on an awful journey. I was diagnosed with Cushings after unexplained weight gain and high blood pressure. I was so lucky to find the wonderful , caring team at UCLA to help me. DR Anthony Heaney was my endo and right from the start I felt that this man was the one to help me. He was so kind and caring and always honest . It was so hard to find a doc that understood Cushings. I researched it for hours and Dr Heaneys name always popped up with wonderful reviews.After many tests it seemed that I had a tumor on my pituatory,. It wasn’t 100% but the docs said there was a strong chance it was there. I had surgery 3 /7/ 12 . Dr . Berconsnider was my surgeon and was great.. I felt very confident with him and went into surgery with high hopes. I had been so ill for so long that I was looking forward to the surgery. The surgery was unsuccessful and very disappointing. Dr. Berconsnider thought he had it ,and removed 1/3 of the pituitary but when the labs came back he didn’t get it. Back to square one! The search went on for the tumor and every scan biopsy ,blood , urine test was given to me. No luck and I was so ill with all the symptoms of Cushing I was about to give up. I have always been very strong and upbeat, but I had just had enough. Dr Heaney said a choice I had was to remove both adrenal glands to stop the cortisol production that was causing all the problems .I met with Dr Havari and felt very secure in her hands. I had the surgery on 5/ 31/2013. It was a difficult surgery, 10 1/2 hrs I came though it well after a few days in hospital. I felt better right away and am continuing to improve .My life on a daily basis is not what it used to be but much better than with Cushings .I have done my homework on Cushings but it now seems I don’t have Cushings but have the opposite , Addisons ! I am busy doing my research on it and am learning how to cope with it. I am still in recovery from Cushings and find it hard to be patient. I cannot say enough about how well I have been treated au UCLA. I will continue to search for the tumor but until then am thankful for every day.
Hi my name is Diane. Just had my surgery Nov 7. Bilateral adrenalectomy due to Pheo’s. How are you doing any advice.. I am very nervous about life long meds and having a crisis….
Hi everyone. My son a 6 year old and was diagnosed with FSGS disease since 2011 , his growth is slow , he looks like 4 year old , I conducted for him cortisol test = 2.99 . now I give him these drugs : 5 ml of prednisolone syrup /day ( 5 mg) , tacrolimus 0.5 mg (2 tablet per day), 5 ml Calci – Cal syrup /day ,and enalapril 5mg ( ½ tablet two times /day. My question is: can I give him growth hormone. Because there is an inverse relationship between cortisol and prednisolone
Hello my name is Raya. I am a 23 year old female. I was diagnosed with pheochromocytoma relating to a possible genetic disease Von Hippel Lindau. I had an adrenalectomy on my right side. I was referred to Dr. Yeh, and is so glad that I was. I felt like I was in great hands. Surgery went well. Recovery was fast. Did not experience symptoms until pregnancy. Symptoms include rapid heart beat, tingling sensation in hands and feet, sudden severe headaches. Diagnosis with found through 24hr urine and PET scan
My problem is my primary will not refer me to another Dr like and endocrine specialist ????
I wonder does anyone know if a thyroid test comes back ok does it or does it not dismiss pheochromocytoma ?
Next question,where and how do I get a Dr to believe my symptoms are not just anxiety so I can get the proper testing!
I fit the criteria.
I can’t answer your first question because I am not a doctor. But the second question I can provide my thoughts on. I have always had the general practitioner order the blood work and then I get a referral and take the test results to a specialist. This makes sure my labs are understood correctly.
Thank you for your post. I have an appointment with Dr. Harari in a few days. I do feel better to know how you feel about the care they gave you. Good luck to you! Kelly
Tina, That was my problem for many years! I was AWLAYS offered anti-depressants. But that is all they saw. That I had anxiety. Demand the 24 hour urine test! Tell them to prove you wrong. And a thyroid test that is out of range is an indicator that your body is not right. It took me 15 years. Cushing’s. So elusive. Good luck yo you!
Hello, I have been reading as much stuff i can on this topic as over the years i have been really sick.
I am 34 years old live in Midvale, UT. i guess i can say after 2009 i started having symptoms after i had my baby i started taking bike rides and immediately after i was so weak i felt unable to do much i would shake for few days and i was insecure about holding my baby as i thought i was going to drop him. I started having multiple heart racing attacks so i went to the heart doctor and i knew i had a whole in my heart that i was already diagnosed with as i suffer from headaches and they found the whole. So we kept thinking that may be the cause of the fatigue and so on.
Best idea was not to be physically active. that year my 7 year old son was diagnosed with type one diabetes. Hes doing good now managed well.
About 6 months later i return to work and i start having bad stomach pain and heart palpitations and i will turn red in the face i was so scared i thought i was going to just DIE! It will induce diarrhea and it smells like a perm. But for the most part i am always constipated until these onsets of this. I started taking pictures. I would leave work and go to the hospital as i didn’t know what was happening. They would say oh your coming on with something, stomach flu, dehydration but was not able to catch my heart issue and or redness in the face. I’m Hispanic and when I say i flush i turn to look like a devil. So i would seem to go more and more and noticed one Sunday that drinking the red wine at church was causing me to fall into one of the attacks so i stopped partaking in the religious part of that due to what will happen.
I went to the hospital on Easter Sunday and i was having tachycardia and i was flushed red they gave me benadryl as they thought i was having an allergic reaction and nothing until they gave up i was there 4 hours with redness and until it all went away they said it may be i have an adrenal problem but no diagnosis nothing.
I did go back to the heart doctor and they did the monitor and nothing happened that week so time would only tell. i kept getting sick and my heart doctor decided to go ahead with the surgery to close my PFO.When i was in the surgery room and they had the catheter in i had an attack my heart got stuck on 270 beats per minute. I was not all the way under your awake but i had anesthesia they automatically gave me some medicine that man i felt like i was stuck in concrete it was so dang scary. But finally my heart doctor seen what was happening to me the only thing i was not red no poop. They stopped the surgery.
The next week i had to go back in and have my heart ablated and then next week after or 2 i had the whole closed i thought that was going to solve everything.
But NO! I still have all the same things without the whole getting stuck part on my heart when i get an onset of whatever it is that happens to me. Recently i been doing ok and i signed a contract at the GYM with my old man and we started working out 4 days came and went and guess what i got really sick i didn’t even feel like i can go to work.I”m on survival mode now and been back to the heart doctor and he said all looks good. Decided that he will do a stress test and what happens i have mores tachycardia i guess its SVT’s supra ventricular tachycardia. well it was bad i had to stay there from like 2 pm to about 6pm they kept giving me medicine to try and stop the svt and i can only say i thought i was dying. The medicine they gave me to try break the svt hurt so bad it was like all my blood vessels were being smashed all at the same time. My stomach was hurting so bad i kept asking the doctor to not let me die as i have 4 kids and they kept telling me your going to be ok.it didn’t work they gave me twice the dose and that was even worse. I was screaming it was nothing in compare to labor. They decided to give me another type of medicine and it worked that did not hurt. it took a few minutes and i was good.
I got to go home like nothing really happened. they say i have to have surgery again for another ablation.
I notice that if i get upset it makes me flush and i shake but what has even scared me more is that my son who is now 3 had dental work and he was given anesthesia and he turned red. He has diarrhea all the time too. I think my boys have what even i have. and that scares me more than me having this. I have been to many doctors and many test and still nothing it has been years. I don’t want to die. But i have been so scared lately my husband really has no idea which way to help he is no longer supportive, He makes me feel like I’m making up this stuff but he can see it happen too.
there was a time frame that i though i was being poisoned as the diarrhea came out of no where so i stopped eating as much. I also noticed that if i eat too much i would get sick too.If you can help me please do. call me or something email me i don’t know the doctors just pass me around taking part of my insurance but then don’t have or take time to really solve anything,
I’m pleading with who ever will listen.I’m not crazy i need a good intelligent doctor.
Sincerely, Rosario
I think you need to see an endocrinologists… it sounds like you might have a tumor called pheocromocytoma….look up the symptoms… God bless you…PS have your children checked, sometimes it’s genetic and runs in families
Yes, I agree, a pheo! It is not easy for doctors to believe you, they think it is anxiety. Go to doctor and ask for 24 hour urine test.
I recently went to an endocrine doctor he took some 18 vials of blood and 24 hr urine. They diagnosed me with hoshimotos disease and said that I have a lot of abnormal labs gastrin level through the roof. Then the doc says he thinks I have tumor but he can’t diagnose me he had to send me to stomach /gut doc the had me get the octreotide scan & now they say yes you have nuro endocrine tumor. So the sent me to surgeon he was to do endoscopy &biopsy but the ultrasound and biopsy was unsuccessful as he could not scale of find it. He said he wants to do an exploratory surgery. So I’m still really sick I have beryl my job. It makes my life stressful .
DEEPLY GRATEFUL TO DR. HARARI AND DR. HEANY. This past May my doctor discovered by accident that I had a tumor in my abdominal cavity. After many months of testing I was referred to an endocrinologist and I was very fortunate to have Dr. Anthony Heany take my case, who ordered another round of multiple tests and specialized scans to finally confirm that I had a tumor in my adrenal glands. I still did not have any symptoms at all –no high blood pressure, no sweating, and no trembling. Dr. Heany referred me to Dr. Avital Harari who explained to me that the tumor was a paraganglioma, which means, it was outside the adrenal glands, and it was located between the aorta and the vena cava. Dr. Harari explained clearly all the potential complications and she decided to invite Dr. Quinonez, a vascular surgeon, to participate in the surgery. Dr. Heany prepared me in advance for the surgery by prescribing medication to lower my blood pressure and heart rate dramatically to prevent any possible spike during surgery. Dr. Heany was unbelievably supportive and optimistic about the outcome of the surgery.
My surgery took place on September 18, 2012 and when I woke up in the recovery room Dr. Avital Harari was there next to me greeting me with one of her big, contagious smiles to let me know that after a 4.5 hour procedure the surgery had gone well. She had excised the tumor that was attached only to small vessels (as opposed to arteries), and the prognosis looked very good. I stayed in the hospital for six days, in which I had the best care possible from Dr. Harari and her team of surgeons. They checked on me every day, sometimes, several times per day, and I always felt that in spite that this tumor was very rare, and this kind of procedures was unknown to even family doctors, the medical team had a command of the care and attention I needed. I was also pleasantly surprised to receive the visit of the endocrinologist team presided by Dr. Heany. His research fellows visited me every single day in the hospital, and their presences, as well as Dr. Heany’s visit, made me feel extremely supported.
I was very lucky to have access to the UCLA endocrinology department. The specialized knowledge that Dr. Heany and Dr. Harari have on pheochromocytomas and paragangliomas is absolutely exceptional. UCLA has one of the best teams conducting research on issues affecting the adrenal glands. I went into surgery confident that I was in the best hands ever. My son, a first-year secondary English teacher said to me after the surgery, “Dr. Harari is a genius! She has the ability to be this incredible surgeon and at the same time, she has the heart and the compassion to communicate with her patients and their family about what she just did. She saves lives!” I happily concurred with my son. Dr. Harari is a rising star in the Endocrine surgery unit at UCLA.
Right now, I am recovering nicely. The incision is big but is healing, and I am planning on going back to teach next semester. As Dr. Heany said optimistically at the beginning of this ordeal, “this is just a bump in the road.” I am now very positive that this is the situation for me. I am deeply grateful to both, Dr. Harari and Dr. Heany for the caring support, and to their resident doctors, research fellows and staff. They are the best!
If you are on this website I am sure you are looking for answers, comfort, and hope. I was in your shoes two months ago. After hearing a doctor tell my very active 54 year old father that he has a rare tumor that they have never seen at their hospital before I was devastated. We had already spent about a week in the hospital trying to figure out why my dad was in such incredible back pain and high blood pressure (Low 200’s) when they found the mass. He had an extra adrenal paraganglioma behind his abdomen which they were not capable of treating at this particular hospital. They did not even have the blood pressure medicine needed to treat it, being this tumor is so rare. On one hand you are grateful for a name to call it, but then you start going on the internet and reading about it and you panic. We were told that my dad needed to go to either Stanford or UCLA, so I did want any normal 23 year old would do…I googled.
The first name that popped up was Dr. Michael Yeh. I told my very heavily medicated dad that he was who we wanted. By noon the next day we were told that Dr. Yeh was very interested in my dad and that he was going to do whatever he could to get him a bed. It was the first of many miracles to come. At about six that evening an ambulance showed up to take my dad from Santa Maria to UCLA, about a 3 hour drive. I followed behind with my mom and never let the ambulance out of my sight. This is when I told myself that my dad was on his way to one of the best hospitals, to see (in my opinion) the best surgeon, and he was going to make it. I told myself that he had no other option. When we got to meet Dr. Yeh I could tell that was his mindset too.
All of Dr. Yeh’s associates were kind, educated, and most of all caring. I knew that they all were on this incredible team that had one goal, fix Ron. My dad went into surgery at 10am and at about 5pm Dr. Yeh found my mom, sister and I sitting in the grass saying our prayers and looking at the clock. He immediately sat right down next to us and told us my dad was going to be ok. His tumor was attached to his inferior vena cava, which is one of the most important veins in your body. He told us that they had to remove and patch part of that vena cava and that he had a great group of surgeons working to close him up. He pulled out a pad of paper and drew it all out and answered all of our questions. I was in awe of what they had done. This man just had his hands inside my dad and saved his life.
I truly believe we are the luckiest family to have received such great care from such an amazing surgeon. You always tell yourself that this kind of stuff doesn’t happen to you, that this is something you would watch on a show or read in the paper. We lived it. We survived. Today my dad chased around my sisters dog in the backyard, mowed the lawn, and drove to the store. These are all things that you never really think twice about, but when you are faced with the fact that your dad came so close to not being around to do them you appreciate them so much more.
If you are in my position, or you yourself have a tumor I hope that you come here and know that there are success stories, there is so much education, and most of all a great team of doctors to get you through this.
Love, The Wises
Hmm it seems like your blog ate my first comment (it was super long)
so I guess I’ll just sum it up what I wrote and say, I’m thoroughly enjoying your blog.
I too am an aspiring blog writer but I’m still new to everything. Do you have any tips and hints for newbie blog writers? I’d really appreciate it.
I am a 33 year old who was diagnosed with cushings disease after my doctors found two tumors on my adrenal gland. He also found a tumor on my pituatary. I had surgery to remove the tumors on my adrenal gland and now I am having all kind of symptoms like: numbness in my hands and feet, fatigue, depression and anxiety and my pulse/heart rate is severely high. These were symptoms that I didnot have prior to the surgery. Which makes me wonder if I was misdiagnosed or these new symptoms are related to the tumor on my pituatary. I am so nervous,scared, depressed, frustrated!!!! Could someone please help me?
I think it would be the tumor in the pituitary gland. Because of all the different signals it sends for all kinds of hormones to release, that is causing the symptoms. I had all the symptoms that you mention as well, but mine was due to a tumor in the right adrenal gland… Please have hope and stay strong, for the longest time no one was able to tell me what was wrong with me, several doctors would look at me like im crazy…. For me the fatigue and depression was the worst, but there was sooo many symptoms thats I cant even list…. I hope you get better soon.
‘Ana ‘, it’s Leah. i wanted to apologize because i could not move my page or anything so it looks like i repeated myself often(I’m a teacher and just spent at least 40 min trying to fix it. omgosh ! its 6:00 am and hate computers because u go on one site and end up far away, hours later! i must sleep at least 4 hrs. darn! thanks and i really hope i hear from u. b well. Leah Cohen(Ocala ,Fl – no place for a 50 yr. old redhead, my 25 yr old son is living with me, doesnt want the sick daughter w/her mothersurprisingly alone w/out her true love since 1993, a city girl in the horse capital, my 20 yr old daughter who for some reason has been angry with me since 2010&m
i give up! Goodnight! 6:27am now
I had a tumor in my adrenal glad. I just had a adrenalectomy of my right adrenal gland and I must say, I am cured my gosh I literally went through hell for about a year.
It all started with fatigue and weight gain, and when I say Fatigue I mean so bad that I could not get out of bed for work, I also had severe anger and depression… Finally in April of this year I found a doctor who was able to diagnose me, mind you I went through 3 doctors and everyone just looked down on me like i was crazy, they gave me antidepressants and that was pretty much it. I finally found a new doctor and upon my first visit with him in April i was crying I told him I am super fatigue, angry,m depressed, gaining weight like crazy and I have pain in my flanks, he looked at me and was so caring and told me I look like i have cushings, I asked what that was and he explained, a few days later he sent me for a CT scan of my abdomen and there it was a tumor about 5 centimeters in my right adrenal gland.
He sent me to a endocrinologist he for a 6 weeks ran tests. Urine tests the 24 hour urine tests which are a pain as well as lots of blood work i felt like i lived in a lab. All this time each few weeks i went to the doctor i kept gaining about 10 to 15 pounds a month. Anyways first test showed that my cortisol level was high indicating that I had cushings syndrome but the other tests all the same tests showed i was normal. Long story short I was miserable and thought i was crazy I really was thinking of killing myself that’s how bad it got, the last 8 weeks before my surgery i developed severe high blood pressure as well as my pulse being at about 115 to 120 a min. I started to get severe swelling in my legs to where it was hard to walk, and also swelling that came and went in my forehead. I was always sleeping at least 15 hours a day and I was put on about 7 medications. I seriously had a hard time moving it felt like my insides were swollen taking a shower felt like i was going to die. I developed dizziness and light headed, No one could even talk to me anymore because i was so angry and could not get along with anyone or talk to anyone with out screaming at the top of my lungs, i cried several times a to me my life was really over and the only out was me dying.
Long story short I had my surgery with Dr.Yeh on 08/15/2012 and let me say I no longer take any medication, my depression is gone, my fatigue is gone … I am cured After being in hell for a year I never though that I would feel normal again, even though only one test out of dozens showed I had cushings this tumor was the cause of all my problems, i was so scared that I would never be normal, I have my life back I am me again I am starting to lose weight little by little, but thats besides the point I have no idea to express my gratitude for my health after what I went though physically, emotionally and mentally. I was alone in my fight, my family walked away, my fiance though I went crazy and no one understood what i was going through, everyone just thought i lost my mind and that I was literally going crazy.
For anyone out there going through what i went through feel free to contact me and please know you are not alone. I have to say Dr.Yeh was a angel that god sent to me who gave me my life back thank you, thank you, thank you …. You have no idea how thankful I am.
For anyone suffering please know that It will get better and your not alone.
A little bit about me I live in southern California, and I am 33 years old.
Hello,
I have been having similar problems for years..but on a lesser scale…lost half my hair ,vertigo ,
weight gain,severe fatigue,severe kidney pain,depression etc….. the list is too long. Not one doctor will help me . I keep mentioning adrenal and no one knows what to do. Can you please tell me the test to ask for? I was diagnosed with hypothyroidism but the medication did not help.For the last 6 months I take cytomel and it has helped somewhat but not for the kidney/adrenal area pain.
Char, I went to many doctors who thought I was crazy The doc the last one did a CT Scan of my abdomen and thats when they saw the tumor…but it could also be a tumor in the pituitary glad causes pretty much the same thing and for that you would need a CT Scan of the brain. I am sorry for what you are going through, and please trust me when I tell you I went through hell as well, Please let me know how it goes and remember your not crazy….Its the doctors who are lazy and not educated well enough that think we are crazy or that there is nothing wrong with us…..
I have MEN 2 A syndrome –
I have had the medullary thyroid cancer, it
Has recurred 3 times.
It’s been a long road-
In between all this off. & on I have had pheo symptoms!!!! On BP med Cardura for years, scans haven’t been able to pick up Pheos, but my Drs. say & believe it’s pheo, & sometimes Pheos are so small, they won’t lite up on scans, but, my Endo in Indy & Florida say in time, the Pheos grow and will show up, It’s been tough, & difficult!
I sweat, headaches, high BP.
It seems this summer ( 2012 ) my symptoms
Have increased!!
Yesterday , I went in for a cortisone injection for foot arthritis @ my rheumatologist here in Flprida…
My BP was 152/105
My rheumatologist was very disturbed & called my GP.
Now, here we go again!!
I see 2 Drs. today. & I will be sure PET. & CT is done & 24 hour urines begin again!!
That pheo is in there someplace….
I have the sweating – it pours off my face & head!
Pounding heart
High BP
Fatigue
All in episodes –
Etc etc etc – the symptoms have really flared & been more frequent
this past summer……
So, we will. See…
I have MEN 2 A & it’s all connecting the dots
All of my Drs. said over the years, that they think the pheo could be a size of a grain of sand & cause me to be sick with pheo symptoms, adventually the Pheos will grow
& show up one day—-
I am hoping something is found, I am tired of
This—-
Teresa
Hi Theresa,
I was curious if you were genetically tested for MEN2A to know for sure you have the disease? I have papillary thyroid CA and have had three surgeries and 2 RAI treatments but still have current residual tissue in the neck that they are watching yearly with ultrasound. Since all this I had perforated my colon due to supposed diverticulitis and incidentally bilateral adrenal adenomas were found. I too have symptoms and the fatigue at times in unmanageable. I had all blood tests performed to rule out pheo or cushings. The tumors have grown in 5 years but they are still watching them as opposed to surgery at this time. The larger being 2.5cm. Did you have a positive blood or urine test for a pheo and they just cannot locate them yet or are they basing the possible pheo on your symptoms and MEN2A??? Thanks for listening and advice.
I am going through so much of the same problems. The last year I have gone in and out if episodes of severe migraines, heart rate of 120. The anxiety, shakiness, not being able to even walk from my desk to the bathroom without feeling like I am going to pass out. I will get waken up in the middle f the night with my heart racing and my head pounding. My GP put me on Topamax to help with the migranes. I finally noticed that foods trigger and/or intensify these episodes. Nuts, beer, wine, pastas or a heavy meal. Processed foods, MSG. I try and stay away from these foods. I have been told this was menopause, then my GYN said no way. Finally in October I started feeling like I had something stuck in my throat. They found a nodule on my thyroid. We had it biopsyd and it was benign. I really thought this was going to be the answer to my problems. Well nope the Endo says it shouldn’t be. So we have been going thru test. The blood test that would point out pheo came back normal. But the salivary cortisol came back a little high. So now I am doing the 24hour urine catch. When I try and discuss these episodes to the Endo she just doesn’t get it. I know this is it. Everything points to it. She stated that if these test came back normal then it is not an Endo problem. I have been I tears all weekend. My work is very stressful and I can barely deal when I am going thru these episodes. I need to find a doctor that knows these conditions and are not so narrow minded.
Hello Farzana “A.K.A. Ana” Fakhry says:
How do i get a hold of this Dr. Yeh.. i live in Guam and going through the same problem with a tumor in my right adrenal gland, am currently on medication taking, potassium, calcium, altactone, vitamin D, im psyching myself up for surgery and from listening to you.. i want to make contact with this Doctor…nobody understand this rare syndorme.. they said i have conn’s syndorme!!
anonymous
I went through all and my story is: i was very cheerful person with good humor and untiring at work. always laughing, calm and in my job I never loose temper but all of sudden my changed. I talk to my slef oh this is not me. I am angry most of the time with children with my husband and even with collegues. When ever I upset my face turned into hot flushes and become red. I went to my GP and he simply said this is work stress. I talk to my self if my work is hurting me and got answer no its my self and something is going wrong inside my body. I again went to my gp and made up false stories about pain in liver, under ribs, on my back so he could refer me for scan. My GP then sent me for gall blader ultrasound. The very next day my GP phoned and said I am sending immideate two week referral for MRI as ultrasound catch a lump on top of my Kidney where Adrenal glands are. In short 7 months they took all my test for cortisol, 24 urine etc and found that I have chausing which means my adrenals are secreting too much cortisol. Luckily I had no other problem like high bp. Again in short it took one year to had my right adrenalactomy..sugeon said I had to be on steroids for minimum one year but I recovered in 3 to six months.. now no steroids nothing and I am again a cheerful lady. I am loosing weight slowly.
Finally, I would say listen to your body first. the same thing happens with my diabetes. I felt that something is wrong with me and gp said u r perfect. they check my urine. I again went to GP and empahsised that i am not normal and he sent my blood to lab and they found I am diabetic. Dont wait if you dont feel normal. Your body is your best gp, it tells you every thing, it just u need to know your self.
Cushings causes diabetes (hope that’s has since resolved from your surgery…glad you got answers)
How did they wean you off meds?
I’m 3 and a half post op and just been told to wean by 2mg every 2 weeks
I’m scared its to soon
Did you have anxiety chest pain like feeling after adrenalectomy ? I’m getting it at night when I should be going to sleep and I’m on day 50 no period thinking this isn’t helping my anxiety
I was operated in July and was on hydro cortisone, In December I planned vacations to Pakistan. I suppose to take my medicines but I was so busy and happy with friends and family that I sometimes forgot to take my medicine and still feel active with no side affect. On my return I spoke to my GP and inform that I am very rare taking my steroids. He referred me to endocrine team, they took my synthetic etc test and confirm that I do not need to take steriods anymore as my other adrenal is working very well and producing enough cortisol. Since then I am not taking and completely wieneff from steroids. So in total it took 6 months to completely living without medications.
Reading your post just blew me away. i have all the symptoms u had and only landed on that page because the other day a new Dr mentioned that my taking ativan for over 20 years can cause pituitary cancer. Did u take ativan or any other benzodiazipam? Can we “talk”, please . my mom used to tell me I was one of the strongest women she had ever known & now I’m here to be close in case she
needs anything since my dad(ok, i can’t go back down to where i was and it’s so late. can u email me? my name is Leah& email is:yarmarkcohen@email.com..texting is even better:786-281-1939..my mom is always saying things like I’m always sick, how can i get a job..
i am a mother of 3, my 23 yr old
and has Cystic Fibrosis , the #1 genetic killer…. old & has Mystic Fibrosis
passed a year ago and now she’s taking care of me
something is so wrong and need a good Dr in this awful town. i used t
Hi I have cushing disease, which was basically diagnosed by myself as doctors couldn’t tell what was wrong with. I have tumor in my right adrenal gland which is producing excessive cortisol, I am having surgery in 10 days but have fear what to expect after the surgery as my adrenal gland will be taken off n will have to be on medication until other glands will start functioning, did you had cortisol problem, n what is your experience after surgery, please advise
I was diagnosed 3 months ago with a tumor on my adrenal gland. ..I have had so much blood work that has came bsck abnormal so now there sending me to endro specialist in June. .I’m miserable. .I have gained anout 40 pounds in 7 months.MY whole body is swelling. I have alot of pain in my lower back and my legs. I’m very moody and very emotional. I’m just wondering after surgery how long before you lost all your extra weightand did they put you on high doses of ssteroids after surgery. I just want to feel normal again. Hope you can help me.
Was the tumor on your pituitary gland?
Hi. I read your post about adrenal adenoma and was wondering if we could talk. I’m going.through much of.the same with Doctor etc..trying.to get a diagnosis. Thanks. Deb K
Did you have panic attacks like a rush go through your body as well and urge to pee alot when out or just out of the blue
I was diagnosed with a (leo) tumor on my left adrenal glad in June. I was actually happy to hear this diagnosis as I was sure I was suffering from an incurable heart disease. I had heart palpitations, I was out of breath after climbing a few stairs, I had lost 17 lbs – without even trying! My blood pressure was 235/195 and I would wake up in the middle of the night with my heart pounding like I’d just run 10 miles. I would be sweating like I’d just run 10 miles also.
Dr. Harari scheduled my surgery for July 5th and explained everything to me in a way I could understand. She had so much cariing in her voice and expression that I absolutely had no fear of going in for this – my first ever – surgery. The hospital experience at UCLA Ronald Regan hospital was fine. The nurses were great – the food was great, and two days later I was released. I stayed with a friend for the next two days. A month later I am back to normal. I was surprised that I didn’t have more pain after the surgery, but I have to honestly say – it was a piece of cake. Four small incisions was what it took to remove my tumor and restore me to health. I am back to exercising without gasping for air and I feel better than I have in a very long time. I wonder how long that tumor had been growing inside me and causing all kinds of havoc. I am so thankful to Dr. Harari, Dr. Edling, Dr. Davis and all the staff at the Dvision of Endocrinology for my new lease on life. I feel amazing!
I am a 67 year old woman,who was diagnosed with pheochromocytoma on 3/16/2012, and had a left adrenalectomy on June 12th at U.C. L.A. Dr. Michael Yeh was the surgeon, and he did an outstanding job doing the surgery laproscopically, in spite of the challenge of my severe scoliosis.
I’ve had high blood pressure since 1995, and was treated with antihypertensive drugs until my surgery. I am no longer on blood pressure pills. I do not know how many years I had the undiagnosed phechromocytoma.
In 2011, my cardiologist, Dr. Levine noticed a tumor on my left adrenal gland, when he ordered a chemical stress test, which was a CAT scan. He did not refer me to a specialist, so I assumed it was nothing to be concerned about. I had so many orthopedic surgeries, that I did not want to find another problem and have to undergo another surgery.
My problem was discovered while looking for a parathyroid tumor, as I had a high parathyroid problem for many years, which causes osteoporosis. My endocrinologist Dr. Drange did not order any tests for me, other than blood work. She referred me for Reclast infusions to treat the osteoporosis. My dermatologist, Dr. Bierman referred me to Dr. England for a second opinion regarding my parathyroid problem. Dr. England had me undergo a Sestamibi, which did not reveal a parathyroid tumor, but also a kidney ultrasound looking for a possible kidney stone. The ultrasound revealed the adrenal tumor for the second time. Unlike Dr Levine, she was very concerned about the tumor, which she felt required furthur testing. I had a Cat scan of the adrenal, which revealed a tumor that was cause for concern, and she referred me to Dr. Michael Yeh,endocrine surgeon at UCLA. Two 24 hour urine tests confirmed I had twice the amount of catelcholmines, as was normal. I then had a 18fdopa Cat scan which confirmed the diagnosis of phechromocytoma.Fortunately, the tumor was only on my adrenal, and not in other endocrine glands. I was prescribed the drug dibenzyline until I was ready to have surgery.The drug made me very sleepy and cognitively impaired, but was necessary to prevent blood pressure spikes.
On the day of the surgery, I was in the hospital overnight, and unfortunately, during the night my mother-in-law passed away in Florida. My husband picked me up from the hospital the next morning, and I remained home. He flew to Florida to bury his mom, and I was able to remain at home alone and take care of myself for a five days because I was ambulatory. My only problem was that my ribs hurt for a while, probably due to the scoliosis, and I also had afternoon fatigue for about a month. Perhaps the fatigue was due to my age and or the heat in Agoura Hills, which gets quite hot. Anyway, I am grateful to Dr. Bierman for referring me to the very proactive and caring Dr. England. I am sorry to hear that she is leaving California. I am especially grateful to Dr. Michael Yeh, who made the diagnosis and very expertly performed the surgery.
My 13-year-old son and I have a genetic disease called vonHippel-Lindau (vHL). This disease can affect many different parts of the body, including the development of pheochromocytoma tumors on the adrenal glands. Luke and I have an extensive annual testing schedule in order to catch any health problems when they are small. Sometimes it gets tiresome, but last year we discovered how necessary it is in the lives of vHL patients.
In the fall of 2011, Luke, had his annual 24-hour urine test come back with higher than normal levels of catecholamines. He repeated the test twice and the numbers continued to be elevated. The next step was to look for pheo tumors with a CT scan and an MRI. In January 2012 the CT scan found the presence of a pheo tumor on Luke’s right adrenal gland. Fortunately it was small and had not begun to cause any symptoms. We were told that it needed to be removed and were sent to a pediatric surgeon who, we found out, had only performed one surgery like this. Yes, he was an experienced surgeon, but not with this type of situation. There was talk of making sure the endocrine doctors were present during the surgery, but no mention of an endocrine surgeon. At this point I didn’t even know such a field existed.
Before proceeding with the pediatric surgeon, we continued our own research online. (It is very important to be an advocate for yourself and/or your patient!) We knew that UCLA has a community of doctors who work together with adult vHL patients. I went to the vHL website (www.vhl.org) and saw a video with Dr. Yeh speaking. I was surprised and excited about his expertise with adrenal pheos! I found the UCLA endocrine website and was even more encouraged with the information it presented. I emailed Dr. Yeh directly and asked him if he would consider seeing my son, even though he was only 13. Dr. Yeh responded within just a few days and said he would be more than happy to take Luke on as a patient and find out, after looking at his test results, if he could help him. He mentioned in his email that he had several current cases dealing with the same issue!
At first we were told we would have to wait several months for an appointment. When I asked to get in sooner (always ask!) they were able to fit us in. Meeting with Dr. Yeh was an answer to many prayers! He was/is very knowledgeable, confident and honest. He made Luke feel very comfortable and explained everything to him, drew diagrams, and treated him like a young adult. Luke thought Dr. Yeh was very “cool” and was in agreement with us that he should be the one to do the surgery. When you are planning any surgery, but especially one involving a pheo, it is very important to have a surgeon who does this type of surgery all the time. Dr. Yeh is that doctor! In addition, he also has a surgical team that is used to working together on these surgeries. There were also some things we asked for, unique to Luke’s situation, that Dr. Yeh was willing to try to do if they were possible during the surgery. We appreciated his willingness to consider the possibility, and we then left it up to the expert.
To prepare for surgery, Luke was on medication for three weeks to keep his blood pressure low. We monitored his blood pressure at home and emailed his results directly to Dr. Yeh. Luke was tired due to the medication but it was not overly debilitating.
When the day of surgery finally arrived we were all nervous, but also confident in the expertise of Dr. Yeh and his team. They prepared us with explanations of all possible outcomes and ways they would deal with potential problems with the surgery. The nurse that was with Luke throughout the surgery, phoned several times to the waiting room to let us know he was doing fine. The surgery was over faster than we had anticipated. Dr. Yeh came out to meet with us and explain what he had done (with pictures!) Everything had gone according to plan; the laparoscopic surgery was a success and it was over…whew!
Luke’s recovery was very quick. He went home the next afternoon and was back to normal in a week or two. A month later he was backpacking with his Boy Scout troop. At Luke’s post-op appointment he was disappointed to learn that he wouldn’t need to come back to see Dr. Yeh. I explained that this was good news! We will both continue to be tested annually for adrenal pheos with the 24-hour urine test. We certainly hope that neither of us will have one again, but if we do, we know exactly where we will go for the best care and treatment possible. Thank you, Dr. Yeh!
What better day than today, Thanksgiving Day, for me to post my gratitude to Dr. Harari and her team for giving me my life back. Six weeks ago today, Dr. Harari removed my left adrenal and the tumor that was causing hyperaldosteronism. Removal of the tumor caused a lengthy list of symptoms to disappear within a matter of days, and I am feeling better than I have in many years!
In February 2011 I was diagnosed with an adrenal tumor that was causing my body to produce too much aldosterone. This was causing secondary hypertension and low potassium. My road to diagnosis was very long – I had to fight for years to prove that something was amiss other than garden-variety essential hypertension. I did not fit the typical essential hypertension – I am not overweight, have never smoked, exercise and practice yoga regularly. I am not under any unusual stress. The conventional advice – take lots of prescription drugs, watch diet and exercise – had failed me.
I had been having symptoms since the summer of 1997, when while relaxing at home reading, my heart suddenly started racing and I had chest pains. My roommate drove me to the ER, where they gave me Ativan and dismissed it as a panic attack. This was the first of many so-called panic attacks that I had between 1997 and 2003.
Soon thereafter I developed numbness and tingling in my hands and feet, and severe back pain due to my left trapezius muscle going into spasm. Tests were run for multiple sclerosis, but were negative. Again, nothing was diagnosed. From 1997 to 2001 my blood pressure was always very low, 110s/60s at most.
In December of 2001 I ended up in the ER when I inexplicably could not stop throwing up. When I got there, my blood pressure measured 145/85! I had never had high blood pressure in my life and was quite worried. An EKG showed left ventricular hypertrophy. At the time I was unemployed and uninsured, and nothing much was done other than being given the usual “watch stress, diet and exercise” advice.
Finally employed and insured again, I went to a new primary care doctor. In addition to the moderately high blood pressure (still 140s/low 80s), I had begun to notice occasional racing pulse and palpitations, hair loss from my head and hair growth on my face, and increasingly irregular menstruation (a problem I’ve had my entire life). I mentioned the LVH to her, but she seemed unconcerned and did not do further testing beyond a BMP. My potassium came back low. The doctor put me on Yasmin, an oral contraceptive which she thought would help with both the potassium and menstrual problems. It did, but over time it had a negative affect on my emotional health, so I discontinued it. At this point I was put on 25mg Spironolactone, which helped the BP come back down to 120/70 or so, but after about three months I developed severe breast pain and had to discontinue it.
My insurance changed and with it, my primary care doctor changed. The new primary doc referred me to a cardiologist, who ordered a CT to check for renal artery stenosis. This was negative, so he concluded essential hypertension. This was the beginning of several years of experimentation with various antihypertensives and all of their miserable side effects – beta blockers made me tired and gave me headaches and shortness of breath; ACE inhibitors made me cough; just about everything made my ankles swell. Eventually it was determined that Diovan and HCTZ didn’t cause intolerable side effects, and I started with 80mg Diovan and 12.5mg HCTZ.
A move and a job change led to another primary care doctor change. At my first checkup, I mentioned that I was becoming increasingly concerned about the racing heart/palpitations that seemed to have no known cause. He responded by increasing the Diovan dosage to 160mg, then to 320 mg, then adding Bystolic, which gave me the worst shortness of breath I’ve ever experienced. He then added Cardizem 180mg. From the beginning, I told the doctor that I felt the Cardizem made things worse – I thought it triggered headaches and made the palpitations more frequent. He told me this was impossible.
My first BMP results with this doctor revealed low potassium, and he put me on 20MEQ of potassium daily. I also tested extremely low for Vitamin D, and he told me to take over the counter supplements. I found that this seemed to increase the frequency of palpitations; I also noticed that my blood pressure began running in the low 160s/high 90s while on the vitamin D. The doctor dismissed this as being medically impossible; he said the palpitations and increased BP were caused by anxiety, recommended an SSRI, and said these were “typical problems for a woman my age.” I decided to take my business elsewhere.
By now it was December 2010. Within 5 minutes of hearing my medical history, the new asked if I’d ever had my aldosterone levels checked. When I said no, he referred me to a local hypertension specialist, who took me off all meds in preparation for testing. Surprise – rather than my BP going up, it actually *decreased* off medication! Things moved fairly quickly after this – after being off all medications for two weeks, my aldosterone came back high, renin low, and potassium low. A CT scan showed a 1cm nodule in my left adrenal.
The next step was adrenal vein sampling (AVS) which determines if one, or both adrenals are overproducing aldosterone. I had to have this done twice – it’s a delicate and complicated procedure, and often results are inconclusive. The second time, done in August 2011, clearly showed that only my left adrenal, the one with the visible tumor, was bad, which meant that there was a very good chance that having it removed would cure the hypertension and low potassium.
Once I had the results, I immediately made an appointment with Dr. Harari. I was scheduled for surgery, and on October 13, 2011, my left adrenal and the tumor were removed via laparoscopic adrenalectomy. There were no complications and I was released the next day.
By November 4, my medical team – my internist, hypertension specialist, and Dr. Harari – had all pronounced me “cured.” My blood pressure averages 120s/70s, my potassium has stabilized on the high end of normal, and I am off all medications. I feel better than I have in years – funny how you have no idea how sick you were until you are no longer sick!
Dr. Harari and her wonderful team made the whole frightening experience of surgery (it was my first) as easy as I could imagine. My thanks goes out to all of them for the “second chance” I have been given.
I have kept a blog throughout my entire experience with hyperaldosteronism (also called primary aldosteronism, or Conn’s Syndrome). For anyone wishing to learn more about the diagnosis and treatment of this disease, it can be accessed at http://http://waywardbus.wordpress.com.
Corrected URL: waywardbus,wordpress.com.
How you fell now. 2 years later – japalmira@bellsouth.net
~1 Year After
September 2010, marked the month and year that I went with my husband, Brian, to a doctor’s appointment to shed some light on why at 43 years old his blood pressure seemed to be uncontrollable, why he was experiencing uncontrollable sweating, chronic headaches, a low libido, among several other health issues… Brian experienced various symptoms for many years. He routinely went to his primary care doctor to discuss issues that he was having with his health. These issues didn’t seem quite alarming to Brian; although the symptoms were persistently there. Brian was relatively in good health, worked out regularly, and was very health conscientious.
Brian took numerous different medications for his uncontrollable blood pressure and was told various things regarding his uncontrollable sweating. “Perhaps you have faulty sweat glands.” “You appear to have a high metabolism because you work out regularly and this may cause the sweating.” The hypothetical diagnoses kept coming…
Being concerned that nothing seemed to address Brian’s medical symptoms we changed to UCLA Medical Group and made an appointment with a new doctor. After the first appointment, Brian’s doctor knew that there was definitely something causing Brian’s uncontrollable blood pressure. With the medication Brian was talking, his pressure should have been under control. Several medical tests were taken over a period of 2 to 3 weeks. After years of misdiagnosis, Brian and I learned that he had a tumor called Pheochromocytoma which was a type of tumor of the adrenal glands that can release high levels of epinephrine and norepinephrine. The tumor was said to be about the size of a mango and would need to be removed. Of course, this news was very shocking and scary; however, there was more to come.
Dr. Yeh was the surgeon who notified Brian and me about his condition. Dr. Yeh is FABULOUS; however, I’ll speak more about our experience with him in a moment. Dr. Yeh explained that the Pheochromotcytoma was “fused” on to Brian’s inferior vena cava (or IVC), which is the large vein that carries de-oxygenated blood from the lower half of the body into the right atrium of the heart. It would be virtually impossible to remove the tumor without damaging Brian’s IVC. This meant that Brian would also have to undergo surgery to repair the IVC once the tumor was removed and most likely require a blood transfusion.
A blood transfusion was not an option for Brian. He was determined to adhere to the scripture found at Acts 15:29 which commands man to abstain from blood. He was willing to abstain from blood even if this meant his own death.
Being that Pheochromotcytomas are not common tumors and many surgeons have never operated nor actually seen this type of tumor, we as a family wanted Brian to have the very best medical care and the most experienced surgeon to perform his operation. We had been assured by other physicians that Dr. Yeh was the very best. He had performed this type of surgery before and we were confident that he would do his utmost to see Brian through the operation. One glitch, Dr. Yeh had not performed a “bloodless” operation.
Still confident that Dr. Yeh was the best “man for the job”, we moved forward with Dr. Yeh and his team to discuss options concerning what Brian was willing to accept and not accept as it relates to “blood products.” Dr. Yeh was able to work along with his magnificent team to create a plan to address Brian’s need to maintain his blood level during a very tricky surgery.
October 13, 2010, Brian’s “bloodless” surgery was performed. It was a very long and distressing day for our family. However, the operation was quite successful. Dr. Yeh was impressed by the outcome of Brian’s operation and the rate in which Brian recovered. Brian’s blood count was low after surgery but not alarmingly so. Brian also recovered expeditiously without any complications. “I was the one with high blood pressure.” Dr. Yeh declared during a follow-up appointment following Brian’s surgery. “When we took a look at what we had to do, I was the one with high blood pressure,” Dr. Yeh said jokingly.
Our family cannot express how appreciative and thankful we are for Dr. Yeh’s willingness to take on Brian’s operation and look at other innovative ways to be successful without utilizing blood. Dr. Yeh was compassionate, willing to examine other avenues, and willing to respect Brian’s wishes and determination to refrain from blood. We have heard that Dr. Yeh was considered one of the top surgeon’s in the world. In our book he is the “Top Surgeon in the World.” With our deepest respect and admiration we thank you, Dr. Yeh…
I am alive today because of Dr Michael Yeh.
In 2009, at the age of 55, I began to feel a bit “off” and also noticed hair growing on my upper lip and chin, which I found disturbing. When I discussed my observations with my USC endocrinologist whom I had been seeing every six months for the preceding ten years he dismissed my concerns and said that such hair growth was normal for “a woman my age.” But I knew something was going badly wrong inside me. I made an appointment with my gynecologist who ordered blood work to check my hormone levels. The blood test results showed a surprisingly high testosterone hormone level, so my GYN faxed copies of the lab results to USC and urged me to return to my endocrinologist.
When I called my USC endocrinologist’s office to schedule an appointment I was told by scheduling that there wasn’t an appointment available earlier than my already scheduled routine 6-month check-up. When I finally was able to get in to see the endocrinologist, he ordered another set of blood tests (bringing the total to 3) and told me that I should go see my GYN and have a trans-vaginal ultrasound of my ovaries. He said that a growth on an ovary would not be surprising “for a woman of my age” and would explain elevated testosterone levels. I advised the dotor that I had already had such an ultrasound, but he told me to go back and have another. And thus began the ping-pong game between doctors, culminating in the GYN telling me that if the endocrinologist didn’t order an MRI of my abdomen she would. Only when the two doctors spoke together on the phone did the endocrinologist finally ordered an MRI scan in late summer 2009. The MRI results were devastating — a 7.7 cm mass on my left adrenal gland. The USC endocrinologist called to say that I should make an appointment with a surgeon because “it needs to come out.” He did not tell me that a nearly 8 cm mass on the left adrenal gland was nearly certainly cancerous or that adrenal carcinoma is most often fatal. He didn’t say, “gee, sorry about not scheduling that MRI sooner,” or “no wonder you were feeling poorly and growing facial hair.” No apology was offered, no comment was made about him being incorrect about the cause of my symptoms. Nothing whatsoever. Ever.
Several things bother me about this. The first is that I had been seeing this endocrinologist for over ten years when I first began to develop these symptoms and he knew me well. He knew that I had already survived bouts with cancer, that I had three children whom I adore; and he knew that I was willing to undergo any test, take any medicine, and pay any amount of un-reimbursed medical costs to stay alive. He also knew from his professional training that once an adrenal tumor exceeds 5 cm it is most often cancerous but that smaller tumors are considerably more treatable. Adrenal carcinoma is rare — only 1 out of every 1 million Americans will develop the disease. The USC endocrinologist bet with the house — he knew that it wasn’t likely that what was ailing me was adrenal cancer and he therefore did not test for it. He substituted his own experience and knowledge for my description of symptoms and my GYN’s exams and reports, and this failure on his part nearly cost me my life.
I decided to schedule surgery with Dr Michael Yeh at UCLA. During his initial consultation with my husband and me, Dr Yeh looked us directly in the eye, held my hand, and told us that although the average life expectancy for someone in my situation is two years, “the tails of the curve are infinitely long.” I found him to be brave, unflinchingly honest, encouraging, and compassionate. Dr Yeh’s thorough pre-surgical evaluations of my tumor (urine and blood tests, PET and MRI scans) and his extraordinary skill as a surgeon allowed me to survive my 7.7 cm cortical neoplasm. UCLA uses a team approach, and Dr Yeh assembled a group of world-class doctors (oncologist Dr Steven Wong, endocrinologist Dr. Stanley Korenman) to help me through this incredible journey. Following my surgery in October 2009, I was in the UCLA Medical Center for a week and I’ve been home ever since. My strength returned quickly after surgery, and other than a bad reaction to Mitotane (the chemotherapy drug used to treat adrenal cancer), I’ve felt good ever since. I’ve graduated from having quarterly MRI/CAT scans of my chest and abdomen to bi-annual testing. Dr Yeh listens to me when I describe how I am feeling, orders tests, returns calls, and calls or emails me with results from my frequent MRI and CAT scans. He is without question the best physician I have ever encountered and I consider myself enormously fortunate to have him as my surgeon.
It’s been almost two years now since my surgery (yay!) and I continue to see all three doctors. I am so grateful for their excellent care, and feel encouraged after every office visit. I am convinced that my life expectancy falls on the far left hand side of Dr Yeh’s “infinitely long tail” of survival.
Nice story. Adrenalin survivor of five years
Hi,
I have been diagnosed with a 9 cm tumor on my adrenal gland. What surgical approach did Dr. Yeh use. Where was your incision located?
Dr Yeh performed a left adrenalectomy. My incision is about 6″ long in an arc running from the bottom of my rib cage to just above my left hip. I’ve been tumor free for nearly 5 years now. Best of luck to you.
I found your story to be incredibly inspirational. Thank you for it. I live about 2000 miles away from Dr. Yeh and I’m wondering if I can make the trip and recover there. I’m starting to think that I’m just going to have to see him to have this surgery done and maybe join you as tumor free.
Hi Lisa, I hope you will be able to travel to UCLA Medical Center and have your surgery performed by Dr Yeh. The skill and experience of your surgeon will profoundly impact your outcome. I firmly believe I am alive today because Dr Yeh was my surgeon. Post surgery recovery was surprisingly quick. I wish you the very best.
am 55 years old and was born with neurofibromaticatosis, which is basically a birth defect. I found out through my experience described in this blog, that those of us born with neurofibromaticatosis have a very small chance of developing a pheochromocytoma. Just my luck.
One of my neighbors quit smoking by taking Chantix. I asked my doctor for the same prescription and was asked to come into his office after taking it for almost two weeks. During the visit I was told I had high blood pressure. It was 190/110. I did not have any of the side effects and this caught me by surprise. After stopping the prescription, I went back after two weeks and it was still high. He did not want to give me blood pressure medicine until he knew why it was so high all of the sudden. He ran me through a series of blood and urine tests, followed by a CT Scan. I was diagnosed with a pheochromocytoma on my left adrenal gland. My doctor said he was going to refer me to a specialist but wanted to do some research. He referred me to Dr. Yeh.
I made an appointment to see Dr Yeh at UCLA Medical Center and he agreed with my doctor’s diagnose. When I first met Dr. Yeh, I was impressed with how I was treated as a human being and not just a patient. He explained everything that was going to be done from the moment I left his office until, my surgery and the recovery process.
I began taking phenoxybenzamine and another blood pressure medicine to control the tumor and symptoms until by surgery date. During the entire time, Dr Yeh was in constant contact with me monitoring by blood pressure by email and cell phone.
On the date of the surgery I checked into UCLA Ronald Regan Hospital at 4:30 AM and the surgery was performed a couple of hours later using laparoscopic surgery. The left adrenal gland along with the tumor was removed.
I left the hospital for home the next afternoon. Immediately after the surgery and recovering at home, I never needed to take anything for pain.
My entire journey starting with my own general doctor, My Yeh, UCLA Ronald Reagan Hospital and Dr Yeh’s entire staff was outstanding.
I cannot thank Dr Yeh and his entire staff enough for everything they did for me.
I am a 58 year old female. I have been suffering endocrine adrenal/pituitary/hypothalamus symptoms for almost 10 years. High, uncontrolled blood pressure for 20 years. New medications would work for awhile, but it always crept back up to an average of 160/100 while on medication. I have all of the symptions of a pheochromocytoma or pituitary tumor and have been to the ER 4 times in the last year suffereing from an adrenal type of crisis with dangerously high blood pressure (over 225/140. Last visit 227/135. I have intense adrenaline rushes, fatigue, weakness, hair loss. I am now on Sprironolactone and my BP is low, but I still have the intense adrenaline rush almost non stop for days at a time. I don’t function while this is going on. Today is day 8 since I’ve been able to leave the house. I’m only able to eat, sleep, shower & brush my teeth. I’ve had an Abdominal CT scan and a Brain MRI. They haven’t found any tumors and most of my blood tests results are normal for aldosterone and cortisol. I’ve had (2) 24 hour urine catecholamines tests, One was normal, the other one showed 2 times the high range in one of the categories. My potassium and sodium are low, prolactin high. My endocrinologist just “blew” me off and referred me back to my Nephrologist (kidney & blood pressure specialist). I wasn’t feeling particulary bad or stressed during either one of the catecholamine level urine tests I had. I feel more random urine tests are warranted. I would think that there are huge disparities in catecholamine levels depending on your stress levels or because your adrenals have decided to pump some extra adrenaline into your body that day. I can’t get a diagnosis and I have NO quality of life. I can’t go off my BP meds for any length of time for testing because my BP will shoot up within just a couple of days. Can anyone share a similar story that finally lead to “that ever so elusive” diagnosis that leads you back to a relatively normal life?
The information here is extensive and thorough, thanks so much for providing such expertise!
Today 5/25/2011 two months and three days after my surgery for PheochromocytomaPerformed By Dr. Yeh and his wonderful team of doctors and staff, got my after surgery lab work.
My Epinephrine, U 24 hr value was 3 the reference 0-20.
my Neropinephrine,U 24 hr value was 31 the reference 0-135.
Dopamine, Ur 24 hr value was 252 the reference 0-510.
Normetanephr. U 24 hr was 287 the reference 110-1050.
Metanephrine, U. 24hr. was35-460.
Honestly, I just dont have the slightest idea what they mean. But my Endocronologist Dr. Radha Reddy. was extremely happy that those numbers were acheive.
As I say before when I went into surgery one of those values were up to 2000 and daily secretions that were tortureing me. Today I’m embarking into a daily exercise regiment to rid of minor problems and bring better values on my lab works.
I have to say Dr. Yeh’s Team and staff are great. Saving lives bringing health to patients.
I highly recomend this Department at Ronald Reagan Hospital at UCLA. They are dedicated to saving lives.
THEY SAVED MINE.
Ozzie Srdjan Radakovich
Its hard for me to explain my experience of pheochromocytoma since english is not my primary language.
Please be understanding of the language barrier.
For decades I was in and out of emergency rooms because of those feelings in the chest due to the secretions of the adrenal gland. No one could detect the problem.
Finally my hypertension was so high that I needed help and end up once more in another emergency room, on wich they check my hearth. I told the Dr’s that I have had several nuclear medicine test, angiograms (several)
and ultrasounds, my hearth, I been told was good. I complain that I was taking all those test and getting no answers to my problem. all the symptoms were there for pheochromocytoma and it was not detected.
When its was found, it was when it was at the most critical moment.
I was sent to see Dr Michael Yeh. at UCLA. From the very beginning I was surprised by the good relationship Dr. Yeh and his team of Drs. and staff handle my case. everyone was involved to provide me with a fast response.
When I arrive at Ronald Reagan Hospital I was nearly dead. Dr. Yeh arrange for 2 anestysioligist, the best in the nation and all of his team to be there at surgery.
Today, thanks to Dr. Yeh and all of the other Doctors and all of his staff, sucsefully gave me back my life.
I dont think there are specific words in any language to express the feeling and how can I say thank you all in a big manner?
They saved my life!
Thank you, Thank you, Thank you.
Ozzie Radakovich.
Hello,
I just wanted to post a quick comment on the excellent medical care I received at UCLA from Dr. Michael Yeh and his staff and in particular Dr. Lilah Morris. After a visit to my family doctor he became concerned about my high blood pressure and wanted to monitor it. A couple of follow-up visits later and a 24-hour urine analysis It was discovered I had a pheochromocytoma. I had an initial consultation with Dr. Yeh and Dr. Morris and it was recommended that I have surgery right away. Dr. Yeh explained everything to me and made me feel quite comfortable of what to expect and Dr. Morris kept in touch via email to monitor my medications for pre-op. The surgery was a success and Dr. yeh was there to follow-up after surgery. My blood pressure dropped into normal ranges and I feel great. I highly recommend Dr. Yeh and his staff all who were extremely professional and good at what they do.
Hi I am writing on behalf of my sister Hulya who was diagnosed with right adrenal carcinoma in Istanbul, Turkey on Jan 2010. After consulting with all the top Dr's there and even receiving 4 sessions of chemotherapy we found out that the tumor was not getting any smaller but in fact growing at quite a pace.My wife then found Dr. Yeh on the net and I contacted Yasmin directly. She was amazing and set me up on a conference call will Dr. Yeh and we flew my sister from Istanbul to LA. She then had an 8 hrs surgery performed by Dr. Yeh and his team which removed %90 of the tumor. She was in hospital for 2 weeks before she moved out to a nearby apartment by UCLA medical center. After a 4 weeks rest she then started chemo and radio therapy. Its been 4 months now and the tumor is now under some contol but we know that if we had not found Dr. Yeh my sister might not be around today. He was the only Dr. out of 10s of Dr's I met and talked with who actually knew exactly what he was talking about. He performed this know how in the surgery he and even though he took quite a few organs out of my sister, she was perfectly well after a few weeks. The after care at UCLA was exceptional as well as the other Dr's whom are dealing with my sister as I write this. Dr. Wong and Dr. Lee have taken over from Dr. Yeh as they are trying to kill the tumor with chemo and radio therapy. I think they are all great and I would like to thank them all. Anyone who would want to contact me can do so….
Hi, I am 41 years old, now a stay at home Mom in Huntington Beach, CA. It has been a little over two years since my diagnosis and surgery of my pheo. I was diagnosed during my pregnancy, my daughter was born @ 26 weeks 1pound 9 ounces (she is awesome now 27 pounds and three feet tall, and catching up nicely, no major problems…) soon after I had my daughter I was shipped to UCLA from Long Beach to meet with Dr. Yeh. We had a successful surgery. Dr .Yeh and his staff are wonderful and really helped us through the process of surgery. He came into my room everyday to see how I was doing and if I had any questions. I am on here today because I have been great, but currently having problems, after surgery I had an eco and had an enlarged heart, pulmonary hypertension and a leaky value, as of today all is normal, for the past year and a half I have been running half marathons…recently I had a few episodes of almost passing out after a run and tingling in my arms…I realized that the medication I was on for High blood pressure possible caused this (diuretics), so I discontinued and was off of all meds for three months. My blood pressure slowly crept up and I am having a hard time controlling it. I had gone to numerous cardiologists and have not been able to get the right regimen to lower my blood pressure. One problem is that I have a low resting heart rate 45. My diastolic is over 90 on averages and rises above 100 many times a week my stolistic is on average in the 130s but creeps above 150 every now and then. I am on Norvasc 5mg 2x a day and take .1 of clonodine at night when my blood pressure is highest. I am at a loss on what to do; I have 6 month checks with my endocrinologist and the next test in August. I am going to have him prescribe a 24 hour urine test (haven’t had one in a year) to make sure there are no kidney problems. I am fit but a little over the recommended weight for my height. Any recommendations??? Dana
To Start off I am a 20 Years old with a Genetic Disease called VHL. Back in 2000 I had my Right adrenal glad completely removed. February of this year, I was diagnosed with a Pheo tumor on my left adrenal glad. They found the tumor through a blood test that tests the catacolomine levels. At that time I was 2 months pregnant which was a huge concern to me in making the decision to get surgery or not. My family and I began doing research and found that Dr. Yeh was highly recommended. We then met with him, and discussed what would be the best thing to do. We went on with the surgery and it was a HUGE success. I am currently in my sixth month of Pregnancy and the baby and I could not be any more healthy. I am on a blood pressure medication, and hydrocortisone, which are both safe to take throughout the rest of my pregnancy. I feel great and i couldn't be any more happy with how things turned out for me. Dr. Yeh and his team were more than great to me throughout my stay in the hospital, which was only 4 days, and in explaining my aftercare. I am still pregnant and am due in September. Dr.Yeh and his team werent only concerned with my health but with the health of my baby as well. I hope those of you who read these blogs find them of help, I sure do.
Hi my name is Darren Brown, Im 33 years old, I’m from Belize Central America and had been suffering from high blood pressure for the last 10 years (170/100). For years my doctor has tried treating me with medication and diet but was to no avail. Whenever he seemed to find a medication that manages my BP it only works for a couple weeks and then it goes back high. He passed away and I found myself looking for a new doctor (internist). Upon visiting my new doctor he reviewed my history and started me on a new medication also. After a few visits he said that this isn’t normal and he would like to run some blood test. The testing facilities in Belize were not capable of doing these types of blood test (rennin & aldosterone) so it was sent to Miami. After receiving the results my rennin was low and my aldosterone was high. So my doctor recommended for me to see an endocrinologist. None was available in Belize so I opted to go to Los Angeles CA to seek medical attention. I went to UCLA Medical Center and was referred to consult with Stephanie Smooke MD. Endocrinologist. For four months she was thorough in trying to find out what was really causing my pressure to stay elevated when I’m on medication. Over the four months all sort of test was done (ultrasound, ct scans, numerous blood tests, adrenal venous sampling). I finally got a diagnosis of Primary Hyperaldosteronism. So I was referred to Dr. Michael Yeh to have a left adrenalectomy. I met with Dr. Yeh and surgery was scheduled for 02/02/2010. Surgery was performed on schedule and now am back home. I’m still on medication to maintain my BP but it is in the range of 130/80. I just really want to say a special thank you to Dr. Smooke and Dr. Yeh for the remarkable job that they’re doing at UCLA.
Hi everyone, my name is Katherine and I also feel very blessed to have had Dr. Yeh as my surgeon. My odyssey began last July when I had a gallbladder attack. I went to my regular Dr. right away, and he proceeded to order a couple scans to check things out. That's when they discovered a large mass on my left adrenal gland. For the next 4 months, they continued to order more imaging tests, culminating with a needle biopsy, the results of which were very unusual. The cytologist here was unsure what the tumor was, so she sent my slides to Stanford Uni. for a second opinion. Their preliminary diagnosis came back "oncocytic adrenal adenoma." I can consulted with a surgeon here while waiting for those Stanford results, and when it came back as an oncocytic adrenal tumor, he referred me immediately to Dr. Yeh. I saw him for the first time in Nov. '09 and a left adrenalectomy was performed on Dec 9, 09. It turned out to be quite a bit larger than my various MRIs and CTs had indicated and was in fact "the size of a baseball." (Dr. Yeh.) He was miraculously able to remove it laproscopically and it had not spread at all. I was only in the hospital overnight and particularly my caregiver AnnaBelle and my night nurse Ron took excellent care of me. About 2 weeks after the surgery, I began to notice changes in myself. I had been on HBP meds for about 8 years and had only moderately good presure for most of that time (150/90) The weekend after Christmas, my pressure went down to normal and has stayed there!! Also, I had been unable to sleep well for many years as well and had to take Unisom everynight. I have not had to take any more sleeping pills since!! Also a few other minor things have gone away as well. It is really pretty much a miricle in my book! In retrospect, I wish my dr. had sent me right to Dr. Yeh as soon as this thing was discovered. After having 3 CT's, an MRI an MIBG and a biopsy, it would have saved me a lot of stress, not to mention radiation, if I could have seen Dr. Yeh a lot sooner! Also, I read while researching my tumor, that less then 50 of these things have every been seen! Thank you, thank you Dr. Michael Yeh! I am in better health now than I have been in many years! Katherine, age 51.
My mom was diagnosed with a pheo tumor in her adrenal gland after an MRI was done looking for broken bones from a fall. After diagnosis, I did hours of research and realized just how serious and high risk the procedure is to remove one of these. We live in the Seattle area and there are no specialty centers near us. In my research, Dr. Michael Yeh kept coming up and is who we chose to do mom's surgery. He comunicated with us immediately, everything he told us went just as planned and he is no doubt the best possible choice we could have made. In researching these type of tumors, I kept reading how important the "team" is and not just the surgeon and that they should work together on a regular basis. Dr. Yeh and his team have done many of these pheo's in fact we were just there in January 2010 and he and the team had been doing about 3 of these a month at that time. The Ronald Reagan Medical Center is top notch – patient care is outstanding. We sought out the best of the best for mom and feel we got better than that! If you or a loved one have been diagnosed with a pheochromocytoma, you won't find a better team to provide your care. Mom is 67 years old and from the Seattle area. Her surgery was January 12th and she was released from the hospital the next day and wihtout needing any pain medication! Her tumor was about 6 cm and they figure it had been there for 4 or 5 years. Thank you Dr. Yeh…thank you.
Hi,my name is Jacquelyn, I'm thirty 30 years old and I got diagnosed with pheo two months ago. I wanted to share my experience with everyone from a unique perspective. Aside from being a recovering patient, I am also a physician. I am training to be a kidney specialist. Despite having some medical knowledge about pheo, the diagnosis still came as a huge shock to me. I was scared, confused, sad and of course, all the worst-case scenarios ran through my mind. I went online to read up as much as I could about pheo, talked to many of my colleagues to research the names of good surgeons/anesthesiologists for my surgery. Dr. Yeh's name repeated came up and even before I met him, he instilled a lot of confidence in me and my husband after we saw his lecture posted online. He was very knowledgeable, confident and meticulous so I knew I was in good hands …I had my laparoscopic surgery on September 29th. They were able to take out the 7.3cm pheo with just three (instead of four) incisions. I only stayed in the hospital for 1 night. Two days ago, on October 24th, I ran and finished the Nike's 6-mile Human race. It was a great feeling to be able to get back to my old self again. Looking back, the last two months have been like a roller coaster ride. There were many ups and downs but in the end, I came out a stronger person, a better doctor, and more inspired. So thank you Dr. Yeh and Dr. Hong.
Faye Woods 60 years oldI was diagnosed 4 years ago with hyperparathyroidism. I visited 2 Endocrinologist's, who could not find the source of the problem after several MRI's. Aside from feeling poorly, the side effects were getting worse.I couldn't concentrate and depression was setting in. I couldn't imagine living the rest of my life like this. I heard about the work of Dr Yeh and decided I had nothing to lose by going for a visit. Within five minutes he did an ultra sound found the obstruction, and within 2 weeks I was scheduled for surgery. The surgery was simple I was up and around within a hour and my calcium level was normal immediately, and back to work within 2 days.. (by the way a small one inch scar, as opposed to the huge six inch incision that I was eventually facing) By the end of the first week aside from physically feeling better, I realized I didn't feel so sad and depressed. This has been the dream outcome! Thank you Dr Yeh…
Hello Fellow and Potential Patients.My name is Randy. I am a 60 year old man from Las Vegas, Nevada.I’m 5’7” and at the time of my operation I was close to 270 pounds. I was diagnosed with high blood pressure, diabetes Type II, and problems with potassium loss, protein in urine, and constant urination. Although I felt fine, I was using many prescription medications to try and keep my body chemicals within normal standards.Dr. David Gothelf, my family practice doctor, would refer me to the appropriate specialist whenever a new chemical standard was exceeded. I soon was seeing Dr. Robert Merrell, a kidney specialist, for protein in my urine, and Dr. W. Reid Litchfield, an endocrinologist, for the diabetes.Dr. Merrell suspected that many of my problems were caused by Aldosteronoma. For you and me, that means some sort of growth on one of my adrenal glands. Dr. Merrell sent me for a contrast MRI of my adrenal glands and he was dead on. Results showed a small growth on my right adrenal gland.Dr. Merrell said that the good news was that growths of that type are typically not malignant. The bad news was that it still had to come out. An operation.An operation that, because of the location on the right adrenal gland, was usually (at least in Las Vegas) was accompanied by a major incision, a week in the hospital, and a six to eight week recovery time. A growth on the left adrenal gland could usually be removed by laparoscopic procedure. Overnight in the hospital and back to work in a week. I declined the operation and decided to continue working, popping pills, traveling to doctors, and urinating constantly. Eventually I decided that I had to proceed with the operation. Faced with the inevitable, I researched my situation on the internet.I found the UCLA Endocrine Surgery website. The information on the website indicated that right-side laparoscopic surgery could be done by Dr. Michael Yeh.I consulted with all three of my doctors. Dr. Litchfield sent me for another MRI. The results indicated the growth was approximately the same size as the previous MRI six months before. All of my doctors felt that surgery for me at UCLA was an excellent idea and strongly recommended it. After the research I had done, I was very, very confident that UCLA was by far the best choice for doctors and facilities.I contacted Dr. Yeh’s office. I had a telephone consultation with Dr. Yeh and was given a pre-operation package to submit to my doctors. In a short time, I was deemed eligible for the surgery and scheduled to meet Dr. Yeh at UCLA. I met Dr. Yeh on December 2, with surgery scheduled on December 4. He introduced himself as “Michael Yeh”. No doctor, no pretense. Very upbeat and friendly. And very, very young.I found later this was true of the entire doctor staff at UCLA. All closer in age to my grandkids than to me. And if you think this is a problem, just think about who you ask for help with your computer. That’s right, your kids and grandkids. And good luck trying to beat them at a video game, something that takes a lot of hand-eye coordination. Sort of like surgery.After my consultation with Dr. Yeh, I had a few more tests the next day and prepared for surgery on December 4. I was scheduled for surgery early in the morning. Due to unavoidable circumstances, I didn’t get into the operating room until about 5:00. My wife and daughter took turns keeping me company.Just before the operation, I received a visit from the anesthetist. She was a young, very attractive doctor who assured me that they were prepared for any contingency, and that another anesthetist would be in the next room for consultation and assistance. I was given a shot of something and the next thing I remember is the anesthetist (I think) telling me everything went well. I think I was in my room by 10:00 PM. During his consultation with me in the hospital room the next day, Dr. Yeh confirmed that everything had gone according to plan and that my chemical levels were now in much safer ranges.There was some pain I didn’t expect in my shoulders. It was uncomfortable enough that I took pain medication for it. I was told that the shoulder pain is common with laparoscopic surgery. I had minimal discomfort in my stomach area and none at all around my 4 incisions, even when I pressed on them. I got a shot of morphine around 12:30 AM and two more shots at 2 hour intervals. After that I was given a couple of Vicodin tablets every 6 hours if I asked for them. Once I went 12 hours before taking the Vicodin to try to sleep the second night. After the second night I was discharged from the hospital and on my way back to Las Vegas at 11:00 AM.The ride back was uneventful, but upon reaching Las Vegas, I had some minor discomfort that lasted that night. I only took 2 doses of the Vicodin at home, and then switched to extra-strength Tylenol. Afterwards, there was significant reduction in discomfort each day.One week after the surgery I was back at work. If I did not know and didn’t have incision scars, I would not have known I had surgery. I am also taking a small fraction of the medications I was taking before the surgery and my blood pressure and chemical levels are much, much better.If you have any questions or would like further information, I would be happy to call you if you forward your telephone number to Dr. Yeh and his staff.
My experience with a pheochromocytoma in my left adrenal gland started in a rather suttle manor around May 2008. My first symptoms were a pulsing feeling (like a motor running) inside my abdomen area that was sporadic at first. This pulsating feeling seemed to increase and would preceed any type of stressfull situation I encountered. I also noticed that eating a meal left me burping and belching constantly, sometimes to the point of embarrassment. When my heart started racing during my nightly walks with my husband and our dog I would stop and rest to catch my breath. This was very alarming for a person who has enjoyed hiking and walked daily for exercise. There seemed to be new symptoms with each passing month, headaches, awful back aches, a strange patch of greyish, brown pigment at my left palm, and the feeling of panic which caused me to over analyze just about everything in my life. I was no longer happy and relatively care free I had changed emotionally and found myself crying alot. Thus began my long, frustrating odyssey into the medical world of many doctors and several tests thru my Santa Barbara clinic where I was a member of this network. I started with my G.P. who didn’t know what all these symptoms indicated and referred me to a cardiologist for a complete work up including an injection of nuclear medicine and a walk on the treadmill. This test showed that my heart was actually healthy…no problems there which was a relief. My symptoms persisted and I visited my OB/GYN doc and had a pelvic ultrasound done…this was uneventfull too. I then visited an internal med. doc who carefully took notes of all my unusual complaints and ordered lab work and a CT scan of my abdomen. This scan did show a 2.6cent growth in my left adrenal gland and some diverticulosis. And the blood work indicated that I have the cytomegally virus. The doctor was not very concerned about this growth and prescribed for me an antiviral med. and antibiotic for the diverticulosis and beta blocker for my racing heart. I followed thru with these meds. and my symptoms continued and more visits to the internal med. doc who was getting frustrated with me …he actually fired me as his patient. But, he did refer me to an endocrinologist within the network who zeroed in on the growth in my adrenal gland. I only saw him once for about 20 minutes and he ordered more test, urine, blood, and an MIBG scan. These test did indicate that I had a tumor referred to as a pheochromocytoma. At this point I tryed my best to learn about this unusual, seven syllable word tumor and how to proceed from here. The endocrinologist was too busy to see me again and referred me to his P.A. who was also quite busy and forgot to call in a prescription of a medication called phenoxybenzamine which I was supposed to start prior to surgery. I went to visit the general surgeon on a Thursday morning in Santa Barbara and asked him up front just how many pheochromocytomas he had removed? He was pretty aloof about this and never did give me an exact number, and then he suggested that he could remove this on the coming Monday as he looked at his surgery schedule. I actually lied to him when I said that I was superstitious about having surgery on a Monday and could we shoot for a later date. He agreed to this and I was set to go for surgery three weeks later on a Wednesday. Meanwhile I had just started taking 5mg of the phenoxybenzamine after much difficulty finding a pharmacy that would compound this. The more I learned about this rare tumor the more uneasy I felt about the treatment I was receiving and the lack of trust in this general surgeon whom I had met only once…too many unanswered questions and doctors who were just too busy to answer them. It was a Sunday night and my sister was visiting me at my home and I relayed to her my fears and frustration with this situation. She immediately asked me why I didn’t go to UCLA….her husband had been treated there by a Dr. Koo who performed a very complicated back surgery two years ago. She told me to call my insurance company and explain my situation and ask for a second opinion at UCLA. I did call the company early the following morning and spoke to a representative who okayed an appointment with Dr. Jason Fish and I was off that same day for a lucky opening with him (he had a cancellation) My visit with him gave me a sense of security and that he definately thought I should be seen by a specialist for this type of surgery and started the ball rolling. He walked me into a room with an insurance girl and told her to call my insurance company and to tell them this was urgent. He also referred me to Dr. Michael Yeh, a neuroendocrine surgeon with alot of experience with these tumors. I saw Dr. Fish on Monday morning and was taking to Dr. Yeh on Tuesday morning by phone. He asked me about my doseage of phenoxybenzamine and explained that I should increase this medication to insure a safe surgery. He then called in a new prescription of this med. and I started the increase from 5mg a day to eventually 30mg a day Dr. Yeh saw me about a week after our phone conversation and explained how he would do the surgery to me and my husband. He answered all of our questions and even drew a diagram of the anatomy of the adrenal gland and how it would be removed. He also ordered a specific scan to show if there was any more involvement with this tumor before he went in sugically. This was a time consuming scan that day which took several hours while my husband visited the gift shop and had lunch in UCLA cafeteria which he really liked.The latest scans showed no extra involvement and my surgery date was set for Dec. 8th with Dr. Yeh. My husband and I both liked Dr. Yeh from the start and I finally felt like things were going to be okay for me and maybe there was a happy ending to all these months of medical madness. Interestingly enough my surgery was on a very early Monday morning, we left our home about four am to get to UCLA….no traffic that time of day just like Dr. Yeh had said. The new hospital at UCLA is very modern, clean, and soothing colors in the preop room. My preop nurse, Melinda made me feel very at ease and the team of doctors headed up by Dr. Yeh all seemed very upbeat and ready for the surgery. This was also reasssuring to me, with the overload of adrenaline in my system I needed all the positive reinforcement I could get. I don’t remember anything after the preop itself, the surgery went well, no complications. I awoke in the recovery room and was watched over by an angel of a nurse named Teresa and later that afternoon went to my room where I spent the night. My laporscopic surgery was relatively pain free, and I didn’t need any painkillers at home. I feel incredibly lucky to have been treated at UCLA, Dr. Yeh was the most approachable, effective proffesional that I could have found. His amazing expertise in this specialized field is quite rare like my tumor and I thank god for steering me in his direction. I have returned to my job as a medical esthetician and I have returned to my nightly walks with my husband and sweet golden retriever, Life is good.
Hi. My name is Steve, I am 53 years old, and I live in Las Vegas. Please allow me to tell you about the best decision I’ve made in my life.After waiting months to get an appointment to see a Gastroenterologist, I finally saw one in May of 2008. I told him that I was having mild pain in my left abdomen for about one year, as well as some groin pain for a few months. I thought I probably had some diverticulitis, and I figured that I’d need a colonoscopy; but, I also asked the MD for a CT Scan just to make sure I didn’t have a growth somewhere. Well, I had my CT the next week; and, within a few hours of getting the CT, the MD called me to say that I had an enormous growth on my left adrenal gland, that he couldn’t do anything for me, that I needed it surgically removed “yesterday,” that this could kill me, and that I should contact my Internist for further guidance. Imagine my shock!So, I immediately contacted my Internist. He ordered some bloodwork and told me to make an appointment with a Surgeon ASAP. I asked him if there were any Specialists and if I should go to a Teaching Hospital; my MD basically said “a growth is a growth…any Surgeon can deal with this.” Then, he proceeded to give me the names of 3 General Surgeons and told me to just take whichever one had the earliest appointment available. I quickly made an appointment with one of them. Then, true panic set in.I was so upset by the unconcerned, cavalier treatment that I had gotten from my MDs that I began making phone calls to every MD I knew (in different cities). Unfortunately, none of them even knew that there is a Specialty of Endocrine Surgery. Thankfully, though, one MD (a General Surgeon) told me that he would NOT let a General Surgeon do this operation, and that I definitely should go to a Teaching Hospital.After 2 days of frantic searching on the internet, I LUCKILY came upon a web-link to UCLA and Dr. Yeh–my eyes almost popped out of my head–I was crying with sheer joy! The next morning, I made an appointment to see Dr. Yeh…and this was the best decision of my life!Final Notes: I had MAJOR surgery on May 22nd. I had an adrenocortical carcinoma and a few other problems. My Recovery has not been easy. I am preparing to begin chemotherapy as soon as possible. And, I am moving to the L.A. area in 2 weeks in order to be near all of my new UCLA MDs.Bottom Line: Dr. Yeh and the Team of experts he has assembled for me clearly saved my life. I honestly don’t think I’d be here right now if I had gotten my surgery in Las Vegas–it’s that simple. I look forward to further contact with my UCLA Team–they are nothing short of being Kings and Queens to me!!!
How are you doing today I’m a five year surviver
Hi, my name is Russell. I recently turned 17 and am enjoying my junior year of high school. In September of 2007, I was diagnosed with hypertension after playing with one of those blood pressure measuring machines at a local chain drug store with my cousins. An appointment with a primary care physician turned up another condition called neurofibromatosis type 1 (NF-1) of which I was unaware. This led my doctor to consider a possible cause of my hypertension, that being pheochromocytoma. I found out that people who have NF-1 have a higher incidence of pheochromocytoma than the general population. My 24 hour urine collections did show certain indicators where slighly elevated and an MRI and CT scan were performed at a facility in the Inland Empire. A very small mass was detected by the radiologist and the possiblity of surgery was raised. My parents decided that if surgery was necessary it should be done at UCLA, even though by dad is a die-hard USC fan. We were referred to Dr. Yeh. Dr. Yeh is the one to see if you need a physician. His knowledge is impressive but more than that is his down to earth style and manners. I felt comfortable with him as he described what was ahead. He made sure my parents and I understood my possible condition, treatment options, additional tests and timetable. He understood what I was facing in my academic schedule with SAT and college considerations. He explained that the medications necessary prior to surgery would wreak havoc with my sleep and study habits but assured me he would try to minimize this impact. Well, surgery was scheduled for just before Christmas but Dr. Yeh continued to run test to try and confirm the pheo diagnosis since most of the previous test came back with slight elevations. Whereas, large jumps are more common as are certain symptoms, such as sweating, palpitations and headaches. I had occasional headaches and people would complain about my sweating. But, not to the level Dr. Yeh would expect. Dr. Yeh decided he wanted to perform a CT scan using a state of the art device, it was called a 18f-dopa PET CT, which should have no problem confirming a mass. I was told that this machine is very rare, with one at UCLA and at NIH. That was impressive. That’s the other reason to come here. You want the best equipped hospital. However, this came back negative, so Dr. Yeh decided to have me run a MRI and also check for renal artery stenosis (another cause of hypertension) at UCLA. Everything came back negative. You could not imagine our relief and surprise. My surgery was cancelled and I followed up with a new primary care physician who is now treating me for essential hypertension. I want people who read this it understand, Dr. Yeh prevented me from having an unnecessary surgery. He could have accepted the previous scans and with the slight elevations in my labs and performed the surgery and only then find out there was no mass. His persistence saved me. I know that if I did need surgery he would have been the right choice. I also want to mention Yasmin in Dr. Yeh’s office. She was always on top of everything. Scheduling and acquiring prior authorizations for any procedure and visit. Without her, it would have been a frustrating and time consuming experience.
Hello everyone.My name is Flora and I reside Southern California. I had been suffering from a pain in my left abdominal area for about a year which started to get worse and I finally decided to see my doctor about it. On October 10th 2007 I visited my PCP. I was sent for an ultrasound and blood work. On October 12th the ultrasound revealed a mass between the spleen and the left kidney. On October 19th I was sent out to have a CT scan which verified a large mass in the region of the left adrenal, but was unable to determine the exact location. On November 1st 2007 a biopsy was performed and eight days later they could not determine whether the mass was benign or malignant. On November 9th my husband, two of our daughters and I had a consultation with my PCP who told us that the mass was benign. I was referred to a general surgeon, who also told us that the mass was benign, who recommended surgery. The consultation lasted only 10 minutes. At that point I requested from my PCP for a second opinion at UCLA with Dr. Michael Yeh who my husband discovered from this blog site. The request was denied by the medical group. I was given a referral to go see a local Endocrinologist but was given an appointment date of January 9th 2008. I chose not to go see this doctor because my health was deteriorating and later found out that he was not even a surgeon. After all this the denial was overturned and I made an appointment with UCLA for December 4th with Dr. Yeh. Dr. Yeh’s office asked me to bring medical records from the tests that were done. My husband, two of my daughters and I had a 45 minute consultation with Dr. Yeh, by looking at the CT scan report he was able to determine that the mass was in the adrenal gland and was malignant (cancerous.) Dr. Yeh also noticed other symptoms of adrenal problems that were missed by my PCP and the general surgeon that I was referred to. At that point Dr. Yeh recommended surgery as soon as possible. The surgery was performed on December 17th and everything went well without any problems. At this moment I am doing fine, but still recovering. I have my third surgery followup on the 25th of March. My family and I are very thankful to Dr. Yeh and the team of doctors involved. Also I must not forget Yasmin Ezedine for all her help. Thank you all so very much from the Rivera family!
1981 at the age of 30 I had an extreme headache, and ultimately was admitted to a hospital in Sacramento. My doctors diagnosis was pheo, but it took a couple weeks of tests to confirm it. I had my right kidney and adrenal removed, but I guess surgery in 1981 did not have the sophisticated anesthesia used today, the pheo caused some problems. Well, for 20 years everything was great, living a normal life, with no restrictions, but then my BP was raised, and a 24 hour urine test confrimed the pheo had returned (2002). I went to UCLA, and Dr. Van Herle (Endo) worked with Dr. Belldegrun (surgeon) to perform a partial left adrenalectomy, leaving a part of the adrenal hoping it would regrow. Well, this may have been in retrospect a mistake, as the adrenal did not regrow, and in fact the pheo returned, this time in force. Several of the tumors were all over the place in abdomen. Then in 2006 I had again gone to UCLA for tests and follow-ups, and it was looking likely that this time UCLA would simply have little choice but to remove the remaining adrenal tissue and probably the remaining kidney as well. It was at this time that I very fortunately met Dr. Yeh. I have never had such a patient advocate as Dr. Yeh, with his true sense of care, concern, knowledge, and esteemed skills. Through his persistence and advocacy, I postphoned a planned surgery, such that Dr. Yeh could have the time he needed to put a comprehensive plan together. This took him a couple weeks, and then I was scheduled for a very complicated surgery. I was very worried about losing my kidney, which was iffy at best. I arrived with my wife at UCLA around 5AM, and ultimately went out the door headed to surgery about 8AM very relaxed. Dr. Yeh and the kidney surgeon specialist Dr. Lipshutz met me just prior to wheeling me out, and having them there was most calming for me and my wife. Well, surgery was about 12 hours, with I think 4 seperate surgeons, where my kidney was actually temporarily removed, where it was taken out so the abdomen could be cleaned of several tumor masses, and a couple masses on the kidney could be removed. The kidney then was put back in (auto-transplant), but in a different place. I guess re-attaching the kidney was a one time only shot, with very little vein left to attach, but Dr. Lipshutz was most skilled and the kidney took. It is over a year now,, and I use it regularly. Unfortunately some of the new pheo tumors were not in places they could be surgically removed, so I came out of the 12 hour surgery, knowing I had a long road of added treatment. One of the troublesome tumors was in my spine (T-8), and initially Dr. Yeh arranged for radiology treatment, but after one treatment it was stopped becasue the tumor was dangerously jepordizing my spinal cord. I was referred to a spine surgeon, who I say in about 2 days, then in another 2 days I was in the hospital (6 months after the 12 hour surgery), and Dr. Khoo (another amazing good doctor) very skillfully removed the T-8 vertebrea. Spinal surgery is painfull, but recovery was quicker than the abdomen surgery. So Jan I had the 12 hour surgery, then in June the Spinal surgery, but tumors still existed. I was hopefull to be admitted to a clinical trial expressly for Pheo’s, and ultimately I was admitted. The trial was through UCSF, and Dr. Fitzgerald, another very dedicated and skillful doctor I was so very lucky to meet. This was August, I was injected with high dose radioactivity, and for about three days I was referred to as being HOT (not the kind of hot one might like). No visitors, almost no human contact for 4 days. Since that treatment, the tumor masses have shrunk to some degree, but still exist. The full radioactive effect will not be known for another 6 months or so. So as it goes, I still have pheos, with possible added radioactive treatments (either clinical trials, or other),possible more surgery, who knows. The only for sure is the kind and generous effort from Dr. Yeh who I am truly grateful for knowing. I will write more, and stay tuned for entries from others.Enjoy today, for too soon it will be yesterday.
I am a 30 year old male and I was diagnosed with an aldosteronoma over this past summer. Here’s my story: Since I was 24 I’d had very high blood pressure, and over the past couple of years it had become extremely high. Medication was not helping at all and I was told to “lose weight,” or “cut back on the salt.” I was also experiencing cramping in my legs and feet, especially after I drank beer or coffee. It felt like a chore to walk for 30 minutes because I knew that I’d be sore and tired afterwards. In late May, after a weekend of white water rafting with friends, I found myself completely unable to move. I was taken to the ER with a blood pressure that registered over 200, and was found to have a potassium level of 1.6 (normal range is 3-5). After several tests, I was diagnosed with a tumor on my left adrenal gland. Jump ahead a few months of delays with another specialist (not from UCLA) and I was fortunate enough to come across this very website. Only one week after meeting with Dr. Yeh, I underwent a unilateral adrenalectomy for an aldosteronoma. Since the surgery, I am feeling 100% better. I am able to work out without feeling exhausted, and I have lost some weight. I also find that I handle stress much better now that my blood pressure is greatly reduced. I am busy preparing for my December wedding, and I am so thankful to be “cured” just in time. Dr. Yeh is an excellent physician and surgeon, and I would highly recommend him to anyone with a similar condition. He and his entire team (special thanks to Jasmine for working so hard to get me scheduled for some last minute re-testing) are extremely professional, and they definitely substantiate UCLA Medical Center’s consistently high rankings. Thank you very much Dr. Yeh. Daniel
I was diagnosed with Cushing’s Syndrome after 5 years of being misdiagnosed. For my entire adult life I was in good health. Almost overnight at around 45 years old I developed high blood pressure, high cholesterol, osteoporosis and a skin disease no one could figure out, I was told it was old lady skin. I gained weight at an alarming rate while working out and only a 900 calorie a day diet. Finally I became so frustrated with my doctors I contacted UCLA’s Dept of endocrinology. I met with Dr. Dorothy Martinez and learned that my blood pressure medicine could have masked the results of previous 24 hr urine tests. I had two tests done at UCLA , a saliva test and a 24 hour urine test. Both showed high levels of cortisol in my system. A CT scan found a small tumor on my adrenal gland which ended years of frustration and feelings of failure. My disease had a name, Cushing’s. I then met with Dr. Yeh and on 1/29/07 he preformed surgery, laparoscopic adrenalectomy. After only one day in the hospital I was sent home and told to walk as much as I could. I felt so good that within 2 days after surgery I was walking around the mall. Finding the correct amount of prednisone to take was tricky, too much and I had insomnia and anxiety, too little and I was very depressed and achy. Today I am on 5mg of prednisone and hoping my other adrenal gland will awaken. My scars are so minimal I even wore a bikini this summer. With exercise and eating right I’ve lost 35 pounds. Now turning 50, living in Woodland Hills, CA I can finally say I’m back to being me. Learning how rare Cushing’s is I hope some day to meet other Cushing’s survivors and learn if they have similar stories.
On August 6th I underwent a 5+ hour surgery for an incidental right adrenal mass. My mass was found by accident, or I know by God. I had sciatica at the end of March on my left side and went to go see my family physician, Dr. Oei, she ordered a XRay for my back and saw something which she wanted to further investigate. I then went to get a CT Scan and my mass was discovered, it was a 12x16x17 cm mass which I did not know was there. I was then sent to a Endocrinology Specialist in UCLA and he ran many tests as I finished all my tests he determined i did not have a adrenal disease. At that point he noticed the size of my mass and sent me to see Dr. Yeh. I was able to see Dr. Yeh immediately and during my visit it was determined that I needed surgery immediately since the mass was very large. During this whole time visiting the specialist and Dr. Yeh I have not experienced any symptoms and therefore finding this mass was truly God. This mass pushed up my liver and pushed my kidney down to my pelvis. Dr Yeh performed the surgery laparoscopically, which originally it was planned to open me up completely. He made medical history because a mass this big had not been taken out laparoscopically before, Dr Yeh said it was the size of a football. I was in the hospital for 3 days and I felt great. I am healing and feeling great and the mass was benign. Dr Yeh does not know how my mass got there and why it appeared above my adrenal gland. I do feel better though and now I know I did have some symptoms because I do not have them now. Dr. Yeh is an amazing Dr. and his staff is great as well. I look forward to the coming months and see how I will feel later. The only thing that continues to nag at me is how the mass got there and will it come back later.
Hello everyone, Im George, I am 39 years old, I am an insurance agent and reside inCalifornia, and im here to share with you my Experience with my disorder, the treatment, andRecovery for my Adrenal tumor and Castleman’s Disease.About four months ago, I was in bed sleeping, and Had woken up with a very distinct pain in my abdominalArea. It was a sharp burning sensation that was unbearable!!After going to the emergency room and being the recipient ofA CT scan, the emergency doctor said “I have good news andBad news” The good news was that I had a kidney stone, the bad news wasThat I had a tumor on my kidney. He had advised me to admit Myself the hospital immediately and have the tumor removed. At the time my father was on his deathbed in a near-by hospitalDying of renal disease, apparently renal disease runs in the family.I had many relatives pass away from kidney failure, being they were in Another country they did not have the medical attention that we haveHere, we are so blesses – regardless what everyone complains aboutWe still have one of the best medical systems in the world.So, with my father in peril, I felt that my tumor, that was the size of a Tennis ball, was going to have to wait until I was able to see my general Doctor. I thought that since it was the size that it was, a few more weeks Was not going to make things any worse. The emergency doctor told me That it would have taken many years for this to get to the size that it did.My back pain levels were relatively high for the past two years, but were Attributed to my strict workouts by my general doctor. I visited him on Numerous occasions in the past for the pain I was enduring. I stopped working out for a few weeks, but the pain persisted, it felt As if I had pulled a muscle in my mid to lower back, the pain radiatedDown to my leg at times causing me to limp occasionally. The following week, after my emergency room visit, I was able to see my Doctor and showed him the CT scan that the emergency room took. He ordered several other scans and blood tests and referred me to a Urologist, I have a Blue Cross HMO..After several weeks both doctors had agreed that, my tumor was somethingThat they were unfamiliar with, saying that adrenal tumors were something that They saw once every few years and were never the size of the one that I had,at that point, they agreed that I was a good candidate to go to UCLA as they specialize in “General Endocrine Disorders” This is my first experience with UCLA, as I have never been operated on or had Any major health issues in the past. I have always been a healthy athletic Person that rarely got a cold or flu, and always got plenty of sleep and paid close attentionTo what I ate, did not have high blood pressure. I did however go on a low carb diet for several years; I did it to become lean.I did not have a weight problem, but was trying to become more defined.Once I went to UCLA, I was first introduced to Dr. Raymond, but after a fewTests he decided that..Dr. Yeh would be more suited to treat my disorder.The day that I met with Dr Yeh, was the same day that my father passed away, it wasA very say day.. That day was a blur, but the one thing that I do remember isMeeting Dr. Yeh. He first had an intern come into the examining room and asked me Several questions, she left the room and came back in with Dr. Yeh. He and several others examine me and had them give their opinions on what They thought it was. It was clear to me that Dr. Yeh knew exactly what ailed me.Mind you, this is three months from the time I was first diagnosed with this tumor, It was the very first time that I felt that someone knew exactly what I was talking about.Dr. Yeh told me that he sees adrenal tumors all the time, but not always as big as this.Dr Yeh ordered some additional test, a 24-hour urine, and a PET CT scan.In the meanwhile, he gave me some meds for sleep and pain, he assured me that Everything was going to be okay, but that there was a thirty percent chance that I was Going to lose my kidney and or adrenal gland. I was very concerned about losing my kidney fearing that I was going to be a Dialysis patient one day as my father – but with one kidney. Dr. Yeh assured me that if I did Lose the kidney that I would live a regular normal life as long as I kept my bloodPressure and weight at a normal level.Two weeks had passed and all the tests that he ordered were complete.I had an appointment, pre-operation visit, with Dr. Yeh. He showed me what He saw on the PET CT, he said that it appeared to be a PheochromocytomaTumor. He drew me a diagram and showed me where the tumor was located.The only question was what the tumor was attached to, it was first thoughtThat it was on the kidney, then after the first MRI it looked as if it was on the adrenalGland, but after the PET CT, it appeared to be on the kidney again. It was in a very difficult location to see clearly, and ultimately would be determinedWhat the tumor was attached to once they got inside during the operation.I expressed great concern to Dr, Yeh about losing my kidney, for some reason losingIt concerned me. Dr. Yeh assured me that he would do everything possible To save it, but if it had to be removed it was something that was necessary.Dr. Yeh told me that I was going to have to trust him, and that he was not going To remove the kidney unless it was necessary, and that he would do everything to Save it. I felt at peace with that, again I felt that Dr. Yeh completely understoodMy concerns and just knew what I was going through.The following week I met with the anesthesiologist, she asked some basic questionsRegarding my current pain levels, the amount if pain medication that was taking daily,The levels of my pain in the past and how frequent the pain occurred.She also asked if I smoked, which I did at the time and has for several years.She instructed me that on the night prior to the surgery not to smoke, In addition, that I was to be on a 12-hour fast, no food or liquids prior to the surgery. The day of the surgery I was extremely tired, did not sleep at all even though I tookAn Ambien that night. I was scheduled for surgery at 7:30 am and I was to be there Two to three hours in advance. One of the most crucial factors is having a support team the day of the surgery, of course Im referring to my friends and family. That day I had my entire family with me and few goodFriends as well as my girl Mary. Without a doubt, they were one of the most important elementsTo getting there with confidence and knowing that everything was going to be fine.Once arriving to the hospital, I checked in and waited with several other patients for approximately an hour, it was just the basic sign in process, which was the hardest part.Just waiting and knowing that in a few hours, I was in for a five-hour surgery. It was Similar to me as a roller-coaster ride when you are at the summit and are about to fallSeveral stories, you know everything is going to be okay at the bottom, but the anticipationAnd anxiety was somewhat nerve-racking..One I checked in, and led into pre-op, which is where they get you ready for what is to come, this is where it is imperative to have as much family support as possible. Before long, some of the interns that were working with Dr. Yeh greeted me and started to Anesthetize me, but I really did not realize what was going on, that they were giving me Something to calm my nerves, but not to put me to sleep. I did feel a calming effect, but was not Passing out or feeling really worried at that point. After about thirty minutes I started feeling very relaxed and the anxiety was gone, I actually felt happy! I started my journey to The operating room. Honestly I really don’t recall anything else about the surgery, it was apparent That I was completely anesthetized and was starting to fade into the unknown. I envisioned that There was going to be some build up to “putting me under” where you thing they are going to put A mask over my face and have me count to ten, but not here. I was just knocked out =) I was happy that it went this way; it was the best way for me to begin this procedure. I knew that this was going to be a somewhat long procedure; the room was booked for five hours.However, to be very honest, I did not feel ANYTHING! All I remember was being wheeled into the operating room, and then I woke up in the recovery room. I felt like it was literally a few seconds from both points. It was hard to believe that almost five hours went by.When I woke up I felt groggy and totally out of it, I felt a little discomfort in my throat, I had a Breathing tube – it was removed – never even saw the thing, just knew it was there at one time.What I remember the most at that point was a nurse trying to wake me up, I was coming to the state of consciousness again. I was just lying there in “twilight” trying to comprehend what just happened. After an hour, I was quite awake, but comfortable, I had plenty of Morphine in me to Not feel anything, no pain, just very tired and lethargic. I just wanted to lye there and do nothing.Shortly after they wheeled into my room, of course the details are a bit fuzzy, I do not remember half of what I said or was thinking, I was just glad it was over! While in my room, my family and friends greeted me. It was around that time that Dr. Yeh walked into the room and started talking to me, he asked me how I was feeling and told me that he successfully removed the tumor, AND SAVED THE KIDNEY!!!He did have to remove the adrenal glad, but I still had my kidney. I just remember saying a Thank you prayer to God on the spot, and thanking Dr. Yeh. I cannot describe the feeling of relief that I felt at that moment. I spent three days at UCLA recovering, my procedure was done laparoscopically which was a Minimally evasive procedure, which allows faster recover and less chance for infection. I have four holes on my left side, which stretched over an eight to ten inch area. Since I have an ample amount of body hair, these incisions will not be noticeable soon.The first day was the most painful; after the anesthesia wore off, they gave me a regiment of Morphine via drip, which alleviated the pain for several hours.The pain that I experienced was not in at the operation site, but strangely in my shoulder joints.The reason being is when you have a laparoscopic procedure you are injected with air or some Type of gas like a balloon so that they can get to what needs to be operated on. The challenging Part is getting all of that “air” out of you; I felt air bubbles in my joints that caused the pain, not the area where he cut.The second day was much easier; I had my urinary catheter removed and was able to walk to the restroom and short walks through the hallway. Eating was a challenge, I ate just a Popsicle the first day, but the day after I was able to eat a few bites of food, hospital food is not bad at all, do not know where that stigma started, I ate better there then when I was at home.The third day in the hospital was the day I was actually released; I had relatively low pain, still some joint and throat pain, but not bad at all. The operation sites ached just a bit, but not nearly as bad as I would have imagined.Upon arriving home, I spent three weeks away from work, from what I understand, back in the day, this would have taken several months to fully recover from.The first few days at home I didn’t do much, basically stayed home and walked to my mailbox, occasionally took a pain pill, only at night as I would roll over on my “bad side”On the third day home, I was able to drive myself to the market and do some very basic tasks around the house. I did notice that I would get fatigued easily, after an hour of any activity I wouldFeel like lying down to rest.By the second week, I felt almost completely healed, the stitches were almost dissolved and virtually no pain at all, I was able to sleep on my side with no problems. On the third week, I was able to start lightly working out, just cardio and some stretching exercises. I was able to go to the movies and sit up without any fatigue. I returned to work after three and a half weeks, no pain at all.Now I am fully functional, working out with light weights and walking a mile a day. I am completely healed. I have no pain as I did pre surgery, my limp is gone, I have notFelt this healthy in years! After the Biopsy, it was revealed that I have what is called Castleman’s Disease.Castleman’s Disease is a rare disorder characterized by non-cancerous (benign) growths that may develop in the lymph node tissue throughout the body. My case was unique because the tumor grew on the adrenal gland, usually these type of tumors grow in the neck area.Luckily this was benign.The stress of knowing that I had a major problem has been lifted, life is good again.I know first hand that this type of disorder can be very stressful, both mentally and Physically. The key points that helped me were,• Talking to my doctor openly about my concerns, Dr. Yeh is an awesome listener.• Talking to my friends, I would call them at night and chat about anything, it helps get you mind off things.• Keeping as active as possible, taking long walks outside in the evening with an IPod, I think music is one of the best medications.• Keeping a positive attitude is key, always look on the bright side and know that this will be a new beginning; you are always given a second chance, take advantage.• Know that if you are reading this, you are getting first hand advice, this is not as bad as you think, you are in great hands and everything will be fine.• And if you are religious, pray. Pray everyday, God will see you through this no matter what!• Research the internet, knowledge is power, one of the most helpful sites I visited was http://www.castlemans.org/If you suffer from the same ailment, and have any concerns, feel free to email me with any questions, my email address is gkhilla2001@yahoo.com. I’ll be more than happy to answer any Questions or concerns you have. =)George.
• Your diagnosis and how it was madeAdrenal Cortical Carcinoma, very anemic and hospitalized• Any challenges you may have encountered in trying to find appropriate careI am seeking a recomendation for surgery vs. Mitotane only (Kaiser, by their own admission has not treated the disease before)• Your experience with initial consultation and evaluationDiagnosois has been over one month ago, and I am scheduled for a second opinion with UCLA (Dr. Glaspy) My medical records are with Dr. Glaspy’s office, and would like to have Dr. Yeh review.• Your experience with surgery• Your experience with recovery and how you have felt since surgery
Hello everybody im a 21 year old patient young with a child. I was diagnoced with a right adrenal carcinoma. It was really shocking hard to beleave. I was diagnoced with this problem 2months after i had my child she came out with a problem that Drs. could explain to me why till i was diagnoced with my adrenal tumor. My adrenal tumor was discovered by Dr. Shaw and Dr. Yeh. But when i went through all my examinations meaning CT scans MRI’s i was also told that it was invading my Vena Cava. But thanks to these Drs. and his team i feel great after surgery. I stopped taking my pain medication got out of the hospital 5 days after stopped taking my blood pressure medication now im just taking aspirin and prednasone. I feel great and satisfied of my treatment but have a long way to go but i dont worry as much anymore because other problems that i had are solved and im living my life day by day enjoying my daughter as much as i can with my 25 year old husband leaving my worries stress and shocking drama i went through behind. By the way my name is Dayana hope my blog would help you understand a little of this problem.
Dayana, my name is Anna and i was diagnosed with adrenal carcinoma invading Vena Cava this January. Stage #4…I had a tumor removed and felt ok but now 4 month later they found spots on liver and adrenal area. i am devastated! Did you have chimo theraphy? Can you contact me please 310-614-6462. thank you, Anna
Hello fellow patients. I thought I would start this blog with good news. My diagnosis, pheochromocytoma, was a shock of course. Before I found Dr. Heaney and Dr. Yeh, a tumor was found in my adrenal gland,incidentally,via MRI. I did a lot of research on the internet and knew what it was before going for my first appointment. Once I was there, Dr. Heaney sent me straight to Dr. Yeh who performed an adrenalectomy at UCLA Hospital. I have stopped taking blood pressure medication and feel great. If anyone is interested in the details, I am happy to share any and all information.
hi my name is linda, two years ago at kaiser a doctor took a blood test, and called and said he thought i had a pheo of the adrenal glands, it took forever to get to a enco doctor i kept being denied..when i finally got there after many beta blockers, time had passed anyway i had a mibg and the tracers were in the adreanal glands and on the liver..well i got very sick after with a bacteria that i did not now i had again thanks to kaiser not doing the correct tests, i got out of kaiser but was to ill, had a colonososcpy and i have erovise gastrinitis they did not know how i got it, well stress was mentioned i finally had a blood test for h pylori, that is where it came from..now another doctor found my thyroid is enlarged, and i know have after two years of suffering from illness i have found a doctor here in sacramento who went over the mibg and feels something on the thyroid he was not pleased on how kaiser treated me after seeing the mibg, so now i am going to do another serum blood test, a 24 hour urine test, and a ultra sound on the thyroid, if this is a pheo, it has spread to different places..this is the only place i have found that has a quilified team who does this because i understand it is rare like 1 in million can have this..not sure what is to come but if anyone can tell me some symtoms of what they go thru, me i have fast heart rates, weird temps, sick on the sofa, very weak i have lost weight, and anyway anything would help me..i am praying for the best about everything and i have to change insurance next week which not to happy about because if i do have this not sure how i will afford to get to this doctor and their team i really do not want to be a satistic..so any ideas on anything please let me know..also did anyone stomach ever hurt after eating from their adrenal problems..thank you so much…linda today is 11-25-11
I would love to know about the surgery I am about to be scheduled for the surgery because of a growth on my adrenal gland also. Right now I am debating on having it but I would like to get back to normal and its almost impossible because I never know when I am going to have an adrenal attack it just happens. I don’t drive like I use to but hopefully if you let me know more about the surgery I will be able to come to the right decision. I would also like to know about your health prior to you finding out if you are ok with that. Thanks Elaine
Did you have the surgery? I did. You will feel better afterwards.
I have been a nurse, instructor and lecturere for many years and very familiar with all aspects of diseases,medicine and surgeries and known many drs and surgeons. the diagnosis’s and surgery that were done by Endocrine surgery group of UCLA was very timely and amazing. I have suffered aldostronism and had high blood pressure for 15 years. I was taking 10 meds and BP was going up instead of going down. The reason was the adenoma in my left adrenal who was messing up all my hormones. The correct diagnosis and amazing easy scopic (rhobatic) adrenalecty has made me a different person. There was absoloutly no pain, discomfort, immobility or even minor problems post surgery. Everything went to normal levels the morning after surgery. I am greatful to Dr Yeh nd Dr. Levitches. I am sure they are the best in their field, best in the world. The whole surgical team were very efficient and amazing. I highly recommend this team and thois procedure for whoever they diagnose. Thank you so much team. I love UCLA