https://youtu.be/xpCUxIuB7gQ Very Important Project for our MEN2 community! Watch this video to learn how you can help current and future generations who have MEN2.We are proud to partner with MD Anderson and University of California San Francisco in this registry project. From our Executive Director, Linda Hageman, RN: “This project is an important step toward gathering information to help MEN2 and MTC patients and their families. We are honored to help support it and encourage our community of patients and caregivers to join the study.”

linda.hageman@amensupport.org

• Linda Hageman

https://pubmed.ncbi.nlm.nih.gov/32229700/

My grandmother died from complications of MEN 2A when I was 2½. She had been seen at NIH and Washington University, so that was the connection to the medical team. My mom and my aunt and uncle were diagnosed with Medullary Carcinoma of the thyroid and had surgery to remove the thyroid. My mom also had some parathyroid removed. When I was 9 years old, I was diagnosed with Medullary Carcinoma of the thyroid and had my thyroid removed by Dr. John L Wright at Swedish Hospital. It was followed up with radioactive iodine. I was very fortunate that it had not spread to my lymph system. For years, we continued the annual trek to Seattle for tests, but, for me personally, I took a thyroid pill and didn’t think about it much.

Fast forward to 1992, age 24. I moved to Los Angeles in 1992 where I was working and going to College at Azusa Pacific University. I started having symptoms of heart palpitations, night sweats, high pulse, and blood pressure. For two years, I lived with the symptoms getting worse, and doctors not able to help. I had CT scans; I was given anti-­ anxiety meds, anti-depressants, and nothing was helping. I passed out on several occasions and ended up in the ER hooked to a heart monitor and put on blood pressure medication. The ER doctor said to me once, “I can’t believe I’m even looking at you right now.” My pressure and pulse were so high that I should have had a heart attack or stroke. My family back in Seattle thought I was losing my mind, and so did I. Finally, my mom got in touch with my aunt, and they discussed that maybe I had an adrenal tumor like what grandma had. They contacted Washington University and put me in touch with Dr. Terry Lairmore.

I sent my scans to him, had some more blood and urine tests. He called me at work on a Tuesday, gave me beta blockers and said he wanted me in St. Louis on Friday to be prepped for surgery on Monday. He also told me that that I could have a heart attack or a stroke.

I flew to St. Louis for emergency surgery in 1996. I did have a pheochromocytoma. He removed my right adrenal gland. Just months after the surgery, mild symptoms returned. He suspected I had a second one growing on my left adrenal gland. I took medication and lived with the symptoms for another 5 years. In 2011, I went to St. Louis to have my second adrenal removed. A couple of years later, I started having high calcium and parathyroid levels. I was extremely fatigued, had sharp shooting pains in my muscles and bones. I had tests, scans etc. and eventually flew to Temple, Texas, where Dr. Lairmore was now head of Endocrine surgery and oncology at Scott and White (Texas A& M). I had parathyroid surgery. At that time, he was going to transplant the remaining parathyroid into my forearm as some of my cousins have had done.

The surgery was not a success. He could not find my parathyroid glands. He took out everything that wasn’t necessary to find them but was not successful. The night after surgery, I woke up at 3 a.m. with a droopy face, blurry vision and thought I was having a stroke. It turned out to be Homer’s syndrome. The optic nerve was stretched and inflamed from the neck surgery. It has healed somewhat. When I am very tired or sick with a cold or something my right eye will droop a little and not dilate.

I went home to recover. Two years later, he had a 4-D CT scan to detect parathyroid glands, which worked so much better, so we tried again and Bingo! It lit up clear as day, so he knew just where to go in and get it. He had to peel it off of my vocal cord nerve.  I am so lucky to have a doctor with these incredible skills. He is my hero. Because of him, I can still talk and even sing a little.

I have normal calcium levels and parathyroid levels finally and one functioning gland left. I still take Vitamin D, but calcium so far is ok. I am due for a bone density scan to test for osteoporosis.

In the past 20 years, I have had 10 surgeries and numerous chronic illnesses. I have a full life and have worked as a nanny, office manager, HR Manager and recently went back to school to finish my 2 year degree. I always wanted to be a music teacher and am slowly making that goal a reality. I am now a Preschool Teacher, hoping to go back to school maybe this fall so I can be an elementary school teacher. But, as you well know, it is a day-by-day struggle. I am not on disability although there are many days that I wish I were. I still have a lot to give, and I need to support myself.

It has been difficult over the years to find doctors who know about MEN and who can treat it. I have been fortunate to finally find some good endocrinologists here in the Seattle area. I have an excellent Primary care doc. We have yet to find surgeons, oncologists etc. in the Seattle area who have enough experience to be able to do the surgeries that we need with MEN. So, my family still travels out of state to get the best treatment for surgeries.

I am looking forward to helping make a difference for MEN patients and family. I am excited that maybe through this forum I can make a difference, and my struggle could possibly help someone else. I am so grateful to Linda for her hard work and persistence in making this happen!

My Wife and I flew down to Iowa in November of 2007, where I was told I would need a Whipple. I returned to Iowa right after Christmas, and had my Whipple done on January 5th. I am now a diabetic following the surgery, and still have some episodic hypoglycemia, but not to the extent that I did prior to surgery. I also have stable disease, and have been stable ever since the surgery.

Because I have family and friends in Southern California, and I knew that Dr. Yeh at UCLA was very well regarded in the MEN1 community, I decided that it made financial and practical sense to continue my treatment there, with Dr. Odorisio’s approval. In 2009, Dr. Yeh performed the first parathyroidectomy, with forearm graft on me. I then, had to have a second surgery, as the last parathyroid was a bit elusive the first go around, in December of 2013.  My calcium levels were in the normal ranges for the first time in who knows how long up until recently. So it looks like I’m looking at my third surgery here in the fairly near future, but at least it’s just the graft this time!
After the second surgery, I wanted to see what damage the high calcium was to my bones, and I wish I would have sooner, as I have severe osteoporosis at the ripe old age of 39.

As it turns out, I was the first person in our family to be properly diagnosed, but my father, uncle, and my grandfather all passed away seemingly from complications arising from MEN1. Both my brother, and one cousin also have MEN1 issues. So far, I’m the only one who had Insulinoma.

In 2009, I was also diagnosed with Melanoma, however that was able to be excised and I am considered cured of that as well. My dermatologist did say that he has heard of correlations between MEN1 and Melanoma, and seeing how my dad had it as well, I wouldn’t be surprised if that were true.

I continue to be followed closely by my local Oncologist, my Primary care physician, as well as my yearly to semi-yearly trips to UCLA.

Ron lost his niece and my kids lost their mom around a year ago. November 11, 2015 my love lost his battle with MEN1 at 51 years old. This disease destroyed his body. He had all 3 P’s plus. Now I am alone and my heart: broken.