- Multiple endocrine neoplasia
- Inherited endocrine disorders
- Endocrine tumors of the pancreas, including insulinoma
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 
I was told that I had a 4 cm nodule on my thyroid in 2008. A needle biopsy was done and it was found to be benign. The thyroid was functioning normal. It was suggested that I have it checked again in two years, which I did. Another biopsy was done, which was also benign, and thyroid function normal. Nothing was ever said about having the nodule removed. In 2013 I was diagnosed with breast cancer, had surgery, went through chemo, etc., and they asked if I knew I had a growth on my thyroid. By this time, it was quite a bit bigger, now 9 cm. There was no outward sign of the nodule, which surprised me. Nobody said the nodule should be removed, I guess because we were concentrating on the breast cancer. Finally in 2015 I asked my oncologist about the thyroid nodule and if something should be done. He said I should see my primary care doctor and that the nodule should be removed. After seeing my primary care doctor, he said the nodule was 10 cm, and should definitely be removed. My thyroid function was normal through all this. I was referred to Dr. Yeh at UCLA. Our appointment with him was delayed because of an emergency surgery, but the staff was very helpful while we waited.
Dr. Yeh was very professional, yet friendly, informative and nice. An uldrasound was done there at UCLA and it was determined that the nodule was behind my sternum (why there was no bulge outside on neck). It was a pleasure seeing him. He was a bit surprised that the nodule had been allowed to get so big, now 10.5 cm. Surgery was scheduled, and I was informed of all the possibilities that could happen. I was told that a thoracic surgeon needed to be there, also, in case the nodule couldn’t be removed the normal way and they had to spread the rib cage to remove it (yikes!). Surgery was performed, the thoracic surgeon was not needed after all, and the incision was smaller than I thought it would be. Half my thyroid was removed with the growth. I was extremely satisfied with the care Dr. Yeh took to inform me about the surgery, the surgery itself, and the follow-up. It is now 3 months later and I have been told that my 1/2 thyroid is not functioning normal and that I need to be on medication. I was hoping the 1/2 thyroid would compensate and medication would not be needed, and I am still hoping that.
My experience with Dr. Yeh was a very positive one and his, and all others I was in contact with, professional manner helped alleviate the fears associated with surgery.
I was referred to Dr. Yeh regarding a parathyroid issue I was having with high level of calcium. Dr. Yeh is fun to be around along with his staff especially Jennifer, who made me feel very comfortable as I was nervous. At any rate, the surgery was a success, my calcium level was normal hours after the surgery. The scar is barely noticeable. Dr. Yeh and his crew are top notch. My only reservation was the doctor who did the anesthesia, he didn’t have any bedside manner at all.
Thank you again, Dr. Yeh. Danny and I are so thankful for you. Last night before we went out to the Beatles Love show at the Mirage, we both thanked God for you and the miracle of being free from the torment of that insulinoma! I still feel such a sense of awe and amazement that I feel normal again!
Sylvia
Hello. I am so glad to find this site. I have been searching for answers for three years. As I sit here now I have been dizzy for two days. I relate a lot to everyones story but nothing moved me to tears as much as sylvias. I too carry almonds, peanut butter crackers, glucose tabs, gatorade,etc in my purse. I am 45 and weigh 130 pounds. 65″. Thinking back it all started when I took the H1N1 shot in 2009 and then a couple of months later took an allergy shot ( I forgot the name). This may have something to do with it and may be not. Anyway I began to feel tired and sluggish. I though it might be menopause or my thyroids ( as I am getting older, I thought). I made an appt with an endo. She came back and stated I had diabetes type 1. Type 1! I gasped, shouldnt I be on insulin? She said not yet. I was puzzled. I guess the look on my face made her think about what she said. She said I wasnt suppose to have cells being type 1, so she put me on a continual glucose monitor. The monitor came back with high insulin levels for 7 days twice which confirmed my lows that I didnt know about then. My blood sugars were dropping below 70 and sometimes 50. OJ was my life saver. I was surviving on any type of cracker, protein, oatmeal, cheese, eggs, spaghetti. Anything to make me feel better. Eating every 2- 3 hours. I could feel when my body started to drop. This was difficult as I am a single parent and trying to work. Thank God my kids are 21, 18 and 14 and can fend a little for themselves. I called my endo from work one day and yelled ” I cant take this anymore1″. Well since then I have been eating protein, low carb and still dropping low. She referred me to a pancreatic speacialist here in dallas. I have had two CT scans and MRI, with and without contrast from head to toe. It always shows nothing. I cry each time, so I understand Sylvia. I have been researching on line and everything points toward an insulinoma but the CT scans and other tests werent showing anything. I have been dealing with this run around for 3 years. After this post I am going to call my insurance to see if I can get into UCLA. You guys have shown me thier is hope. Thank you so much.
Linnette, your post brought tears to my eyes–I hoped that someone like you seeking answers would find my post, and that it would give you hope. I hesitated to make it so long, but I thought the details could be important to someone searching for an answer. I am sorry for your misery and hope and pray that you will find an answer soon. I hope your insurance will approve UCLA, for the doctors at UCLA are beyond excellent! However, if that doesn’t happen, don’t lose hope–there must be other tertiary hospitals in our country who also have doctors capable of finding and treating insulinomas. By the way, I had an excellent endocrinologist Dr. Stephen Aronoff when I lived in Dallas. You have made me wonder about that H1N1 shot–I may have had that shot in 2008.
God bless you.
Sylvia
Hello Everyone. Couple of questions. I have contacted UCLA and awaiting a referral from my attending endocrinlogists. In the meantime wanted to know…. I have had 3 CT scans, 2 MRI;s, fasting test, upper GI scope, etc. My last results for all of these tests came back with nothing notated on the pancreas. If I am having all of these symptoms of an insulinoma why isnt it showing up? Also what test did some of you have in finding the insulinoma? Also the last CT noted a 3 mm low density on the liver. Is this something anyone else has encountered?
Also what did you guys eat for breakfast to help stabilize your blood sugars as much as possible until lunch and throughout the day? thank you
might want to ask to get an octreotide scan.
Linnette, I answered some of your questions in my original post, so I will only address the ones I did not already discuss. I still do not know why neither my Cat Scan, nor the MRI, nor the MRCP in Las Vegas showed my half inch insulinoma! Nothing was noted on my liver in these tests. Nothing stabilized my blood sugar until lunch–I got only approximately 1 and 1/2 hours until the next low. High fiber with high carbs worked the best: oatmeal (not instant, either Old-fashioned or Steel cut oats), whole grain bread from Costco, Ancient Grain Cereal from Costco (oats, quinoa, amaranth, etc. with 6 g. of fiber per serving). Spaghetti and white rice, though not high in fiber, gave me more time than high protein foods, apparently because of the high carbs. High protein foods gave me almost no time–I was low within 30 minutes of eating those. Fiber One bars were better snacks than most. Good luck to you!
Ok thank you sylvia. I misunderstood.
Linnette, how are you?!!!
Sylvia
It has been nine weeks since my wonderful surgeon Dr. Michael Yeh slew the monster within my body that had tortured me for eight long months, meaning that Dr. Yeh removed an approximately half inch insulinoma from my pancreas on April 12, 2012, which stopped my vicious low blood sugar attacks. I am very grateful to all of the doctors, nurses, and technicians who gave me such excellent care at UCLA. Truly for eight months, I felt as though I were battling a monster within—it was frightening that my endocrinologist in Las Vegas could not identify my illness, nor even suggest ways to fight the lows. My entire life was controlled by this insulinoma: beginning in August 2011, I had low blood sugar attacks in the 30’s, 40’s, 50’s, and 60’s every hour to an hour and a half, including nights, which was both physically and emotionally exhausting. My hope in writing my story is that someone trying to find answers for their severe hypoglycemia may find this blog and recognize their symptoms as possibly indicating an insulinoma because, as with me, their doctors may not. I googled insulinoma after I read that it was one of the causes of severe hypoglycemia, but did not research it in depth because I was assured by two endocrinologists that my two Glucose Tolerance Test results indicated I did not have a tumor as did a Cat Scan, an MRI, and a MRCP. Apparently those scans were inappropriate for diagnosing an insulinoma, and normal scores on various parts of the Glucose Tolerance test should not be used by doctors to rule out insulinomas! At UCLA I was gratified that my doctors listened to me intently and read my notes on my illness—I had kept a journal throughout the entire eight months and typed up the history of my hypoglycemia. Every doctor said that insulinomas are difficult to diagnose, but the UCLA team was able to diagnose my insulinoma in just a few days: I was placed in ICU for the 72 hour fasting test to confirm that my blood sugar would fall below 40. Normally this would have taken 1 ½ – 2 hours, but I had been on a glucose IV since entering the hospital (This made me feel normal for the first time in a year.), and it took approximately 30 hours to go under 40. After this test, which indicated an insulinoma, a CT angiogram of the abdomen and pelvis following a pancreatic protocol was performed and clearly revealed an approximately half inch insulinoma in the distal area, the tail of the pancreas. When Dr. Julliard, Dr. Yeh’s assistant, came to my room to inform us that the CT angiogram had revealed the tumor, I was overcome with emotion to finally have the diagnosis. She very kindly led us to the computer to view the little beast that I had fought for so many months—it was an amazing, beautiful sight! After the CT angiogram, I had one more test: Dr. Farrell performed an Upper Endoscopic Ultrasound and marked the tumor with dye to aid in the surgery, my first and hopefully last tattoo! My endocrinologists Dr. Kari Edlin, Dr. Nicole Tyer, and Dr. Jennifer Han were awesome! Indeed I was very impressed with all of the doctors who treated me at UCLA: They were very thorough, informative, and compassionate and were very willing to spend a lot of time explaining the tests, procedures, etc. I was very fortunate to have Dr. Michael Yeh as my surgeon, not only because he is a highly skilled surgeon, but also because he obviously cares about his patients; Dr. Yeh radiates confidence and compassion, and I trusted him immediately. He explained the procedure for removing the tumor using a picture he drew to illustrate the location of my tumor in the tail of the pancreas and of course the risks. I was very lucky to have my insulinoma in the tail because it was easier to access, required the removal of only approximately 5% of my pancreas, and did not necessitate removing the spleen. I did not require the epidural for pain. My surgery went perfectly, and I was amazed that the incision site was not very painful just a few days after surgery. I don’t mind the scars on my stomach—they are battle scars from defeating an insulinoma-monster! My glucose numbers returned to normal after surgery, a bit high initially, but totally normal now and most importantly no lows! My husband, our son, and daughter-in-law were at UCLA with me and gave me comfort and encouragement and acted as my advocates. The gas in my abdomen was uncomfortable for a few days after surgery, and I was appalled at the massive size. Following the nurses’ instructions to walk, I walked in the corridor with my husband or daughter-in-law, sometimes a nurse, two or three times a day to help my lungs and to get rid of the excess gas. I could not eat the first couple of days after surgery, and when I started eating, I could only eat very small amounts. I wasn’t concerned because I had 30 pounds to lose and I knew it would take time to get back to normal. I now have a good appetite, but am still eating small portions and have lost 13 pounds! I left the hospital on the fourth day after surgery and did not take any Oxycodone tablets; I took the 800 mg Ibuprofen tablets one day, did not like how they made me feel, and was fine with just taking regular Ibuprofen tablets for the next week. I had to keep the drain tube in for three weeks after surgery because it took that long for the fluid to go down to 10 CC; the site was beginning to look inflamed, so I was glad to return to UCLA on May 4 to have it removed. (I did see my family doctor to make sure the tube site was not infected.) On the day it was removed, by that evening I was not feeling well, and the next couple of days, I had a low grade fever, my cough was bad, and my throat was sore. I went to my family doctor, and he prescribed an antibiotic. After I finished the antibiotic, I felt fine again. The one problem that I have had since surgery is a reoccurring cough, and my family doctor has been treating that. Directly after the surgery, I had difficulty coughing up what I needed to cough up; I actually had oxygen in the hospital a bit longer than most people after surgery; I had to do breathing treatments and continued them after I went home. Steam treatments seemed to help. My family doctor decided I may be having an asthmatic-like response, so I am now trying Advair (an inhaler) for a month. Actually my cough is much improved, and I feel great. Although I am not up to my normal high energy level yet, I feel well enough to work out, short 30 minute sessions so far! I feel as if I have experienced a miracle, and Dr. Yeh is the miracle worker—I will be eternally grateful to him. Those of you who have experienced or are experiencing the devastating symptoms of severe hypoglycemia caused by an insulinoma will understand my use of the word miracle. It is not mere hyperbole! To feel—to be normal again—that is a miracle for an insulinoma patient!
I am a 61 year old retired German teacher from Texas who currently lives in Las Vegas, who wishes I were still living in Texas and teaching German!
The following part of this blog is a fairly detailed description of the history of my hypoglycemia, which may be of interest to someone wondering if he or she could have an insulinoma—I tried to be concise, unfortunately without much success!
I believe my insulinoma began developing or at least made its presence known in 2009 because that is when I noticed my weight beginning to creep up despite eating dietetically and exercising an hour to an hour and a half daily. I began having to snack between meals to maintain my energy level, which was normally high. Later in 2009 I could no longer go out for breakfast because I could not wait that long to eat and often awoke starving or slightly nauseated. I also awoke during the night often slightly nauseated and needed to eat crackers or cereal in order to go back to sleep. I found that a cup of milk worked best, which I later realized was due to the sugar in milk. In 2010 I continued regular snacks and had to give up jogging because I felt ill after jogging only five minutes, could not finish the course, and needed a snack before walking home; I had to carry snacks with me everywhere. My hour long workouts became 45 minute workouts and then later 30 minute ones. Through reading, I figured out that I had hypoglycemia. (I did see my family doctor, who ordered a fasting blood test in his office that showed nothing.) I was exhausted mornings, had frequent nightmares (or night terrors), woke every two hours, had difficulty going back to sleep, and some nights I was awake the entire night and had to cancel sub jobs for the following day; In 2011, my hypoglycemic symptoms worsened: I had to carry OJ and a snack (usually peanuts or yogurt) everywhere I went. Food alone was not effective. Initially two to three ounces of OJ and a half an ounce of peanuts sufficed to alleviate my weakness, dizziness, trembling, light headedness, etc.; I began to need the OJ and snacks multiple times per day, and workouts became very difficult to complete: I could only do 20 minutes on the treadmill when I was accustomed to 30-40. I often skipped workouts on working days because of exhaustion and needing a nap. By June 2011, my weight had increased to 150 pounds (from my ideal weight in 2008 of 135 pounds). After school was out, I was determined to lose the extra weight by eating even more vigilantly and working out an hour and a half spread throughout the day. I had to eat a snack before and after each workout session and gained two more pounds in June. My family doctor referred me to an endocrinologist, and she ordered a Glucose Tolerance Test, which indicated that I had Type Two Diabetes. I was shocked and extremely upset, for I had exercised my entire adult life, had a very healthy diet, and had maintained a healthy weight in the past—diabetes was the one disease I was determined to avoid! This endocrinologist had no idea why I was having low blood sugar; her advice was to treat my diabetes by having no more than 30 carbs per day—I would be dead if I had followed her advice. She also prescribed diabetes education classes and told me to test before breakfast and two hours after meals. I could not wait two hours because I was already low at an hour and a half after a meal! No doctor has confirmed a connection, but after the first Glucose Tolerance Test on August 17, 2011, my hypoglycemic symptoms became dramatically worse: the lows were more frequent and devastating, I felt awful most of the time, and I discovered the glucose readings were in the 40’s, 50’s, 60’s, and even 30’s if I did not treat soon enough. Indigestion and then nausea began at approximately 30 minutes to an hour after each meal, which I later figured out was due to my blood sugar falling rapidly. (Normally did not have indigestion.) I felt frightened and anxious when I realized I had to artificially keep my own blood sugar in the normal range by taking in sugar every hour to hour and a half to prevent myself from reaching dangerous lows. I also found that if I did not have a snack after treating the low, my blood sugar would fall again within 20-30 minutes. I soon found that protein with a low carb snack, the traditional hypoglycemic snack, was shockingly ineffective. To extend the time between these devastating lows, I had to eat a high fiber, high carb snack (I figured this out not only by trial and error; I had read the South Beach Diet book years ago, in which Dr. Agatston explained the role of fiber in regulating insulin.). My diet gradually became poorer: drinking large amounts of orange juice (30-40 oz. daily), eating large amounts of carbs and less protein every hour and a half resulting in weight gain each week. By April I weighed 166, more than I ever had in my entire life. My diet consisted of mainly oatmeal, Ancient Grain Cereal from Costco, and Spaghetti; I often had oatmeal three times a day. These foods worked the best in slowing the fall of the blood sugar and thus extending the time between lows. Still I never had good control of my lows: I was often surprised when I suddenly had strong low symptoms and tested very low. I did not believe I was diabetic, but I was worried that the large amount of sugar I was ingesting and the continuous weight gain could lead to diabetes. In September I was frequently low an hour after starting a meal. I quickly found out that the fewer the carbs, the faster I became low. I discovered that I became low 30-40 minutes after eating my favorite meal of grilled salmon, spinach, and a salad with red wine vinegar and olive oil. The blood sugar lows were completely monopolizing my life: I could not work or go shopping, go to church or anywhere, and I could not even concentrate enough to read, which is my favorite hobby; I could no longer make myself cook; I could not exercise or dance, my other favorite hobby, and even cleaning house and going up and down the stairs a few times caused me to become low. Essentially, my life was eating poorly, keeping a journal, and treating lows. I saw my family doctor and requested a referral to another endocrinologist; my very supportive family doctor looked at my Glucose Tolerance Test results, said they were contradictory, and that he did not believe I was diabetic, which lifted my spirits a bit. I was not diabetic: the insulinoma was causing the readings that normally confirm diabetes.
On September 7, 2011, I went to the second endocrinologist, a nice man who initially inspired confidence. I was so ill that my husband thought I was dying. I took a packed bag with me in the car because I thought the new endocrinologist would put me in the hospital, but he did not. I had prepared a page of my concerns entitled “Feeling Desperate” and a page of my hypoglycemic symptoms that included every symptom that I had read about plus one that I had not read about: urgent need to urinate when I suddenly realized I was low! The new endocrinologist looked at the results of the Glucose Tolerance test and my list of low glucose meter readings, said that either my glucose readings were incorrect, or my Glucose Tolerance Test results were faulty because they were contradictory. I doubted that the lab test was faulty, and I was sure that the meter was accurate because of my pronounced hypoglycemic symptoms. My doctor ordered another Glucose Tolerance Test, and I got a new glucose meter from his office. I had the second Glucose Tolerance Test on September 14, 2011, and the results were very similar to the first test; the second glucose meter showed lows just like the first meter. The new endocrinologist also believed I was diabetic based on the Glucose Tolerance Test, but could not explain the fact that I was having only low blood sugar readings, no high ones. The number of drops in blood sugar continued to increase throughout September and October with low readings in the 40’s, 50’s, 60’s, and even occasionally in the 30’s, usually 8-10 times per day making it difficult to go to sleep at night; I figured out that headaches that had plagued me throughout 2010 and 2011 were actually signaling that my glucose was dropping or was already low. My blood pressure increased during the rapid drops, and while low, I felt like I could be dying: it was as if some entity were sucking all the blood out of my body—it was a very strange feeling, difficult to describe. Indigestion and nausea continued with each rapid blood sugar drop until the end of September. My frequent drops required me to check my blood sugar 10-22 times per day, causing my fingers to be sore though I alternated fingers and hands. I found that if I ate a meal without confirming normal blood sugar, sometimes my blood sugar would drop during the meal, and then it would take much longer to bring the blood sugar into the normal range, which was frightening. During my second appointment with my new endocrinologist on September 20, he asked me how many carbs I was taking in per meal; I did not know the answer, but I did know it was not too many. Even though I had described my healthy diet (no fast foods, no cold drinks, occasional dessert, seldom potatoes, no corn, no white rice, seldom pasta, no fruit juice, no candy except for occasional chocolate, fried foods almost never, frequent salads with olive oil and red wine vinegar (no bottled dressings); no sugar in iced tea; whole grain bread only (not the brown colored soft bread available in grocery stores), whole grain cereals, Old Fashioned Quaker oatmeal daily for breakfast, Greek non-fat yogurt and yogurt with fruit in it, red meat once or twice a week (no more than 2 inches in diameter, often less), fish 2-3 times a week, chicken 1-2 times a week, some meatless meals, peanuts, almonds, or peanut butter, fruit and vegetables daily, legumes daily, 1% milk, normally no snacks after dinner unless early dinner; olive oil used in sautéing and canola oil in frying chicken tenders for husband a few times a year. (My normal portion: 1 ½ chicken tenders) ; 2-3 eggs per week (boiled egg snack or scrambled); Smart Balance normally, butter occasionally), he insisted that I see a dietitian to determine whether I was taking in too many carbs per meal! I considered seeing a dietitian a waste of time and useless in diagnosing my illness, but I was too ill to protest. My ability to think was definitely compromised by the continuous lows; however, I knew my hypoglycemia was not due to my diet. The dietitian confirmed that I was eating healthily and not taking in too many carbs. During my next appointment on October 11, my doctor ordered that I get a DEXA and wear it for at least a week or two; a DEXA is a device that reads your blood sugar continuously after a needle is inserted into your skin. He wanted to determine whether I was also getting low at night and the severity of the lows and highs; I knew that I did get low at night because I woke every two hours (sometimes after 1 ½ hours), tested low, could tell that I was low even when I did not test, and had to drink juice and eat a snack in order to go back to sleep. At first I worried that I would go into a coma while asleep, but it seemed that my body was waking me regularly to keep that from happening. Still I was aware that this could change. Wearing the DEXA made me even more anxious—I was already extremely upset and anxious because my new doctor also did not have any answers. On October 13, 2011, I saw my compassionate family doctor, explained my growing frustration and fear, how ill I felt, and he prescribed Xanax for my anxiety. (I have not taken this since my surgery.) On October 19, 2011, I met with my dietitian for the DEXA to be removed and then with my endocrinologist, who after reading the results, confirmed my lows during the night. He then ordered a blood test to check for an insulinoma on October 26: after fasting, I had to go to Quest Lab, have blood taken, wait until my blood sugar fell below 50, and have blood taken again. Quest Lab was not pleased to have me there: they explained that they were not set up to deal with emergency situations that could occur due to low blood sugar. I was worried that I could not fast because my blood sugar level was often in the 60’s mornings; my blood sugar was 65 at 4:57 AM, 76 at 5:48 AM, and 89 at 7:00 AM when the first blood sample was taken. Almost three hours later at 9:50 AM, my glucose meter showed a reading of 49, and I was feeling quite bad. When I saw my endocrinologist on November 2, he stated that the results did not indicate a tumor, but he seemed irritated and disappointed that when I tested, my blood sugar was actually 51, not 49. I never thought about the possible discrepancy between meters; had my doctor told me to wait until 45 or 46, etc. I would have done so. (My UCLA doctors stated that this test was not valid because the glucose needed to fall below 40, not 50, in order to confirm a tumor, and that it never should have been performed at a Quest Lab because of the danger associated with such low blood glucose.) On November 4, I underwent a CT of the abdomen (using a 256-slice CT scanner) ordered by my endocrinologist, and the results were normal; I cried each time I got a normal report because it meant a continuation of my misery. I knew instinctively there was something in my body plunging my blood sugar regularly, and I could not understand why it did not show in the CT scan. At my November 9, 2011 appointment with my endocrinologist to discuss the test results, he had no solution for my illness, nor could he give me a reason for my severe hypoglycemia, yet he told me to come back in four months! I left his office in tears because I felt desperate and extremely ill with no idea what to do about it. Indeed, except for the first visit, I left his office in tears each time I was there: after sitting in his office an hour and a half to two and a half hours, I was low each time, had to treat with OJ or glucose tablets and a snack directly after each appointment, and of course, becoming emotional is one of the symptoms of low blood sugar. During the whole eight months of continuous lows, I was not thinking normally—I was a poor advocate for myself, and that explains why I did not immediately object to his statement that I was to come back in four months. I felt shocked—I could not respond to such an absurd statement—it was as if I were drowning in some sort of quick sand, and my doctor, whom I had trusted, was doing nothing to save me. I had explained how ill I was, the fact that the lows were regular, the fact that I was keeping my blood sugar up by drinking massive amounts of OJ (later used glucose pills alternately) and eating every hour to an hour and half, and that my weight was steadily climbing, but it was as if he did not hear me!
On November 11, 2011, I saw my family doctor, and he recommended that I go to the Mayo Clinic. I learned that the UCLA Medical Center was on my insurance and that it was excellent, so I went back to my endocrinologist on December 6, 2011 and requested a referral to UCLA. I believe he initiated the referral the following week. During this appointment, I asked my doctor whether he had ever had a patient with exactly my symptoms and had he been successful in treating the condition, and to my amazement, he said yes, and that the patient had an insulinoma, it was removed, and the patient was fine! From that moment, I knew I had an insulinoma, and I regretted that I had not asked that question on my first visit on September 7, 2011! Unfortunately, it took my insurance four more months to get me to UCLA. My insurance insisted I have more testing in Las Vegas before going, so I had a MRCP and a MRI of the abdomen with and without contrast on February 10, 2012. By this time, I could no longer fast, which was required for these tests. I went to Steinberg Diagnostics to get the results, and upon hearing another negative report, I broke down and cried once again. The lady giving me the results was amazed that I was in tears because my report did not show a tumor. When I explained my reasons for wanting a positive report for an insulinoma, this compassionate lady came around her desk, put her arms around me to comfort me and prayed with me. This kind action helped immensely to chase away my despair: it reminded me once again to trust in God and accept His comfort, which had been sustaining me throughout the last torturous months; my husband had also been supportive and loving throughout these months of misery. Occasionally, I had to treat multiple times (sometimes 2, 3, 4, 5, and 6 times) before my blood sugar returned to normal—very scary! During March, something strange happened: the time between the lows increased , and I occasionally had close to two hours before my blood sugar fell under 80, and sometimes at 1 ½ hours after eating, I was still in the 70’s or 60’s; it did continue to fall into the 40’s and 50’s, usually in the next 15 minutes. I was delighted to be able to decrease the number of my glucose testing times to 10-12 times on several days in March. I had been sure since December that I had an insulinoma, and now I almost felt as if the monster/insulinoma were giving me a slight reprieve after battling it for so many months.
During this entire ordeal, despite my anxiety and despair at times, I never gave up hope. Naturally optimistic by nature and trusting in God to lead me, I knew there had to be an answer. I thank God for the UCLA Medical Center, its wonderful doctors and nurses, and especially for Dr. Yeh.
My name is Brenda on October last year, my doctor announce me, that they found cancer again on the same place that 5 years ago they took my thyroids‘.. .. After month of feeling like riding a rollercoaster with the first surgeon who was suppose to do my surgery who was a complete disaster . My doctor referral me to a second opinion with Dr Harari… the first time that I went to UCLA and I have a meeting with her and her team I Feel complete secure , care ….. She explained to me the real situation, proceeds and what to expect.. had a very positive experience with the UCLA team headed by Dr Harari. They take very good care , the surgery went really good on the same day they release me, is been a month since that date I did not feel any pain ..I will be eternally grateful to Dr. Harari and her team
I want to thank Dr. Yeh and all of his staff at UCLA Medical Center. I was referred to him by an endocrinologist at the medical office we have been using for 24 years. Dr. Yeh confirmed her suspicion that I had an insulinoma. After two CT scans and an Endoscopy Dr. Yeh felt he had enough information to go after the tumor. It was located in the head of my pancreas. As soon as the tumor was removed my blood sugar levels began to rise and have been at normal levels ever since. I was hospitalized for 7 days. The care I received was amazing. I was treated with nothing but respect, concern, and efficient management of my case. My surgery team, my pain team, and the endocrine team checked on me at least once a day. The nurses, lvn’s and other hospital staff were wonderful. The epidural allowed me to manage my pain and by the time it was taken out my pain level was at a minimum. I was blessed to have a daughter who stayed with me in the hospital and two other daughters who helped me after I returned to my home.
My story is much like the other stories I have read on this blog. It began with cold sweats, shakiness, and disorientation. Things got worse and I actually passed out twice. Twice while driving I became disoriented and became lost. Fortunately I was with my husband the first time it happened. We were on the 405 during heavy traffic and he was able to help me get across all the lanes of traffic from the carpool lane to an exit. The second time I was alone but when I failed to arrive where I was supposed to meet my family my husband called on my cell phone. Fortunately there was no traffic on this road and I was able to turn around and retrace my steps. When I reached my husband he took over the wheel and parked the car.
I am six weeks past the surgery now and I feel great. The drain was able to be removed before I left the hospital. The incision is still sensitive but I feel stronger and more “normal” every day. I can’t say enough good things or offer sufficient thanks to Dr. Yeh for his concern for my welfare, his excellent care, and his optimistic view of my future.
I am interested to know how long you had your symptoms before your endocrinologist referred you to UCLA and whether your blood sugar fell every so many hours regularly as mine did. I had some disorientation in the 30’s and 40’s, but never had the extreme lows occur while driving–that must have been terribly frightening. I also never passed out–do not understand why. Thanks.
Sylvia
Hi. i know this post is two years old and would be really surprised to get a reply, but I have an insulinoma, i just learned this year, though i think it’s been there since 2006 judging from blood test copies i have going back to the late 80s, glucose perfectly normal until 2006, and below the normal range ever since, including a 33 in 2010. Still, i didn’t have prominent classical symptoms of hypoglycemia except mild ones once in a while, so i didn’t know my glucose was low, i never noticed it on the blood tests. I do know that in 2006, i became very very tired and having trouble at my job, but i didn’t feel sick at all, just really tired. The last blood test i got was in 2010.
This year, i had a weird episode upon awakening, walking to the bathroom, i fell, so i got up and then i fell again and realized my coordination was impaired. I couldn’t type. it didn’t go away for about an hour, finally with much difficulty i heated some water and poured it on instant oatmeal flakes, unsweetened, started eating it and quickly, i felt my coordination come back. i wondered if i had hypoglycemia, but then i didn’t think of it again because it had only happened that one time.
i was always groggy in the mornings, i thought it was from my sleeping pills. I did decide to get routine bloodwork It came back with glucose at 32 and my doctor was very alarmed, but because i said i felt normal, he thought it was a lab error. Then i had a second episode of ataxia, or extreme incoordination, i could not walk at all and i couldn’t enunciate words, it was about 5 days after the blood test. i drug myself to the kitchen and got a piece of whole grain rye bread and took a bite. Before i had finished eating that bite, i felt my coordination come back and i knew i could get up and walk, and i was fine, made breakfast, etc.
That was around March 1 and then i realized that for sure i have some weird kind of hypoglycemia. I couldn’t find any other people on the hypoglycemia forum who had symptoms like mine, but i started eating 5 times a day instead of 3 because of what i read there. I also got a home glucose tester and started doing that every day. My morning glucose was very low, 20s and 30s. It didn’t go up very much during the day, but over a week or two, it got a little better, morning test in the 40s, i thought that as great.
Still, i didn’t have clear HG symptoms. Like, i would get up in the morning and i go for a half hour walk, then i’d do some yoga, then maybe some tidying up the house, and then around noon, i’d have breakfast, about a 16 hour fast, no symptoms other than the grogginess that i’ve been having for so long, it’s normal for me. I still don’t know if it’s caused by my sleeping meds, which i take at bedtime and again around 4am. They are short acting (Ambien).
So it was confusing. I saw an endocrinologist but he said my symptoms and blood results “didn’t add up” and he said it wasn’t an endocrine problem, it was probably my liver and i should see a liver doctor. He did some blood tests, non fasting, but not including insulin. A1c was below the normal range. Glucose was slightly below the normal range, 62. He wrote on the lab report they faxed me, “sugar is great!” Really?? I had been eating all day. i think he had no concept of an insulinoma.
I did go to a gastroenterologist as the endo had recommended. The day before i saw him, i had two more episodes of extreme symptoms—two days before i saw him, i woke up laying on the floor next to my bed, no idea how i got there, unable to get up, unable to enunciate my dog’s one syllable name. i live alone. So, that happened two days in a row, and then i saw the doctor. He said he saw no reason to think the liver had anything to do with it and he said “I think it’s odd that no one has checked your insulin to rule out insulinoma, so he ordered tests for that. i did it non fasting, my glucose was about 52, despite eating about an hour and a half before, my third meal of the day, insulin was 58, the doctor said i had insulinoma and referred me for an EUS to a Dr Bedford in Santa Monica (i’m in the Valley) who he said was his teacher at UCLA. He also referred me to another endocrinologist. that endo did a fasting hypoglycemia panel, outpatient, and it showed glucose 44 and normal range results for insulin and C peptide and elevated pro-insulin. He said all these results were “completely abnormal” and that they suggested insulinoma. He referred me for an MRI which didn’t show anything. He referred me to a neuroendocrinologist at UCLA, Anthony Heaney.
Meanwhile, i had been scouring the web to learn about insulinoma treatment. I didn’t find much info on the UCLA website and i didn’t find anything on the Cedars website, but i found lots and lots of info on the USC website, there was a detailed webpage just about insulinoma with links to other pages with related info on treatment and diagnosis. So this attracted me more than UCLA or Cedars. They had a surgeon who was director of the Pancreatic surgery department and in charge of other stuff, his name is Dilip Parekh. His webpage said his main interest is in “novel treatments” of benign and malignant pancreatic tumors and other things that appealed to me, pancreatic tissue preserving techniques, laparoscopy for almost everything including whipple and distal pancreatectomy, enucleation of most insulinomas, including on the head of the pancreas, things like this drew me to USC.
I have met Dr Parekh, the surgeon. I had a CT there which did not find the insulinoma. Then i had an EUS with Dr Van Dam and the tumor was found, i have pictures of it, it’s round, it’s well encapsulated and it’s on the head. So, good news and less good news, i guess. Tomorrow, i have my follow up appointment with Dr Parehk, and maybe he will tell me his opinion of what can be done, best case scenario, plus other possibilities. Hoping for laparoscopic surgery, hoping for enucleation, no idea where the insulinoma is positioned relative to the pancreatic duct and blood vessels. I expect that might decide whether it can be enucleated or not. Fingers crossed. I wonder if he will want me to get an MRCP to get more info about the location of the tumor, but either way, i believe the surgery will be soon and hope to schedule it, though i might have to wait if there’s more imaging.
I replied to your post because it sounds like things went really great for you at UCLA, with Dr Yeh, and i am guessing you had it removed laparoscopically judging from the short time you were in the hospital. I was wondering what the location of your insulinoma was, and i am wondering how to find out more info about what kind of advanced techniques are used at UCLA, since i couldn’t find any info on their website and was not able to find anyone on the phone who had any idea. After a lot of persistence i spoke to an RN, but she had never heard of insulinoma, it seemed. Because i wasn’t already a UCLA patient and hadn’t been examined there, no one could tell me anything, even though i just wanted general info about pancreatic surgical techniques used there.
In case i want to get a second opinion, i am wanting to ask you these questions. I haven’t read Sylvia’s posts yet. i just landed on this page while googling and was skimming through the posts. Very happy for you that you had a fairly uncomplicated removal of your insulinoma.
Dear friends in need….it seems we all have our own issues that cause major havoc in our lives. I am glad there is a venue for s to share. I have been fully diagnosed with Von hippel Lindau disease. I have had a left craniotomy, spinalectomy and right adrenalectomy. Additionally, I have lost my vision in my right eye and have had several lesions in my left eye. My youngest son had a bilateral adrenalectomy due to pheochromocytoma five years ago and now my oldest son has shown signs of a pheo in his right adrenal gland. My question and concern is regarding lesion in the liver. My youngest son is showing two minor lesions in his liver with no symptoms. Any thoughts?
OverviewMy 33 year old son was diagnosed with MEN-2a, after surgical removal of a cancerous tumor on his thyroid gland. After tests were completed, we discovered that I carried the Men-2a gene.Another surgery was performed on my son to remove his entire thyroid gland and surrounding tissue. This was done by a well-renowned doctor in this field in the San Francisco area.My son is doing well, takes thyroid meds, and has regular blood tests especially for his calcitonin levels. Since I live in the Los Angeles area, my son's doctor recommended me to see Dr. Michael Yeh(a former student) at UCLA. I brought several tests results and had a few more at UCLA. It was suggested that I have a prophalactic Thyroidectomy. Luckily, I followed the doctor's advice. My entire thyroid was removed and a biopsy showed evidence of MEN-2a. I was then 67 years old,a mom, and never had any symptoms of the disease. I am grateful for the knowledge and expertise of both doctors. I take thyroid pills on a daily basis now. My calcitonin levels are checked periodically.My care and operation was a success. I had a small incision which hardly shows. My other physicians became schooled in MEN-2a as they had little knowledge of it. This genetic mutation is passed on to 50% of the offsprings. When my son has children, they will be tested for the gene. If they carry it, they will have a thyroidectomy at about five years old to prevent the cancer. This condition cannot be treated by radiation or chemotherapy. Surgery is the treatment.
hi your post is really nice, we can share different point of views together,thanks.
It's been 2 years since I underwent surgery for a pheocromocytoma located in my left atrium. This type of tumor is pretty much always located in the adrenal gland, so I went through several months without diagnosis. My blood pressure reached extreme levels, 230/130. This lasted for about 8 months before I was treated appropriately. At the time doctors discovered my blood pressure elevated I was 6 months pregnant. I was immediately was admitted to the hospital and tested for Preclampsia 9 times. Finally doctors discovered I had a pheocromocytoma. I had an MRI of my abdomen without dye (because of my pregnancy). Doctors thought they saw the tumor where it is 99% of the time found, in the adrenal gland. They scheduled a C-section and 2 months later, an adrenalectomy. Turns out 2 days after surgery, they came into my hospital room and told me no tissue tested positive for the tumor.This is when I was sent to UCLA and met DR. Yeh. He gave me an MRI of my entire body to locate where the mass was. I went in for results and he showed me an image of this tumor between my lungs, and under my heart. I was so shocked, my heart literally sank. The scans weren't clear what the tumor was actually attached to. It wasn't until the doctors were in surgery where they found the tumor attached to my heart. They then did a cardio-pulmonary bypass and resected a piece of my heart tissue and replaced it with cow tissue. I woke up to find out the intensity of what happened. My family was so happy to see me alive! They went through so much the night of my surgery. I have been wanting to post this for a while. Today I received the journal my story was told in. I guess that's why I'm doing it now. But, I am also doing it because I was diagnosed with a rare genetic disorder that can cause more tumors called Pheocromocytoma/paraganglioma Familial Syndrome. I get scared and nervous sometimes. I am hoping to make contacts with people who live with an illness that threatens their health and or life. I feel that no one really understands what it is to have fear for my health that is real. It could happen again. I almost lost my life, and my son. I want to live a long life.Thanks for reading my story.
I had a very positive experience with the UCLA team headed by Dr. Yeh. I came in for surgery for the removal of my adrenal gland due to Cushing's syndrome. The office was very accommodating in getting me in immediately. the surgery was successful and the post operative care was excellent. I felt very comfortable from the first meeting with Dr. Yeh and knew I was in good hands.It has now been four months since my surgery and although I am still on medication for a while longer I feel like a new person. I have lost 17 pounds, my moon face has disappeared and my high blood pressure is GONE! I will be eternally grateful to Dr. Yeh and his wonderful team.
The clarity and balance that shines from this article. The information is centrifuged, and an excellent peace of quality work emerges. The cancer is curable now days, if proper treatment by the expert physician is followed. It is very necessary that the website contain latest research occurring in field of oncology. This will help larger number of people who are suffering from cancer tremendously. Once again I will say that article is presented in very coherent way and presentation is of par excellence.
My name is Graciela, I am 46 years old. I live in Palm Desert, California with my son Jason 6 years old and my husband Enrique.Our journey began in February of 2008; I underwent a total abdominal hysterectomy and bilateral salpingo-oophorectomy due to severe endometriosis. During my operation I was noted to have abdominal wall and omental nodules. A biopsy was performed and was positive for low grade neuroendocrine tumor. Incidental finding.MRI'S of the abdomen showed a large mass in the greater curvature of my stomach measuring 6.6 x 4.9 centimeters, another mass between the stomach and the spleen measuring 2.7 X 2.5 centimeters, another mass measuring 2.4 x 4.2 centimeters and multiple liver lesions, the largest measuring 2.2 centimeters. A whole body PET scan was also done which confirmed the diagnosis of metastatic carcinoid tumor.My local oncologist indicated that she did not know how to treat my disease and recommended that I see Dr. Steve Wong, Oncologist at UCLA. She also indicated that my stomach mass would rupture, I would hemorrhage then of course die.Needless to say I was beside myself. I had already decided there was no hope for me. I spoke to my husband about cremation…. Three days later I was given an appointment with Dr. Steven Wong at UCLA. God bless the day I met Dr. Wong. Dr. Wong gave us hope. He indicated that my tumors were operable. He reassured my husband and me that I would fine. He knew the perfect surgeon who could help me. So he referred me to Dr. Michael Yeh Endocrine Surgeon. The moment I met Dr. Yeh, I felt such peace and reassurance that he would help me and my family. One year ago today, June 19, 2008. I underwent a subtotal gastrectomy, splenectomy, resection of peritoneal and pelvic nodules with multiple liver wedge resections and radiofrequency ablation. My surgery was approximately 5 hours and 55 minutes. On December 4, 2008, I underwent radiofrequency ablation of the liver by Dr. David Lee, Radiologist at UCLA. On January 12, 2009, I underwent surgery for resection of abdominal wall mass by Dr. Michael Yeh. My pathology of all these nodules was positive for well differentiated endocrine neoplasm (carcinoid tumor).I know that I face many more stages with my Carcinoid disease, but please have faith in your doctors.I would like to thank Dr. Michael Yeh and the UCLA Endocrine Surgery Team and all my UCLA doctors. You have helped prolong my life. I am eternally grateful. Thank you also for always treating me with respect and making me feel like royalty.
My name is Christine, I live in Temecula, and I had surgery for an Insulinoma 8 weeks ago at UCLA. The surgery was a success and Dr. Yeh and his team did an excellent job for me. The best advice I can offer someone who is in need of surgery for an insulinoma is to be sure to use an Endocrine Surgeon and to seriously consider UCLA. And here is why… My story begins about two and a half years ago when I drove home, but I could not recall the route I used to get home. I was tired and went to bed in the early evening and did not wake up till late the next day. I didn’t give it any serious concern since it was an isolated episode. About 14 months later I had another episode just like the one before, but again it was only for one day and I did not consider it serious. I thought that maybe I just went too long without eating. In November 2007, I had the same episode, but this time I had similar symptoms for the next 4 days. I did not feel confused 24 hours a day for 5 days staight, but there was something that wasn’t right each day for 5 days in a row. I had a scheduled appt. with my primary care doctor on December 11, 2007 and would discuss it with her then.12/11/07 I discussed my symptoms with my primary care doctor and she was sure I was hypogycemic. She ordered a 2 hour glucose tolerance test and instructed me to eat every 4 hours with protein at each meal. She called me a few days later with my test result and confirmed that I was hypoglycemic since my blood sugar level on a fast was 46. She instructed me to continue with eating every 4 hours with protein at every meal.01/07/08 I went to see my primary care doctor, because I did not feel like I was getting any better. I actually felt worse. She instructed me to continue what I was doing and it would take time for my body to return to normal.04/28/08 I did not feel quite right on this morning. I drove my children to school, but was sweating behind my knees and on my forehead. I stopped for breakfast (egg and cheese burrito, some fries, and a small coke). After 15minutes, this did not make me feel any better and did not feel like I could make the commute to work. I called my primary care doctor and drove straight over from the restaurant. My blood sugar level was 39 after a breakfast that included a coke. She thought her equipment was not working properly, but instructed the nurse to get me another soda. I drake it and we rechecked my blood sugar level. It was now 52. I grabbed her arm and looked into her eyes and said “I am like this everyday, something is wrong”. She stated that I might have a tumor on my pancreas and gave me a referral to an Endocrinologist, a Wellness Doctor, to have CT scan, an order for a glutometer, and to the lab for a stat glucose test. It took a hour to get through the lab and I was sent home to rest. My doctor called me later with the blood sugar level of 65 at the lab.05/02/08 THIS IS THE DAY THAT EVERYTHING CHANGED. I had just seen the doctor on Monday and today is Friday. I go into work, graze all day, and head home around 4:00. Half way through my commute home, I began to drive eradically and the cars behind me pulled way back. They were already on the phone with 911 when several miles later I hit the center divider causing a flat tire which forced me to stop. The cars behind me pulled over with me and stayed on the phone with 911 till the CHP arrived. When the CHP officer arrived, he ran to me and asked me to breathe into his face. Since he did not smell alcohol, he ran back to his vehicle and brought me a tube of glucose. He squirted it into my mouth and was yelling at me to swallow it. I had never heard of glucose in a tube so I was reluctant to eat it, but I was sort of forced to. Fire trucks arrived and three paramedics were poking me with needles on each of my arms. I was concious, but not real with it. I asked them what they were doing, since I was still in the drivers seat of my car. They said my blood sugar level was 31 and they needed to start an IV to get Dextrose in me right away. I cooperated and I was taken by ambulance to my local hospital that was about 3 miles away. At the Emergency Room the paramedics got my blood sugar level to 91 and the Emergency Room staff was able to keep it regulated at 91 while I was there. I told all of the above information to the ER doctor. He said he would do the CT scan there for me so I would not have to wait for the referral to be approved. The CT was negitive and the ER doctor sent me home with an order to see my Primary Care Doctor the next morning for a blood sugar level test.05/03/08 I ate some cereal and headed for the blood sugar level test. It was 65. I went straight to the drug store a purchased a glutometer so I could monitor my own blood sugar level to see what was going on. I tested 4 times a day everyday and kept a food diary while waiting for the referrals to be approved. The referrals took a long time to process and turn into appts. I also began to carry a bag with me when I was out that contained my glutometer, a bowl of Corn Pops cereal, 2 cans of Pepsi, and a straw. Also at this time, we all decided that I would no longer commute to work due to the distance where I am a Vice President of Operations for a Real Estate Corporation. 05/20/08 I saw a wellness doctor who is a Phd. in Health, not an M.D. He looked over my food diary and blood sugar level chart. I told him that I did not feel any different whether my blood sugar level was 104 or 44. I had to test regularly. He was sure it was my adrenal glands since my body wasn’t giving me the signal that my blood sugar was low. He recommended some books to me on adrenal fatigue.5/27/08 My first meeting with the Endocrinologist. She did a panel blood test for an insulinoma. The test results took 3 weeks to get back. She was sure it was an insulinoma and referred me for a endoscopic ultrasound at Loma Linda University. She warned me that insulinomas are hard to find and they might not find it and I would then need exploritory surgery.07/17/08 Endoscopic Ultrasound I had to fast for this procedure and once I arrived at Loma Linda I checked my blood sugar level and it was 34. I was administered Dextrose and they got my blood sugar level up to 148, but 30 minutes later it was back to 38. They woke me up during the procedure with lots of stuff down my throat, but they worked quickly to get my blood sugar level back up and knocked me back out again. They did find a lesion on the head of my pancreas of 1 cm., but the biopsy result did not conclude it was an insulinoma.(Now I knew it was an insulioma and I did a lot of research on the internet. I knew what buzz words I should hear from the surgeon. I was glad I did my homework).08/11/08 Appt. with Pancreatic Surgeon at UC Irvine. The surgeon needed to have a positive result of an insulinoma, because this would require a Whipple procedure. He wanted to do another endoscopic ultrasound, but I asked if we could use the original sample from Loma Linda. He said we would try. So I had Loma Linda send 5 recut slides to UC Irvine.09/03/08 UC Irvine concludes that it is an insulinoma and I would need a Whipple procedure. I questioned why I needed to have surgery on 5 organs when I had a 1 cm lesion on the head of my pancreas. I wanted to know why he couldn’t just enucleate the lesion, and that really pissed-off the surgeon. I contacted my Primary Care Doctor and requested a second opinion with Dr. Yeh at UCLA. With some muscle we were able to get it approved.09/30/08 Appt. with Dr. Yeh at UCLA After some discussion Dr. Yeh was hopeful that he could enucleate the lesion, but he wanted a MRI performed at UCLA. The insurance did not approve it, I did have an MRI at my local imagery center, but the results were not able to give Dr. Yeh any additional information about the location of the lesion. So we went into surgery blind, but hopeful that he could enucleate the lesion. If he needed to do more then he would. I TRUSTED DR. YEH to handle my surgey and we did the surgery on 11/17/08. The surgery was successful with enucleation and my blood sugar levels and insulin levels returned to normal. I had an epidural for 4 days after the surgery and once they turned off the epidural, I felt absolutely no pain from the surgery. I didn’t even take the Vicadin once I was home. I took Motrin for muscle aches, but no Vicadin. Four weeks after the surgery I did get an infection deep in my incision, but that is healing and we are confident that the oral antibiotics took care of the infection. I will have a ultrasound done in a few weeks to be sure the infection is completely gone. Everyday I get a little stronger and I can do a little more for a little longer amount of time. I have still not returned back to work, I probably could if I absolutely had to, but after all of this, I do not intend to rush it. I want to take my time to heal and take care of myself right now.END
Christine, I just posted my story, and I am amazed that my insulinoma experience was so different from the other experiences posted on this web site. You stated that you tested your blood sugar four times a day–that surprised me because I had to test 10-22 times per day due to the continuous lows! Were you low only four times a day? Are you still doing well? Hope so!
Sylvia
My name is Michelle and I live in Calimesa. My insurance is with Loma Linda. And reading your experiences just convinced me more than I can not trust Loma Linda to take care of me. I’ve had terrible symptoms this past 2-3 years and here in the last 6 months or so, they have been absolutely unbearable. I’ve got to 2 different doctors so far and no one will believe I have an insulinoma. I have done all the research. I’m sure I have it. Just like I was sure about my Endometriosis. I knew it was the only answer to what I had and I was even able to pinpoint the location of where they would find it. (my gyno, Danielle Mason, is an absolutely amazing doctor and she took good care of me) I just wish I could find a doctor like that in the endocrine dept to give me a referral to go to the hospital and get the 72-HR supervised fasting test done. None wants to send me the referral. Blood sugars went from 80 when I went in, down to 50. If it was 49, they said they would have considered it. I’m at my wits end trying to show these doctors that I know my body better than anyone and I’ve done enough research to know. I’m feeling like paying a visit to UCLA myself and getting things started there even if insurance won’t cover it. I can’t live like this anymore.
Paratracheal Amyloid Mass:First the background: I have a very rare disease that probably nobody reading this has ever heard of, called amyloidosis. Mine is localized in the form of masses or tumors in my upper chest and neck area. The disease was discovered two and a half years ago following a biopsy surgery performed by thoracic surgeon, Dr. Robert Cameron of UCLA after a CT scan turned up a huge mass in my upper chest/lung area. The mass was not operable due to its position, size, and number of arteries/veins going through it. Radiation therapy was ultimately recommended by a specialist I see at Boston University every year, and I returned to UCLA for the radiation.The radiation appears to have stopped the growth in my chest from progressing any further, thankfully, but two years later, in June ’08 an aggressive tumor was discovered in my neck. When I went to see Dr. CAmeron, the thoracic surgeon again, he told me that the neck is a delicate area and he wanted me to see someone who specializes in that area, referring me to Dr. Yeh.I of course googled Dr. Yeh and was impressed with his credentials, to say the least. And I work at UCLA as an Associate Dean, so my office is very near the Medical Plaza where I had my consultation. The good doctor was so accessible – – I got in quickly to see him, and he did the ultrasound to see where the mass was, and determined that it had grown considerably, and was now about 4.5 cm long by 3cm. I liked how confident Dr. Yeh was when he assured me that he could remove this for me, and before I knew it, I was scheduled for surgery on 9/22/08. I named the mass “SAM” for “stupid alien mass”, and wanted it out of me.Two weeks later, I am fine, with no ill effects to my voice or other. This anxiety of approaching surgery did scare me, I must admit, knowing that it was such a large egg-shaped mass in my neck, and not knowing why or how it grew there in the first place. But, Dr. Yeh made me feel very comfortable, and I never had any thought that the procedure would go anything less than perfect. Yesterday, Dr. Yeh e-mailed me the photos of the procedure and the mass, which was interesting (some of my family thought it was disgusting), but I’m not one who gets queasy about those things.So, Dr. Yeh, another satisfied patient…. and while I hope I don’t need your expert hands again in the future, I feel good knowing you are across the street at UCLA in case I ever do.Karim at UCLA
New web site dedicated to education and support of patients with Multiple Endocrine Neoplasia: http://www.amensupport.org
My mother-in-law(65) was operated on by Dr. Yeh about 6 months ago. Here is how it all started.One afternoon while me and my wife were talking about where to go out for dinner, we received a call from the Santa Monica Hospital.Apparently, she had been sitting and waiting for her hair cut appointment. The next thing she knew, she was in the ambulance. She had passed out in the shop but luckily, the people around her called for help. She had had a light breakfast, not knowing what was coming. By the time she had been waiting at the shop, her blood sugar level had dropped a lot ( I believe to 40). Therefore she passed out without even realizing it. What would have happenned if she was somewhere alone?At the hospital she was under the impression that this was all due to lack of food. May be so, but there was a major underlying problem here.I believe she had done an abdominal scan due to having some pain earlier in the month, but the timing couldn’t have been worse.But the minute the emergency doctor heard that she had already a scan, she suggested that it’s probably from her Pancreas.So they did a series of blood tests and realized that her sugar level is not being regulated automatically and something is interrupting it. This is called Insulinoma.So they had her admitted to the Santa Monica hospital, where she was seen by the great doctor Kamdar.His specialty is Endocrinology, which include the Pancreas.He maintained a series of blood teats and confirmed that this is infact Insulinoma. He was fantastic. He immediately put us at ease and told us that this is to be dealt with rightaway by way of removing part of the Pancreas.By the way, the Emergency doctors, staff and most of the nurses were very helpful and understanding.So doctor Kamdar introduced us to the fantastic surgen, Dr. Yeh. He told us that they do this several times amonth and not to worry.They ordered another special scan at UCLA, to make sure of the size and location of the tumor. Yes, there was a tumor her pancreas which was interrupting the life saving regulation of the sugar in her body.Therefore, they will cut it out.The surgery was scheduled rather quickly. We went into UCLA the day of the surgery and she was admitted in. Doctor Yeh saw her about 11:00am. I believe he came for her around 1:00pm to start off the surgery. Doctor Yeh had explaind to us since the Pancreasis glued to the Spleen, he would normally remove the Spleen along with part of the Pancreas. The tumor was in the middle of the Pancreas, benign(not cancerous)however which makes a huge difference. He also mentioned since there are a few polyps in her gull bladder, now is the best time to remove that too. So he did.The surgery took about 4 to 5 hours. It was to be done thru 3 holes and a small cut in the abdomen(laproscopic surgery). This was good news because this way her abdomen would not be cut wide open and there would be much less pain and a shorter recovery period.As soon as the surgery was over, Dr. Yeh came to us in the waiting area and told us that everything went fine. We saw her a couple hours later after she had recovered a little bit from the anesthesia. It looked like she had aged 15 years in 5 hours. But that was just temporary. She had some pain, but the key was to take the medication to avoid it. While at the hospital, she was looked after by Dr. Yeh, Dr. Kamdar and other fine doctors and nurses. She was there about 6 days, but it was imperative to move and walk to avoid blood clots.Towards her last days at the hospital it was obvious that her sugar level is stabilizing. She had a tube hanging from her for drainage.The disappointing part of all this was the hospital. The Medical building that we were in was very old and about to be vacated and moved to the new building.She has been seen by Dr. Yeh and Dr. Kamdar during the past 6 months for follow ups. Everything looks fine so far due to the fine surgery that Dr. Yeh performed along with Dr. Kamdar’s expertise and collaboration from beginning to end.She has to take some Enzyme pills now to help her with digestion.I hope no body has to go thru this, but if so let it be Doctor Kamdar(in Santa Monica, CA), Doctor Yeh at UCLA and his team.Please do your own due diligence, but in my opinion they are the best for this kind of sub-specialty.Good luck and our sincere thanks to Dr. Kamdar, Dr. Yeh, his team and all other doctors and nurses.
Since I had insulinoma surgery only nine weeks ago and just posted, I am interested in knowing whether your mother’s passing out in the beauty salon was her first indication that she had hypoglycemia. How long had she had symptoms before that? Did she have lows throughout the day and night as I did? I hope she is still doing well.
Sylvia
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BEST CHRISTMAS EVER I have received the best Christmas gift ever this year: my wife and son’s health.NEVER GIVE UPOur family is finishing the most difficult year of our lives, but it is ending very well. We faced many problems but several good people helped us along the way and my wife and son are fighters. If you or someone you love is struggling with a serious medical problem do not give up hope. You can make it through too.WRONG CREW FOR THE JOBIn December, 2006 my wife developed a perforated ulcer from excessive acid production due to Zollinger Ellison Syndrome. She had several surgeries at our local hospital in order to try and find and repair the problem. Unfortunately she also contracted several very serious “hospital acquired” infections. After over three months in the hospital and several brushes with death the doctors basically gave up and sent her home. The case worker from our medical group visited my wife in our home shortly after she was discharged and was alarmed to see the football sized infection on her side. Fortunately she recognized the severity of her condition and quickly made arrangements to have her transported to UCLA for an emergency appointment with Dr. Yeh on Friday, 02-MAR-2007.YEH WALKS US THROUGH THE VALLEY OF THE SHADOW OF DEATHMy son and I met Dr. Yeh about six weeks before my wife’s first appointment during a consultation on parathyroid and pancreas surgeries he needed. Dr. Yeh also completed a total parathyroidectomy on my son the day before he first saw my wife. Immediately after examining her, discussing her medical history and explaining our options he admitted my wife into the hospital and began a full assessment with his team. Initially I was skeptical to learn Dr. Yeh used the team approach for patient care because “team care” at the other hospital meant no one took responsibility and the patient suffered. Team care in the UCLA Endocrine Surgery group works because the team is comprised of experts, they communicate well with each other and with the patient, they have good relationships with other specialty groups and most importantly they have a strong leader. Dr. Yeh completed six surgeries to remove infection in a sixteen day period after first seeing my wife. Her four month stay at UCLA presented many challenges, but she never gave up and neither did Dr. Yeh. Whenever we needed him, he was there. He completed two surgeries on Saturday’s and I remember him working on my wife into the early hours of the morning once in ICU after she turned septic. He is not just a skilled surgeon, he is a dedicated healer.My son also had a large cancerous tumor removed from his pancreas during my wife’s long stay at UCLA. Dr. Yeh assisted on that surgery and looked after him too. He also completed parathyroid surgery on my wife shortly before she was discharged 20-JUN-2007. My wife returned to UCLA to have a nasogastric tube placed again in September for a nine day stay and in October for ten days due to problems with the feeding tube. She was placed on TPN after that and it helped her gain the strength she needed for her latest surgery three weeks ago. Dr. Yeh assisted on that surgery. He and Dr. Cryer repaired her hernia and fistula, removed scar tissue, repaired a hole in her intestine and placed a gastrostomy tube. This surgery took over seven hours and she is recovering very well from that.As you can see, we were good customers for UCLA in 2007!THE BADWe had many grim days this year and I have a lot of bad memories concerning my wife’s condition including:106 degree feverBlood and stool exiting fistulasBlood clotsBlood transfusionsConcluding she may not survive on several occasionsDangerously low blood pressureFeeding tubesFighting with our insurance companyJaundiceKidney failureLegs swollen to twice their sizeMultiple drains and suction pumpsMultiple wound vac’sRemoval of several liters of pus from abdominal wall infections RespiratorMy son developed an infection following his Whipple surgery. This caused severe pain, high fever and he became delirious one night. The return trip to the hospital for these problems was the worst memory I have for him this year.THE GOOD I also have many good memories including:Dr. Yeh’s compassion. He placed my wife under sedation for a few weeks after one of her surgeries so she would not have to endure the pain that followed. He cares.Dr. Yeh’s honesty. I was a bit shocked when he told me she would have a 3 month stay after one of her surgeries, but I knew she would be in good hands and that is what she needed.The exceptional nurses who cared for my wife while she was in BCU and ICU. The wonderful case worker our medical group provided. She arranged literally hundreds of details for my wife and son this year including referrals, authorizations, durable medical equipment, home health care, prescriptions, appointments and transportation. She anticipated our needs and made sure they were all met and always made time to make me laugh when I needed it.Our neighbors. They have been wonderful to us this year. One neighbor has been especially kind and generous. She prepared many delicious homemade meals for us that we could eat for several days and always took time to ask and listen about my wife and son’s progress. She also visited my wife when she was home and we always enjoyed her company. She has been a great encouragement to us and a true example of Christian love.My 99 year old aunt praying for my wife and son daily. Our friends, family and many other people prayed for us too. That meant a lot to us and the prayers were answered time and again.Family. They always supported us. My sister in law dropped everything and flew in to care for my wife twice this year. She was so compassionate and self sacrificing and continues to check on us several times each week. My parents have been amazing in their dedication and love for us. They sat with me in the hospital waiting area during every surgery my wife and son had and drove me up to UCLA to see them many times. They helped in countless other ways too. I cannot imagine having better parents.My son’s courage. Facing a surgery as big as the Whipple procedure and its recovery is very difficult. I am very proud of my son for getting through that.My wife’s attitude. She made a joke during one visit when my parents and I visited her. She was in bad shape but made the best of the situation. My dad commented about her positive attitude and she replied “well they didn’t remove my sense of humor”!CONCLUSIONMy wife stayed 178 days in the hospital in 2007. Her attitude and faith helped her get through this ordeal and I respect and love her even more for that. We have been married for 23 years and have always been close. This year has brought us even closer and has reminded me how precious she and my son are to me.My wife is getting stronger every day and we are able to go shopping and take day trips together again. Her wounds are healing quickly and take very little time and effort to care for. Soon she will be even stronger. My son started his first year of college and a new job in September and is doing very well. It’s great to see him enjoying his life again. Theirs is truly a success story and I trust it offers you hope.Merry Christmas!
Jim, your success story is both touching and inspiring, and you are right: Dr. Yeh is the best! Your family went through so much–how wonderful that you had such great support from family, friends, and neighbors and how fortunate that you found Dr. Yeh! I personally believe God guides the hands of great surgeons like Dr. Yeh. Your story humbled me: I had an insulinoma removed 9 weeks ago, and I thought my 8 months prior to surgery to be torturous, but as I read your family’s story of such serious conditions, the suffering, being near death, I realize once again that there are usually, if not always, people with worse illnesses. When I started to feel sorry for myself occasionally during the last eight months, I reminded myself of that fact! I hope and pray that your wife and son are still doing well. God bless you and your family.
Sylvia
I had been experiencing symptoms of notable fatigue, clearly reduced energy, restlessness, difficulty at times organizing my thoughts, increased discomfort from my symptoms of GERD (gastrointestinal reflux disorder), a markedly increasing dry skin all over my body causing constant itchiness, disturbing hot flashes (mostly awakening me at night), and interrupted restless sleep for a few years.Initially, I dismissed these symptoms as signs of aging, as I started to notice them in my sixties. As the symptoms increased in intensity, I persisted with my primary physician and he ordered blood work for me. When this blood work indicated problems with my calcium, I was referred to a local endocrinologist. Further tests ensued, and the results indicated notable problems with my thyroid and parathyroid glands. At this point I was referred to Dr. Michael Yeh at UCLA for further evaluation.Once Dr. Yeh learned about the radiation treaatment that I had experienced as a child to dissolve scar tissue formed in my ear canals (causing unremitting infections) as a result of measles that broke out only under my skin, he evaluated my blood work and other tests and recommended surgery.I experienced an enormously improved overall sense of well being immediately following the surgery. I now have the “zip”, energy, focus and drive that I used to experience. I am once again excited about my life, my work as well as ongoing adventures. I did not realize how impacted I was from my symptoms until they abated. I sleep without restlessness or hot flashes–both are gone. My thinking is more focused and clear. The symptoms of my GERD are greatly reduced. The abnormal itchy skin has dissipated.I want to take this opportunity to point out to women who might be experiencing bone density problems that I regret today that in 1998 when I was initially diagnosed with osteopenia and prescribed medication to stabilize my bone density that it might have been beneficial to explore the possibility that my parathyroid glands were causing my calcium problem. I have lost 2 inches in height at this point. I hope that all women with bone density problems will at least investigate the condition of their parathyroid glands.It is now 12/16/07 and I am most appreciative to Dr. Yeh and his team at UCLA Medical Center for the gift of my original energetic, excited and focused self back. I did not realize the extent of my personal demobilization until post surgery.I am now an energetic, optimistic and very happy 69 year old woman who looks forward to every single day. I continue my 25+ year career as a licensed Marriage and Family Therapist in private practice in Bakersfield, CA.
It’s been just under 5 months since my surgery, and here’s my very over-due update! Please pardon the length, but I go into detail hoping that it will be helpful to concerned folks.Last time I wrote, August 15th, I was a few weeks away from my next appointment. Day after Labor Day, Sept. 4th, I got the release from Dr. Yeh to return to work, with the drainage still in. I had been away from work for 8 weeks, I was feeling stronger and more comfortable, and decided I was ready to go back, but with some limitations. I was not allowed to fly, due to the stress, discomfort, distance from my medical team, risk of damage/injury to area, that a flight entails. My daily routine was disrupted by the drainage, of course, but not as much as I thought it would be. Normal showers were a challenge, as it’s difficult to avoid getting the drainage site wet! But the occassional quick shower, combined with wipes, did the trick. Getting dressed was never an issue, but sometimes pants, and the waistbands, were a bit uncomfortable! My manager was very kind and understanding, though, and would often let me work from home, so that I could be more comfortable.The biggest challenges I had were doing laundry and grocery shopping. Thankfully, my boyfriend visited me every two weeks from out of state, and he would help me with all the heavy chores. As time went by, I got more and more used to the drainage. I started taking salsa lessons in October, I would go out with friends often, and in the end, I was not impacted so much by the drainage. The one thing I wish I could have been able to do more comfortable was stretching exercises, as my back gets very stiff. Also, my boyfriend took me to a nice dinner in early November, where, along with the dessert, I got a nice engagement ring :).. so life definitely went on!I did stop dancing and other physical activities for a few weeks, after the sutures holding the tube in place came out – I got paranoid about the drainage coming out! Dr. Yeh re-sutured it after we noticed the original ones were out, and since my skin had become soooo irritated towards the end, it would no longer tolerate the tape dressing. The last week that I had the drainage in, after the re-suturing, I didn’t wear a dressing at all. It was secure, and I didn’t get it wet, so it was ok for me.Another thing that also got better with time: the heartburn and reflux that showed up after the surgery. After the third month, it subsided significantly, to the point that now I hardly ever get them anymore. I stopped taking all medicines (sleeping pills I took for about 1.5 weeks, acid reflux meds I took for about 2 months) and in that regard, I’m about back to normal, or at least tolerable levels.As time went by, I was becoming worried that the output was not decreasing as fast as I would’ve liked it to. You see, by December, I absolutely needed to have it out, as I need to fly home to receive my sister’s first child! Dr. Yeh suggested a couple of changes to the drainage, to coax it to finish its job. First, he switched the low-vacuum bottle that had been in since the surgey, and put in its place a gravity bag. While the output did decrease a little bit, this was much more uncomfortable, since I needed to secure it to my leg, and I was constantly paranoid about the flow not getting down to the bag. I had this for the last two weeks of the drainage’s life. Thankfully, on November 13th, the drainage came out. :)The output was decreasing at a rate of about 5cc/month. At the beginning of September, the output was about 20cc. The way I measured it was with a graduated plastic cup that UCLA let me take home after my stay in the hospital. Unfortunately, this is not very accurate at lower volumes. I resorted to buying a baby medicine measuring spoon from my local drug store. This is MUCH more accurate, and made me realize I was already at the 5cc level in early November! This is when the bottle was switched with the gravity bag. Had it taken longer, or had the output been higher, Dr. Yeh suggested installing a stent connecting the fistula to the intestines, so that it would drain internally instead. Thankfully, it didn’t have to come to this.Getting the drainage pulled out was a unique experience… like having your belly pulled outwards.. by the time mine came out, I was pretty much healed inside, so it didn’t hurt, it just felt odd! And it was big! Much bigger than I thought it was. I had grown quite attached to the drainage (call it a love/hate relationship) so I was a bit sad to see it go, but believe me, I got over that hump very, very quickly. :)So, after four long months, I’m back to normal again. The drainage hole closed up in 1-2 days, I am now back to exercising regularly, enjoying a to-date weight loss of 20 lbs… 🙂 I’m back to dancing, back to traveling – just in time to fly for the thanksgiving holiday to spend it with my now fiance, and I look forward to my next trip: home to meet my niece. My fasting blood sugar is still normal, all my symptoms are gone. I’ll have a few lovely battle scars to show off, but other than that, I’m back to normal, and I’m loving it. :DIf you will be undergoing this sort of procedure, please know that my case is not unique. I’ve found others, through the internet, and even though our disease and treatment manifested itself in varying degrees of complexity, we can all agree on one thing: life after insulinoma is THE BEST. The pain and discomfort are TEMPORARY, and you are in good hands at UCLA. Good Luck!
Margarita, I hope you are still doing well–I’m also looking forward to dancing!
Sylvia
Interesting and well produced video discussing MEN1http://www.firstsightcomms.co.uk/Amend/
I recently underwent surgery to remove a 1.3-cm insulinoma (insulin-producing tumor) from my pancreas. Dr. Yeh performed the surgery at UCLA.PROGRESSION OF DISEASEMy family has no history of insulinomas, that we know of, but there are incidences of diabetes on both sides of my family. Neither of my parents suffer from it, though. While it’s not clear for how long I had the insulinoma, the progression can be best summarized as follows:* 2000 – At age 23, first noticed low glucose levels, around 60, during a health fair prick test. At this point, other than the low blood sugar, I was asymptomatic. All subsequent fasting blood tests, in the time since, had always yielded similar low-glucose results.* 2003 – first noticed hypoglycemia symptoms. At the time, during the height of the Atkins diet, I had joined my cousin and was undergoing the “induction phase”, where I cut out all carbs. This lead to shaky hands, numb thighs and chin/mouth, blurry vision, and frankly a feeling of drunkenness – I remember having a meeting with a manager and I couldn’t control my speech, it felt as if I was drunk. This only happened once or twice, so I thought nothing of it, just a side-effect of the Atkins induction.* 2005 – I had never worked out consistenly, but in 2005 I joined a gym and started going regularly. I worked out in the early evenings. I started noticing that, even if I was not tired, I would yawn and felt again the numbness in my legs. Many a time I would have to grab a quick bite to eat before going to the gym, because I knew if I didn’t I would feel too tired and again have those symptoms. Again, I attributed this to the change – exercising regularly.* 2006 – I changed jobs, went from a desk job to one which required me to work 12-14 hrs a day, mostly on my feet. I started noticing those same symptoms from 2003 (numbness, shaking, blurry vision, and weakness) but this time they were stronger and more frequent. After a few weeks I decided to visit an endocrinologist (since my GP had dismissed my low blood sugar before as “normal”, since I didn’t describe any symptoms to him). It’s worth mentioning that all this contributed to a weight gain of about 40 lbs since 2000.DIAGNOSISAfter this first visit to the endocrinologist (not at UCLA), this is where the diagnostic process started, which went as follows:* Full endocrine panel, including fasting blood sugar, insulin, proinsulin, and c-peptide. My fasting blood sugar was around 35-45, my insulin ranged from 17 to 28 during these fasting tests. Proinsulin and c-peptide were also outside the normal range. With these results, my doctor suggested it may be a tumor, but one so rare, that he wasn’t sure it could really be the cause. He repeated these fasting tests several times, had me measure my blood sugar with a portable meter whenever symptoms arose, and they were always in the same low range. Finally he started looking for the tumor (insulinoma).* CT-Scan — this was ineffective in finding the tumor. The endocrinologist I was seeing did not order the correct resolution, this may have contributed to it. * Octreotide scan — this was also ineffective in finding the tumor. What I’ve been told since is that this works if the scan is done within seconds of injecting the radioactive substance. The scan itself took about 20 minutes and it was not done immediately following the injection. I was very lucky my insurance company paid for this scan, as it was also VERY expensive (about $8,000). In the end, this was unnecessary.After this second scan did not reveal a tumor, my endocrinologist referred me to UCLA. I appreciate his humility, as he did with the words “I need to send you to someone who knows more than I do”. He could have easily sent me home with meds, but he did not give up on me. Indeed, the whole time he was evaluating me (from September till December 2006) he didn’t give me medications, as he was not sure what was causing it.In January 2007 I started to see Dr. Kamdar at UCLA. His diagnostic process went as follows:* Repeat all the fasting blood tests. Results were the same as before.* Ct-Scan — this time he ordered a higher resolution than before. He ordered a spiral CT of the abdomen with 2mm cuts with contrast. I made the mistake of getting it done at a different hospital instead of UCLA and they did not do it correctly.* Series of fasting blood tests over a 4 hr period. I was at his office where several blood samples were collected while fasting. The lowest result was 26 for my glucose, again with high insulin. Interesting enough, my symptoms during this test were not as severe as they had been in 2006, when I first thought I needed to see an endocrinologist. I will never know what my blood sugar was then, but I can only imagine it must have been lower than that!* Endoscopic ultrasound — Dr Kamdar ordered this as the last resort to try to find the insulinoma. Dr Farrell performed it at UCLA, and he successfully found the tumor near the tail of the pancreas. He conducted a fine-needle aspiration biopsy and the pathology revealed it was a benign neo-plasm. Of all tests I had to undergo, this was the most uncomfortable, and only because of the biopsy. It hurt for about 3 days, but it’s a VERY small price to pay, as this was the conclusive one. Dr Kamdar believes it’s possible the tumor could have been caught with the CT Scan he ordered, if it had been performed correctly.It’s worth to mention that in preparation for the surgery, Dr Kamdar prescribed Proglycem. I took it for a few weeks, and it did increase my fasting glucose levels back to ~100. I didn’t suffer side effects from it, but the taste was not pleasant, though you get used it after a while.SURGERY After the biopsy results, Dr. Farrell wanted to send me for an MRI, but Dr. Kamdar thought it conclusive enough to send me to surgery directly. He referred me to Dr. Yeh.Dr. Yeh saw me the same week I had the endoscopic ultrasound, I was very impressed by how available he was (and continues to be) for anything I needed. My surgery was scheduled as a 4-hour laparoscopy to remove the tumor, with the possibility of the partial removal of my pancreas and a splenoctomy. Indeed, 4 weeks later, the latter is what happened.The tumor was difficult to locate, so the laparoscopy had to be modified to a hand-assisted laparoscopy. I lost about 1/3 of my pancreas and my spleen. I stayed at UCLA Medical Center for 6 days. The care I received there was great, some providers were better than others, but overall I had a good experience.Recovery was slow at first, as I had a lot of pain and discomfort. Walking and breathing exercises were encouraged, and this helped a lot. I wasn’t able to take anything orally for the 1st 3 days in the hospital, so eating and drinking normally was an uphill battle. My appetite was back to normal about a week after I left the hospital. I did stop taking pain medications after about 3 weeks (right after leaving the hospital I switched to Advil, I had no need to take Tylenol 3 or Vicodin). I had trouble sleeping and developed GI problems, but it was all managed with medication and sleeping in sofa instead of my bed!It’s been 5 weeks now since the surgery, and I feel quite well, with no pain and little discomfort. I still feel a little weak, though. Dr. Yeh left a drain in place during the surgery, which I still have. This is helping to avoid infection at the surgery site. I will have the drain still in for another 3 weeks. After such time I’ll post another comment with any follow-ups.
I’ve had many surgeries before coming to ucla and so far I’m more than glad I did. I’ve been told that all those surgeries I’ve had in the past could have been prevented but I guess we all live and learn.
WHAT I HAVE LEARNED ABOUT MEN1 THE PAST 23 YEARS OVERVIEW My wife, age 45, and son, age 18, both have MEN1. They were diagnosed at ages 34 and 15 respectively and both suffer from tumors on the pituitary, parathyroid and pancreas. In addition to the typical endocrine problems associated with MEN1, my wife has Zollinger-Ellison Syndrome and my son had Cushing’s Syndrome before his pituitary tumor was removed. Living with MEN1 is difficult, but learning everything you can about the disease, finding the finest medical professionals and appropriately responding to the medical problems you face helps significantly. DIAGNOSIS My wife had acute hyperparathyroidism a few months before we were married 23 years ago. While we did not realize it then, this was the first major problem she had related to MEN1. Three years later she had a cystadenocarcinoma removed from her pancreas. After that she had several lipoma’s removed and had two more surgeries for hyperparathyroidism. During the twelve years from her first parathyroidectomy until her diagnosis of MEN1 she had consultations with several doctors but none of them diagnosed her disease. Only after taking her for a full assessment at Scripps Clinic in La Jolla, CA was she diagnosed properly. CHALLENGES ENCOUNTERED FINDING APPROPRIATE CARE We have encountered several challenges finding appropriate care for my wife and son. None of their primary care physicians had ever seen an MEN1 patient and had only heard about this disease in medical school. They often discounted my wife and son’s complaints and symptoms and did not refer them to the experts they needed. We saw several endocrinologists too, but they had little or no experience with MEN1 patients either. They usually showed great enthusiasm initially since MEN1 is so rare and challenging compared to their typical patients problems. Over time the enthusiasm degenerated into frustration since MEN1 patients require so much attention and time to properly monitor and manage their disease. Sadly, frustration often turned into resignation. While they never stated it, I could tell they simply gave up on us. Obtaining referrals from our insurance company for specialized blood work and scans has been very challenging too. UCLA has the resources required to treat MEN1 patients. While we have only been going there for about a year, we are very grateful to have access to their doctors, diagnostic facilities and hospital. No other medical center has come close to their ability to meet my wife and son’s specialized medical needs. SURGERY My wife and son have had several endocrine surgeries. Following are general notes about each major type. Pituitary Successful pituitary surgery requires great skill and experience. While it is not considered brain surgery, the pituitary gland is located at the base of the brain so a brain surgeon is usually the best person for this job. My son developed blood clots in both legs following his pituitary surgery. If the hospital (not UCLA) used intermittent pneumatic leg compression and were more diligent on having him walk during his recovery the blood clots may not have developed. Parathyroidectomy All of the parathyroid surgeries my wife and son have had have been relatively straight forward. The skill and experience of the surgeon is very important on this type of surgery too. Every additional parathyroid surgery becomes more challenging and the risks increase, so getting it right the first time is important. My son’s last parathyroid surgery went so well that he only had to spend one night in the hospital and was able to walk from UCLA to In and Out Burger to eat lunch the next day! If your calcium levels drop temporarily after surgery, your hands, feet and lips may tingle or become numb. Take Tums to increase your calcium levels as your doctor advises. If you let your calcium levels drop too low you may have a seizure. Taking Tums to prevent this problem is a lot easier than blacking out, biting your tongue and hitting your head on the ground! My son had to learn this the hard way… Pancreas My wife had pancreas surgery 20 years ago and my son had a Whipple procedure earlier this year. Dr. Reber from UCLA was the lead surgeon and he and his staff was wonderful to work with. You definitely need the best, most skilled surgeon you can find for this complex operation. Unfortunately my wife and son both developed infections following their pancreas surgeries. Make sure the nursing staff caring for you follows proper infection control protocol. ADVICE Our faith has helped us deal with MEN1 more than anything else. Attitude counts. A sense of humor helps. If you need a specialized test, push your doctor, medical group or insurance company until you get it. Tell them the key to managing this disease is early detection. If they balk at the cost of specialized tests, remind them the cost of treating advanced stages of the disease is higher. Much higher. Find a doctor that you trust and who has good communication as well as technical skills. Make sure he is well connected in the MEN1 research community. Treat people the way you want to be treated. Doctors, nurses and office workers have bad days too. If your requests are reasonable and you ask politely, yet they continue to treat you poorly then find another caregiver. Make sure whoever you choose for pituitary, parathyroid, or pancreas surgery has significant experience with these surgeries and does several every month. A general surgeon is probably not the best person for these operations. Follow your gut. If you do not have complete confidence in a doctor, find another one. Keep detailed records. Request copies of all blood work, scans, surgical and pathology reports. Summarize this information. Offer only the summary to doctors during your first visit because they may become intimidated if you present too much information too soon. Find an advocate. You have enough problems to deal with your illness. If you do not have anybody to advocate for you, become your own advocate. Listen to your body. If you have pain there is a reason for the pain. Find the root of the problem. Ask your medical group or insurance company to be assigned a case worker. We have had a case worker for almost a year now and she has been a godsend. We did not even know this option was available before it was offered to us. A good case worker understands your specialized needs, knows the system and can get you the care you need faster and easier than you can get it for yourself. Do not believe everything you read. Consider subscribing to the following MEN1 related groups: http://listserv.acor.org/archives/men1.html http://health.groups.yahoo.com/group/MEN1/ http://www.caringforcarcinoid.org/ http://www.carcinoid.org/ Never give up. CONCLUSION MEN1 has helped me appreciate what is truly good and important in life. I have never met an MEN1 patient face to face except for my wife and son, but have developed email friendships with a few MEN1 patients through the internet. Living with MEN1 is difficult. I have deep respect and admiration for the fight and determination these people have to make the best of living with their disease.