CSRF Members' Letters - Pituitary Tumor

This section includes letters from those who have had successful pituitary surgery as well as those struggling with recurrences. Remember that experienced pituitary surgeons have a 1st time cure rate of 80-90% and low recurrence rates.

Code 1158 Fall2007
GRATEFUL SURVIVOR There isn't a day that goes by when I don't think of my experience with Cushing's Disease. I have constant reminders that my body is not the same, such as my slightly protruding stomach and a few pounds of extra weight I still carry (the endocrinologist says it is as if I had twins), or the few hairs on my chin, times of decreased energy, and what I call 'brain spasms' which are moments when my mind short circuits. How do I live through these moments in time? Very carefully. I remind myself that I don't have the tumor anymore, than I look out at the sunshine lighting up day and take in a breath of fresh air, so grateful to be alive.

Yes, I catch myself from wandering back to the Cushing's memories: when I felt like a Cherub, blown up and uncomfortable in my own skin, emotional, feeling like my blood was racing in my veins, breaking my toes, pimples like a teenager, and the dark mustache I knew everyone could see! I still look for those returning signs, relieved that they have not come back. I was told by my surgeon, Dr. Kelly, who was at UCLA during 12/03 - the date of my surgery - that the Macro 1.4 size tumor would not return. When fear grabs me, during times of fatigue and a rush of anxiety, I reassure myself that these are only aftereffects not the tumor returning. I have my cortisol levels tested every year to confirm this fact, and my levels are normal. However, I went through 'Post Traumatic Stress Syndrome' from all the medical trauma I endured! It took 12 years for the doctors to finally diagnosis this disorder! You can imagine all the ailments they told me I had or that it was all in my head. I was running around to doctors begging for answers but feeling so discouraged, hopeless, and helpless. I tried many medications hoping for a solution, but none came. I did many holistic treatments, to no avail. Little did I know that I suffered from Cushing's Disease/Pituitary Tumor!

One day I walked into a Rheumatologist's office, Dr. David Hallegua, seeking help for my Fibromyalgia and Chronic Fatigue, and the doctor exclaimed I also had Cushing's Disease because of the obvious physical signs I exhibited. We immediately took an x-ray of the obvious 'fat' humps on my shoulders and neck, and he referred me on to a Cushing's specialist who was an endocrinologist in Los Angeles, Dr. Theodore Friedman. I was finally diagnosed! He confirmed I needed to have the tumor removed immediately and we went forth with the surgery. The surgery was traumatic, and the cortisol withdrawals were horrific for months on end; however, positive changes did occur. I dropped most of the weight, my face structure was visible again, my hair became healthy as did my skin, eventually my moods balanced from the 'bipolar' roller coaster of emotions I previously tried to control, and my hormones started balancing. You would think I would be happy and relieved, and I was, believe me! I moved out of Los Angeles, California, and moved to Boulder, Colorado for the slower lifestyle. I started relaxing, and exploring the world around me again. I realized this illness had also given me an amazing gift, one of appreciation for every bird in the sky, every flower that bloomed, every whiff of baked bread, everyday I could walk by the Boulder Creek with vigor, and how I gradually was able to retain information to the point that I could multi-task again! Each little thing was a blessing. I had much gratitude for being alive, remembering the days when I had Cushing's but didn't know it and negotiated with God dark agreements...looking back I am glad that I didn't follow through. What lesson's has this teacher left me with? I live in the moment now, present, not running to the past or the future, just appreciating today. Ah, I have today to live! I have come back into my body, proud of my curves, my soft skin, my long hair, my searching eyes, feeling the calm peacefulness that rests in my heart, and the relaxation in my body. It feels good to experience positive sensations, wanting to walk again around the block, to go shopping for clothes, taking a swim in the heat of the summer, all dressed up going to a dinner party with friends, taking meditation classes at the Boulder Shambhala Meditation Center. I have a social life again! For so many years I hid in my house, heavy and unhappy, discouraged and staying in a dysfunctional relationship that was going nowhere. I didn't know I had an illness, and all I thought was, "who would want me like this", so I stayed in a relationship that lowered my self-esteem more. Yet, there was a sliver of hope, for I never stopped trying to figure out what was wrong, desperate to find a solution, knowing all along that I was NOT just fat and growing older, at the age of 35! My body was betraying me, that was clear. The lesson, to not give up, to have faith. My warrior came out in me. I became a stronger woman through all of this, and moved through the challenges that were dropped in front of me, bomb by bomb. I came through the surgery with flying colors, hard but I did it! Winning round one! Round two, dropping pound after pound of fat. Round three, learning how to walk and breathe easy again. Round four, winning the grand prize, learning how to relax, and to be happy that I am alive.

I was able to provide counseling services again, and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, in person, or in the client's home if they live in the Boulder area. I can always be reached at www.caringcounselor.com There is life after Cushing's Disease!

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Never in a million years would I have dreamed I'd be writing a letter like this. All of my life I'd been an active, athletic girl who loved sports, working out, and being physically active. I was a big runner all throughout high school and never had a problem with my weight. In fact, if anything, I was probably too small and people would comment on how "tiny" I was. I was almost 5'4" and weighed between 110-115 pounds at most. I could eat anything I wanted, never had to worry about dieting, and exercised only because I wanted to, not because I had to.

Shortly after I graduated college in May 2003, I had several stressful events occur which resulted in some major life transitions for me. The biggest of these was selling my house and moving in with the man I am currently engaged to marry. My life started getting back on track again and I was very happy. I noticed I was starting to gain a little weight, and I figured it was probably due to the fact that I had been slacking off a bit (exercise and diet) while adjusting to my new life. So, I decided I needed to start becoming healthier again and I joined a local gym. I hoped to knock off those few extra pesky pounds and get back into shape without any problems. However, this did not prove to be the case. I worked out every day and for hours at a time, but those extra pounds just wouldn't come off, no matter how hard I tried. I even adjusted my diet to the point where I was barely eating anything and still not losing the weight. I thought it was just a part of getting older and my metabolism changing, since I wasn't running and working out the way I had in school. I also started noticing other things like my skin changing and having frequent breakouts. This seemed rather odd to me because I never had problematic skin even as a teenager. I was told by the doctor that adult acne was common and was sent home with prescription facial medicine. My menstrual periods started to get lighter and lighter until they finally disappeared altogether. My gynecologist said this sometimes happens when you're on birth control pills, and I didn't need to be concerned. So, basically I just learned to live with all these changes occurring to my body, believing all my doctors when they said all of it was normal.

I continued to battle these problems for the next couple of years, unsuspecting that I had a much more serious medical condition. Finally, in December 2006, something happened that made everyone realize something just wasn't right with me. I went to the doctor to get my prescription refilled for my facial medicine when he took my blood pressure and got this shocked look on his face. He asked if I felt okay, and when I said yes, he responded that I shouldn't, because my blood pressure was sky high! He immediately said I needed to get some blood work done and when the results came back I was sent to the emergency room and was ultimately admitted to the hospital. During my three day stay I was subjected to numerous tests, scans, x-rays, MRI's, MRA's, etc. and was sent home. After two weeks, my doctor told me he suspected I might have something called Cushing's Disease, and wanted me to visit the kidney specialist I had seen in the hospital. When I told her my symptoms and the prospect of Cushing's she immediately agreed this was a very real possibility and referred me to a wonderful endocrinologist at John Hopkins University in Baltimore, Maryland.

I met with my endo on January 8th, 2007, and upon looking at me and reviewing my cortisol levels diagnosed me with Cushing's disease. She wanted to perform several of her own tests to be sure and also to locate the pesky tumor which had not shown up on any of my scans, MRI's, etc. I was sent home with orders to perform a salivary cortisol test, dexamethasone suppression test, and another 24-hour urine collection. I was also scheduled for an IPSS test which was given a few weeks later. Unfortunately, the test wasn't performed correctly and came back with "slightly negative" results that "looked like they were trying to be positive". However, with all other tests coming back strongly positive, the doctors felt very confident the source of my problem was located in my pituitary gland. Surgery was scheduled quite quickly for me and on February 5, 2007, I had transphenoidal surgery at Johns Hopkins University. The surgeon said he did not see an actual tumor, but took out a lot of "abnormal tissue", comprising the right side of my pituitary gland. I recovered from the surgery quite easily, was only in the hospital for 3 days, and my only repercussion was a temporary battle with diabetes insipidus. Boy, was that fun! Unfortunately, a week after surgery my endo called to tell me the pathology came back and there was no evidence of any ACTH producing cells in the tissue the neurosurgeon had removed. The surgery was unsuccessful. I was completely distraught. I had just undergone major surgery and was no better off than before. I just wanted this nightmare to be over and to able to live my normal, healthy life again.

My endo said before the neurosurgeon would agree to try surgery again, he wanted another IPSS done with more conclusive results since the MRI's were still not showing the tumor. My endo was able to get me accepted into a study at the National Institute of Health (NIH), in Bethesda, Maryland. I checked in at NIH on March 12th and had all of the standard tests and blood work repeated again over the next week and they again all indicated a pituitary tumor. However, again my tumor eluded all MRI's. I had another IPSS test performed correctly by a wonderful doctor and the results were "strongly positive" for a pituitary tumor. I was told I could go home and would be contacted in about two weeks after the doctors met with the neurosurgeon to discuss my case. Weeks went by and I was told nothing had been decided because all of the doctors and surgeons were unable to find time to get together due to vacations, schedules, etc. I started to get impatient waiting, because I was still so sick. I had gained about 40 pounds by this point because I was no longer allowed to exercise due to my high blood pressure. Not that I could have anyway because my muscles had become so sore and tired by this point. It took every ounce of strength I had to walk up the stairs or to the mailbox. Finally my endo was able to contact the doctors at NIH who said they had decided their recommendation was to put me on medicine to ease my symptoms and come back in 6 months for a repeat MRI to see if the tumor would finally show up. If it did, I could have surgery, if not, perhaps radiation. I was very upset by this decision, because I wanted a "quick fix" to my problem, not the potential of months to years with radiation. At first, my endo felt I should still try a second surgery, but then after talking to her boss decided that NIH was probably right in that a second pituitary surgery wouldn't be the best choice for me right now, since my tumor still was not visible. She put me on ketoconazole and set me up with an appointment to see a radiologist at Johns Hopkins to schedule gamma knife radiation.

I was progressively getting worse and worse. I was tired all the time during the day and couldn't sleep at night. I was told that's because my cortisol levels were peaking then. I was eating next to nothing, yet gaining pounds each week. I started losing my hair on my head and gaining it in unwanted places. I was bruising constantly and getting purple stretch marks all over my sides, abdomen, and thighs. I couldn't fit into anything that buttoned and elastic waists became my best friend. I was so embarrassed to go anywhere and didn't want to leave my house. I was absolutely miserable. My endo increased my dosage of ketoconazole and although it did help a little, I still suffered tremendously. The doctor couldn't go much higher on my dosage because she was afraid of possible liver damage.

I met with the radiologist on May 17, 2007. He was very nice and said before he'd agree to give me radiation he'd like me to discuss the possibility of repeat pituitary surgery with the neurosurgeon and get his opinion. I tried to contact the neurosurgeon via e-mail and he told me he'd discuss things with my endo and get back to me. In the meantime, I had a really scary episode which really turned everything around for me. One evening, I was with my fiancé and I noticed my feet starting to swell. When we got back to our house, I put my feet up, but the swelling didn't go away. I called my endo and after asking me several questions was told to go immediately to the emergency room. I ended up getting admitted with extremely low potassium levels, which was the cause of my swelling. I had an IV drip with potassium all weekend.

I think that episode was enough to convince everyone I was not doing well on all the medicines I was taking and something had to be done soon. Everything flew by pretty quickly from there. The following week, I met with the neurosurgeon to talk about the possibility of repeat transphenoidel surgery and its chances for success. I also met with my endo and her boss to talk about another option, bilateral adrenalectomy. After weighing all the pros and cons and doing some serious soul-searching, I decided on the adrenalectomy. I knew I'd be on lifelong steroid replacements and would always have to closely monitor my health, but I also knew I wanted to be cured. I did not want to take the chance of a second pituitary surgery being unsuccessful again and then possibly facing an adrenalectomy anyway. I didn't want the chance of the tumor growing back. I wanted these symptoms gone, for good. I knew with no adrenal glands, my body couldn't make cortisol and thus I would no longer suffer from the Cushing's symptoms. I knew by removing my adrenal glands I was indirectly solving my problem, in that I would still have the ACTH producing tumor supposedly in my pituitary gland. I knew there was the possibility the tumor could rapidly grow (Nelson's Syndrome) and I might have to get it removed at that time, but I was prepared to face it all. I just wanted these Cushing's symptoms gone forever.

On June 26, 2007, I met with the surgeon who would potentially be doing my adrenalectomy. Once again, I chose to have this surgery performed at Johns Hopkins because I was always very impressed by the skill and knowledge of their doctors. The doctor reiterated the risks of the surgery to me and also the consequences. I signed the consent forms and found out the following day my surgery was slated for that Friday. I could hardly believe it! I had wanted for so long, and it was finally happening. I had to go on a clear liquid diet for the two days before surgery and also do a "bowel cleansing". I never want to do that again! I did all the pre-op stuff and anxiously waited for Friday morning.

I arrived at the hospital and went into pre-op around 10:15 am. My family and fiancé all came in to wish me luck and I was wheeled off to the operating room. Next thing I knew I was waking up in recovery. I was told everything went fine; the doctor was able to remove both adrenal glands laparoscopically, in about 6 hours. I was taken to ICU for the first night and moved to a regular room for the next three days. I was definitely sore, but made myself get out of bed and walk around the next day after surgery. I had seven small incisions on my abdomen and that was it. I could hardly believe they could pull anything out of those small cuts.

After I got home, I continued to heal nicely. All of my blood work indicates a successful surgery (cortisol levels are zero w/o medicine). I saw physical changes immediately after surgery. I lost 10 pounds in the first two weeks and the puffiness in my face and neck has drastically been reduced. My bruising and high blood pressure has disappeared. My hair is starting to grow again and two days after I came home I got my first period in three years. I never thought I'd be happy to get my period, but I honestly cried. I was able to drop down to my maintenance dose of hydrocortisone (15 mgs daily) fairly quickly and easily with no real problems or scares.

It's now a little over two months since my surgery and I feel great for the most part. I have a small problem with swelling of my feel and ankles from time to time and I still get tired fairly easily, but that's the worst of it. I've started exercising again, and the soreness I feel after a good workout is a welcome feeling because I know my muscles are rebuilding again. I continue to lose weight without even really trying too hard, and feel confident I will eventually get back down to my pre-Cushing's weight. The weight isn't coming off as quick as I'd like it to, but slowly and surely the scales are going down. I know if I stick with it, I will reach my goal.

I truly feel Cushing's patients are some of the strongest people in the entire world. If we can conquer this disease, there is nothing we can't do if we just have faith and believe. I'd like to say a special thanks to all my wonderful friends and family who taught me just that. Special thanks to my wonderful fiancé who was by my side every step of the way. Also, to my angel mother who made me never give up and fought this disease for me even when I felt like I couldn't. The power of love really is a miracle in itself. For all of you still fighting out there don't give up. When you feel like hiding and giving in to this awful disease, just think about all those people who love you and are in your corner. You'll realize how lucky you are and you owe it to them to keep fighting. I am speaking from experience when I say it will get better. Don't give up and don't give in and when this is all over and you are looking back on it as I am, you will be a much better person for it.

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Pituitary Tumor Page 1)
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Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic Cushing's
In Memory of...

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