Treatment options for pheochromocytoma depend on several factors, including: If you have pheochromocytoma that causes symptoms due to excess adrenal hormones, your healthcare provider will likely recommend medication to manage the symptoms. not good for a mental health nurse. Youve been diagnosed with pheochromocytoma before age 40. Whats Wrong With Me? Multiple endocrine neoplasia type 2. Hypertension is the most common symptom. Where Can I Find Clinical Care Recommendations and Practice Guidelines? To Own every thought in my head meant I had to stay in the present and resilient. Coming to a Cleveland Clinic location?Hillcrest Cancer Center check-in changesCole Eye entrance closingVisitation, mask requirements and COVID-19 information, Notice of Intelligent Business Solutions data eventLearn more. Mayo Clinic. This content does not have an Arabic version. The adrenal glands are vital to your well-being and they play an extremely important role in producing the hormones that we need, particularly during times of stress, as well as regulate your metabolism, immune system, blood pressure and other essential functions. Problems in the cortex or the medulla, then, can result in high blood pressure. These symptoms can come on suddenly, like an attack, several times a day. Black swan is often a metaphor which describes an event that comes as a surprise, has a major effect, and is often inappropriately rationalized after the fact with the benefit of hindsight. My best wishes for good health! However, some pheochromocytoma tumors dont make extra adrenaline or noradrenaline and dont cause symptoms (are asymptomatic). Chemotherapy is usually given intravenously through a vein (intravenously). The adrenal glands are found above each kidney. Most patients with pheochromocytoma have high blood pressure. And all that came along with this the self-doubt and the polite doubt from my loved ones. The more I learned about the pheochromcytoma community, the more thankful I am that mine was diagnosed as early on as it was. 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If your surgeon removes both of your adrenal glands, youll need life-long hormone therapy to replace hormones made by your adrenal glands. National Cancer Institute Center for Cancer Research. incidence among the general population is about 0.8 per 100,000 person-years, and is estimated to be 0.1-0.6% in the hypertensive population. We support and improve urological care by funding research, developing patient education and pursuing philanthropic support, worldwide. 85% of these tumors are located within the adrenal gland. This is not a complete list of side effects and others may occur. Visit SHOP & OWN IT for the BEST fitness and motivational products that will UPLIFT your physical and emotional health! Hereditary cases are seen more often in young patients. They only last maybe 15 minutes or so, but they are horrible! Experts don't know what causes these tumors. Medication that blocks the effect of the excess hormones released by your adrenal gland(s). You have more than one tumor in one adrenal gland. Usually, a pheochromocytoma develops in only one adrenal gland. So my bloodwork was generally normal but the red flags in the results in my 24-hour urine (catecholamines/metanephrine) collection results. Young WF. So I will keep you in my thoughts and prayers. Nearly 50% are thought to be due to germline mutations. So this is for the Zebras and the Black Swans for those between points A and B. My name is Cristy Justice I am 100% sure I have a large Pheochomocytoma having difficulty getting diagnosed in my small town area my symptoms are worse I have been suffering with this for years I am 53 now i also have no insurance and get pushed away like Im nothing no one believes me help! Please go to the Instagram Feed settings page to create a feed. Yes, many have insomnia as one of many symptoms in dealing with these tumors. Only the most meaningful messages will land in your inbox! Hi Joleen Oh Im so sorry to hear that NOT ONLY are you dealing with pheochromocytoma symptoms but sounds like youre getting pushback from your doctor to go for further testing! 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Combined Federal Campaign This can lead to high blood pressure and cause symptoms such as severe headaches, irritability, sweating, rapid heart rate, nausea, vomiting, weight loss, weakness, chest pain, and anxiety. Pheochromocytoma Symptoms. In this procedure, radioactive MIBG (Iodine 123 (1231)-metaiodobenzylguanidine) is injected into a vein. Less common symptoms of pheochromocytoma include: Pain in your chest and/or abdomen. They kept me tethered from each stressful moment to the next by only a thin, fragile string of hope. The youre a busy mom and of course you are stressed out conversation. Open surgery, or traditional laparotomy, is more involved. that are real and detrimental. The center of your adrenal gland is called your adrenal medulla. I just desperately needed a doctor to listen and care enough to say, lets keep digging, lets not rush to judgement, lets think outside of the box, I am not letting you walk out of here feeling unheard., As I sat in the chair of my third cardiologist, who had exhausted both of us with a multitude of exams concluding that I have a healthy heart (thankfully) she remarked, You know, you should get checked by an endocrinologist. Because of that, they will not order MRI and I will have to do a bankruptcy if I have to pay for one. Just a quick question regarding your tests. The tumor develops in specialized cells, called chromaffin cells, located in the center of an adrenal gland. How was it when I exercised I felt okay but at rest was when I experienced these horrible symptoms? This site complies with the HONcode standard for trustworthy health information: verify here. 2014; doi:10.1210/jc.2014-1498. Pheochromocytomas are rare tumors. There's no standard staging system for pheochromocytoma if its cancerous. The term pheochromocytoma (in Greek, phios means dusky, chroma means color, and cytoma means tumor) refers to the color the tumor cells acquire when stained with chromium salts. What if she hadnt kept digging? Why did your dr. keep searching for the pheochromoyctoma? I know my body. It sounds like a common situation in one respect meaning that pheochromocytoma symptoms often mimic other conditions and manifest in to other serious problems as a result. I valuefriendships and family. After treatment, the outlook is good for most patients. On one particularly mentally exhausting day, my doctor, my hero, promised me one last test. These foods include: Certain medications that can make symptoms worse include: Although high blood pressure is a primary sign of a pheochromocytoma, most people who have high blood pressure don't have an adrenal tumor. All my best xo I eventually settled on scheduling an appointment with this random endocrinologist. You simply mustown your journey to truth. I wish you a swift recovery. The adrenal medulla makes the hormones adrenaline (epinephrine) and noradrenaline (norepinephrine). Their job is to keep the body in balance by making various hormones that are critical for maintaining good health. A pheochromocytoma is a rare, usually benign, tumor that can cause life-threatening high blood pressure (hypertension).The tumors produce too much catecholamine hormone [such as norepinephrine (noradrenaline), epinephrine (adrenaline), and dopamine] which can cause episodes of high blood pressure.In about 10% of cases, pheochromocytomas are malignant (cancerous) but they can be cured if they . Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells by killing the cells or by preventing them from dividing and multiplying. Experience the best Mindfulness Meditation techniques click here.. Advertising revenue supports our not-for-profit mission. Im so thankful that your pheo was found. Isnt that odd that we both called them that. We have an adrenal gland above each of our two kidneys. American Heart Association. Pheochromocytoma Pheochromocytoma is a rare tumor of adrenal gland tissue. Get me through the night. Its important to know that adrenal surgery is complex. So yes, pheochromocytoma symptoms were even worse at night due to lying in bed. We do not endorse non-Cleveland Clinic products or services. Ive had terrible stress, anxiety, feelings of doom and dread. Then 18 months ago after nearly crashing on the freeway I saw a GP and was sent to ER with hypertensive crisis. Please enable Strictly Necessary Cookies first so that we can save your preferences! Approximately 90% of pheochromocytomas are successfully removed by surgery. New England Journal of Medicine. Please keep us posted too we care and want to know how you are. It helps to choose a surgeon who has significant experience with surgery in the area around the kidneys and adrenal glands. Andersen G, et al. Uncontrolled bleeding in your brain (cerebral hemorrhaging). Sudden attacks often last less than 1 hour. The outer layer of your adrenal gland is called your adrenal cortex. So yes, pheochromocytoma symptoms were even worse at night due to lying in bed. The Urology Care Foundation is a driving force in the discovery of new treatments, because we invest in the next generation of researchers. It showed a massive tumor growing on my right adrenal gland, down my kidney and liver and entangled in blood vessels. Please keep me posted xo. The lower points represent the bottom number of the reading (diastolic pressure). It often presents with the classic triad of headache, palpitations and generalized sweating. Crawford MH, ed. I can certainly see why you had open surgery with the size of your pheo. About 1 in 1,000 people with high blood pressure has a pheochromocytoma. I know I have a benign tumor on my kidney and when I researched it it listed all the things I experience. This was a bittersweet time for sure. Doctors are taught when examining a patient to weigh the symptoms and settle on the most common and highest likelihood diagnosis. If your health care provider suspects pheochromocytoma, some standard tests that are done are: Next, CT scans or MRI testing will help your doctor find a mass, its location, and the extent of the problem. According to Drugs.com, the mechanism of action is described as: "Antiemetic; antivertigo agentThe mechanism by which meclizine exerts its antiemetic, anti-motion sickness, and antivertigo effects is not precisely known but may be related to its central anticholinergic actions. The symptoms include pain and stiffness in the lower back and buttocks. Tyramine is common in foods that are fermented, aged, pickled, cured, overripe or spoiled. Youve Got This.. Common pheochromocytoma/PPGL symptoms may include: high blood pressure, either continuous or episodic, palpitations, headaches, and sweating. The majority of these tumors are benign. Required fields are marked *. Usually, pheochromocytoma affects only one adrenal gland, but it can affect both glands. The hospital stay is 1 to 2 days if blood pressure is well controlled. I had an MIBG scan which didnt show the tumor and also had a CAT scan which I found out later did reveal the tumor however the radiologist missed it. Young WF, et al. These genetic conditions include: High blood pressure can damage organs, particularly tissues of the heart and blood vessel (cardiovascular) system, brain and kidneys. They are part of your endocrine system. Get me through what had seemed to everyone else an ordinary day. The tumor is made of a certain type of cell called a chromaffin cell, which produce and release the hormones that cause the fight or flight response. If pheochromocytomas are left untreated, they can potentially cause serious, life-threatening complications, including: Some people with a pheochromocytoma may also be at risk of developing a stroke or heart attack (myocardial infarction). For example, they help regulate fluid and salt levels in the body that affect blood volume and blood pressure. Learn how a clinical trial may be a good option for you with this informative video. We had exhausted many and, well this is for another story, but during this journey the possibility of thyroid cancer was looming. It wasnt until a pheochromocytoma diagnosis was suspected that I had ever given thought to the purpose or location of my adrenal glands (unless I was about to speak in public or fly!). If youre diagnosed with pheochromocytoma, your provider may recommend genetic counseling to find out your risk for having an inherited syndrome and other related cancers. But when I was in the momentin the momentssuffering through those eternal episodes going through the motions of my life, I had few resources to get me from point A that being searching for answers to point B THE Answer and THE Resolve. An extreme drop in blood pressure upon standing suddenly (. But if you continue testing the 24 hour urine collection is a must! Going through the process of this currently. That was the diagnosis by every doctor and specialist that had examined me. Most of the chromaffin cells are in the adrenal glands. xo Maggie, Hi there I am It is important to diagnose this problem early. Blocking the blood flow to your adrenal glands helps kill the cancer cells that are growing there. I dont know but Ive had so many unusual symptoms. [1] Symptoms are usually episodic and tend to progress as the tumor grows. Please see and endocrinologist and insist on more tests. I was thankful to receive the confirmation that I wasnt crazy. My chiropractor who I have seen for 30 years is who suggested get test for pheo. The best and worst day ever. If pheochromocytoma is diagnosed before age 50, genetic screening is helpful. Pheochromocytoma causes a variety of signs and symptoms, including (in alphabetical order): Abdominal pain Constipation Chest pain Dizziness Elevated blood sugar Facial flushing (redness) High blood pressure Increased respiratory rate Nausea Nervousness, anxiety, and irritability Pale skin tone Rapid heart rate and heart palpitations Neuroendocrine (carcinoid) tumors (adult). If it is not treated, it can lead to a heart attack, stroke, and cause the arteries to work poorly. So I needed surgery soon should the pheo not be found. In most cases of pheochromocytoma, the exact cause is unknown, and it occurs randomly. If a pheochromocytoma isn't treated, severe or life-threatening damage to other body systems can result. It's certainly been one of the big issues for me- I do ok for a while, then as the s/s return insomnia is one of my first signals that something's up again. Radiation therapy. Strictly Necessary Cookie should be enabled at all times so that we can save your preferences for cookie settings. Thus this avoids arriving at exotic medical conclusions and running unnecessary tests. It puts a knot in my stomach to experience first hand the commonality for women often being dismissed in the doctors office for these pheochromocytoma symptoms (or any other mysterious symptoms!) Get me through work. Mayo Clinic; 2020. Talk with a few surgeons before you choose one to work with. Pheochromocytomas are a rare type of adrenal tumor of the medullary chromaffin cells. The healthy part of the gland remains. For more notsoexciting info, follow this link. Was told it was malignant hypertension and given medication. Pheochromocytoma is often associated with paroxysmal hypertension. If the tumor is in one area only or has spread to other places in your body (metastasized). Tumors are also more likely to occur in both adrenal glands. Unusual sweating. (https://www.cancer.gov/types/pheochromocytoma/patient/pheochromocytoma-treatment-pdq), (https://rarediseases.org/rare-diseases/pheochromocytoma/), Visitation, mask requirements and COVID-19 information. We spent over 4 months looking for the pheochromocytoma I surely didnt have. Researchers dont know what causes most cases. A pheochromocytoma (pronounced FEE-oh-KROH-moh-sy-TOH-muh) is a rare tumor that forms in the center of one or both of your adrenal glands (adrenal medulla). The most common symptoms of pheochromocytoma are: headaches heart palpitations sweating Other symptoms that can occur during an episode or independently include: nausea stomach pain weight. Symptoms may include: Very fast pulse Feeling that your heart is beating fast or fluttering (palpitations) Pounding heartbeat Headache Nausea Vomiting Clammy skin Shaking (tremors) Anxiety The symptoms of a pheochromocytoma may seem like other health problems. People with MEN 2B have tumors of nerves in the lips, mouth, eyes and digestive tract. My mother had pheo and you would think that would be enough for them to continue but it is not. Although they are usually benign, pheochromocytomas often cause the adrenal gland to make too many hormones. Past surgeries: Right hernia and right and left eyes to correct "alternating lazy eyes". Shocking that your mom had one and that alone doesnt warrant continued tests. But the tumor can develop at any age. Nausea and/or vomiting. Typical symptoms include: Severe Headache Palpitations or rapid heart rate Profuse sweating Flushing or feeling hot Chest pain or chest pressure Are pheochromocytomas dangerous? Endo thought it was pheo but quit when bloodwork came back negative. In the days leading up to my adrenalectomy surgery, I was prescribed phenoxybenzamine to control my blood pressure and prevent intraoperative hypertensive crises. Mayo Clinic is a not-for-profit organization. The attacks may last longer, and become more frequent and severe, as the tumour grows. My results were through the roof which was what kept my doctor digging. Approximately 25% to 35% of people who have pheochromocytoma have a hereditary condition (passed through the family) thats linked to pheochromocytoma, including: Pheochromocytomas may also be caused by mutations (changes) of one of at least 10 different genes. If you have a pheochromocytoma, your provider may recommend a type of surgery called adrenalectomy to remove one or both of your adrenal glands. She heard me. Im hoping I can find some answers as I feel like Im going mad . Could i get some more information on what MRI exactly they ran that found the mass? And the infamous, youre blood pressure is a little elevated, probably a touch of white coat syndrome diagnosis. Little did I realize at the time that learning how to declutter my mind so that I could focus and prioritize the situation at hand would change everything. AskMayoExpert. Now you are on the other side of this horrific ordeal, and I wish you continued healing both physically and emotionally. A pheochromocytoma incidence is so rare and it reminds me that I can no longer take anything for granted. Abdomen. A pheo is a rare tumor that usually develops in cells of one of the two adrenal glands. Still between points A and B, I continued through a series of tests that ultimately sculpted me in to a different human being today. Weakness. If you do have a pheo, once they find it and address it, you will feel like a new person. Ive come to reflect on the medical professions philosophy, which almost killed me, to help me navigate lifes mysteries. Blood plasma results not due back for several days (blood draw on Monday, results due Saturday). I had a 9cm Pheo removed April 2nd 2019 The area of the brain that signals when you're awake or asleep breaks down in people with Alzheimer's. That could cause sundowning. They can be brought on by physical, emotional or drug related issues. However, only about 1 in 1,000 people with high blood pressure has a pheochromocytoma. Call your doctor for medical advice about side effects. A few patients still experience high blood pressure after surgery. These symptoms can include: High blood pressure Headaches Irregular heartbeat Sweating Lab Tests: If you have symptoms of pheochromocytoma, your doctor will order lab tests of your urine and blood to check your hormone levels. Was diagnosed with POTS and my sitting to standing blood test showed high catecohlamines in my blood suggesting hyperadregenic POTS. Accessed Dec. 15, 2021. This is when dizziness, blurred vision, and headaches begin. Many adults have experienced dizziness. A healthcare provider may suspect a diagnosis of pheochromocytoma after reviewing the following factors: Your healthcare provider may use the following tests and procedures to diagnose pheochromocytoma: After your provider has diagnosed pheochromocytoma, theyll likely perform additional tests to see if the tumor is benign or malignant and if it has spread to other parts of your body. Finding and treating it could cure unsafe blood pressure. One night about three weeks ago I awoke to another episode, but this one didnt stop. Catecholamine-producing tumors, like pheochromocytomas, cause excessive secretion of catecholamines which lead to serious health consequences. Your immune system may also be working. Hi Leta, Mayo Clinic does not endorse companies or products. Where A was when you felt as close to normal as anyone could . The Urology Care Foundation offers free, evidence-based patient education materials on urologic health to patients, healthcare providers, and the general public. And those words helped me transition from not just saying that I was trying my best to persevere from doctor to doctor and medical website to medical website to find answers I had taken ownership of my well-being. We do this to give you the best experience on our website. Best Practice & Research Clinical Endocrinology & Metabolism. You are not added to any lists and your information is never sold nor shared. Ive been in a six week nightmare and my dr (who has only met me 3 times in my life) doesnt believe pheo could be possible because its rare. Cancerous cells from a pheochromocytoma or paraganglioma most often travel to the lymph system, bones, liver or lungs. National Organization for Rare Disorders. Other Typical Signs and Symptoms of Pheochrmocytoma Include: Headaches (severe) Excess sweating (generalized) Racing heart (tachycardia and palpitations) Anxiety and nervousness Nervous shaking (tremors) Pain in the lower chest or upper abdomen Nausea (with or without vomiting) Weight loss Heat intolerance Weight loss Recent onset of hypertension Meclizine is an antihistamine with anticholinergic properties. Show of hands if you were just as clueless until now? If you disable this cookie, we will not be able to save your preferences. So I was extremely lucky on how small it was considering how much damage it was doing to my health even at that size. This content does not have an English version. Headaches like a tight band mainly on waking early hours and feeling wiped out and lethargic I settled on this random and junior doctor at a practice she was available. Accessed Jan. 12, 2020. The word I was told not to Google. Try joining this support group on FaceBook there are so many people with varying experiences and someone may be able to give you a new direction to go in. This means that every time you visit this website you will need to enable or disable cookies again. Strangely the most ordinary and subtle of movements would prompt these intense pheochromocytoma symptoms. A pounding, fast or irregular heartbeat. 2018; doi:10.1093/nutrit/nuy036. If your thyroid is off, that could cause some of your symptoms.. Andin between each ordinary day find a doctor who can help figure out what is happening to me. 24-Hour urine tests to measure hormone levels. Brenda wow what a traumatic ordeal youve been going through! Signs and symptoms of pheochromocytoma happen when the tumor releases too much adrenaline (epinephrine) or noradrenaline (norepinephrine) into your blood. 1998-2023 Mayo Foundation for Medical Education and Research (MFMER). The symptoms and signs of a phaeochromocytoma can include: headaches heavy sweating a rapid heartbeat (tachycardia) high blood pressure a pale face feeling or being sick feeling anxious or panicky shakiness (tremor) Scintigraphy (MIBG scan): Most of the time, a pheochromocytoma can be detected with a CT or MRI. Anger, irritability put down to ? Phaeochromocytomas are functional tumours that arise from chromaffin cells in the adrenal medulla. Other symptoms may also be controlled before the tumor is removed. I call them episodes also and not attacks. [6] This can be very dangerous, as it causes very high blood pressure. If you have any questions about your risk of developing a pheochromocytoma, talk to your healthcare provider. A single copy of these materials may be reprinted for noncommercial personal use only. We support and improve urologic care by funding research, developing patient education and pursuing philanthropic support. Thus, I knew something was brewing inside. Medications may include: Treatment options for pheochromocytoma include: Together, you and your healthcare team will determine a treatment plan that works best for you and your situation. Hello, I will do my best to explain and please forgive my lack of medical terminology. Past diagnoses: Hypertension, adrenergic Spells, adrenal hyperplasia, and anxiety . From conditions to treatments to surgical devices and more, we've put everything you need to know about urology in one convenient place. You have signs or symptoms of higher-than-normal catecholamine levels in your blood. Maggie, Hi Brenda i wish you the best with your surgery. Sbardella E, et al. The pain can be so severe that it can keep you up all night. Those words kept me going. Thank you. Our Antivert (meclizine HCl) Side Effects Drug Center provides a comprehensive view of available drug information on the potential side effects when taking this medication. The term is based on an ancient saying which presumed black swans did not exist, but the saying was rewritten after black swans were discovered in the wild. We never spam! to B, the outcome which remains elusive and unknown. It is a day that marks the anniversary of a surgery that rid me of debilitatingly mysterious symptoms and a rare tumor called a pheochromocytoma (pheo for short). Just want to confirm that this, or any of your doctors, is an endocrinologist. 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