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Autumn's Story

I am 6 weeks post-op from pituitary surgery as of July 21, 2005. I am going at this backwards, but hope that by sharing my story, maybe the process will be easier, or maybe just a bit less frustrating and confusing for someone else.

I don’t really know how long I’ve had Cushing’s. It isn’t necessarily hereditary, but looking at family members, I think that in my case it may have been. My father had the round, red face, muscle fatigue, and depression. My younger brother, who from a young age had problems with his weight, concentration, etc. also has many of the characteristic symptoms of Cushing’s. My mother and many of her female relatives have a buffalo hump, and have just assumed it was an odd thing that “ran in the family.” It is my opinion that all these things combined made me more susceptible, and therefore, I found myself where I am today.

Looking back, I can now see that the symptoms began a long time ago. During my teenage years and through my early 20’s I had bouts of depression, but nothing that I thought was more than average. At the age of 18, I saw an OBGYN to begin a regular regimen of yearly visits. During this first visit, I explained to the Dr. that I had an irregular menstrual cycle. He said that it was just because I was a physically active person and it was nothing to be concerned about. When I was 21, I ended up in the hospital with an extreme headache and loss of vision. I was in the hospital for a few days. I had CAT scans and MRI’s, and lots of test done. There were “plaques” noted in my brain tissue, and the doctors suggested that maybe I had MS, but I was never diagnosed. In my mid 20’s I began to have anxiety attacks and my ability to deal with stress seemed to diminish. I had always prided myself in coping with stress in a pretty effective manner, but as I got older, stress would bring on physical illness, and fatigue. My body would just call it quits if it couldn’t handle the stress I was dealing with.

In the fall of 2002, I went in for my yearly exam and expressed my concern to my OBGYN about weight gain. It seemed that I was gaining weight, despite a healthy diet and exercise. He ordered blood work to check my thyroid at my request since my brother was being treated for thyroid problems and has been since a very young age. The blood work came back within a normal range and so no further tests were requested. He suggested a LOW-CARB diet. I followed the diet religiously for 6 months. I lost approximately 12 pounds during this time. In April of 2003, my father suddenly passed away. The day before his funeral, I was admitted to the hospital with a kidney stone. My LOW-CARB diet had produced high levels of protein and my system, despite drinking lots of water, was unable to process the protein correctly. That was the end of the LOW-CARB diet.

My acute symptoms began in the spring of 2004. We had just moved to the Omaha area. At that time, I was depressed, and very stressed out at work. In general I felt bad and had very little energy for anything. I would cry at the drop of a hat and my mood swings were awful. I could freak out and have a mini emotional breakdown over the smallest thing, and then be ok minutes later. I had no control of it. At times I would feel it coming on, watch myself as it happened and still not be able to control my emotions. It was time for my yearly check-up so I found a new OBGYN and made an appointment. I explained some of the symptoms I was having, including my concern about the weight gain. As seems to be the norm, I was told that loosing weight would help my health. That of course only added to my stress and depression, since I wasn’t eating poorly. As a matter of fact, at the time, I was on Weight Watchers trying to loose weight, and still found I was gaining. During this appointment, the OBGYN told me that I had endometriosis, and needed to have surgery right away. Not being pleased with this Doctor, I began a search for another one, hoping for a more logical diagnosis or at least a second opinion. It took me a couple months, but I saw another doctor and he too seemed to think that I was fine.

The fall of 2004 was awful. I felt terrible. I couldn’t sleep at night, I had intense lower back pain, head aches, bad acid reflux, and I was gaining about 20 pounds a month. I was exhausted and sad, and feeling terrible. I kept seeing my doctor and each time he would say that there was nothing wrong. Most of the time my doctor looked at me like I was crazy or making up the symptoms since none of them seemed to be related and were in most doctor's opinions, quite random. I would leave the doctor’s office each time feeling belittled, stupid, and crazy. I started to think that it was all in my head, but the “laundry list” of symptoms continued to grow and become more difficult to deal with. In December, I returned to the doctor as the pain in my lower back was almost too much to tolerate, and my stomach was growing so quickly that I was able watch the painful stretch marks pop around my stomach on a daily basis. I was told that I had PCOS, (PolyCysticOvarianSyndrome) and was prescribed ACTOS. We were so hopeful that the diagnosis was correct and that my health would improve. Sadly, that was not the case. My menstrual cycle did not regulate. I continued to have “whiskers” appear on my chin. I seemed to be retaining a lot of water. I continued to get more stretch marks. I had a fever that would come and go. In January, I woke up one morning and didn’t even recognize myself in the mirror. My face was so red and round and my neck had almost totally disappeared. It was awful! I had gained over 60 pounds in four months. I returned to the doctor and he told me that I had high blood pressure and that I had to get it under control quickly. Of course, many of the suggestions that he made such as cutting out foods high in saturated fat and salt, were things that we already did. I don’t think that he believed me, and was at a loss for any other suggestions when I returned again and my blood pressure was just as high despite following his instructions. During this time, I started having a few more strange symptoms. I started having dizzy spells at work. I had dry mouth. My left arm would tingle and go numb. I was having headaches. I was unable to do anything but sleep and work. I was always exhausted. It was only 3 months into the year and I had already used all my sick days and a large chunk of my vacation time due to illness. My doctor was at a loss and I was not getting any better.

April 27th was the pivotal day for me. I was at work and I began to have trouble breathing. Suddenly all the strange symptoms from the past couple months seemed to be hitting me all at once. I thought I was having a heart attack. A co-worked rushed me to an emergency room. My blood pressure was high, my potassium was low, and the attending physician said that I had severe edema. But fortunately, it wasn’t a heart attack. I was released on the understanding that I would see my doctor within 24 hours for additional tests. I was glad to be released, but disheartened that, once again, we seemed to be back to square one. I saw my GP the next day and he ordered some blood work to check standard thyroid levels, since I kept insisting that it might be worth looking into since my brother took thyroid medication. Once again the tests came back and all the levels were within a “normal” range. However, to cover all bases, he referred me to an endocrinologist.

A week later, sitting in a paper gown, on an examination table, my new endocrinologist walked into the room, took one look at me and said, “I know what’s wrong with you!” What was supposed to be a consultation turned into a two-hour visit during which, a multitude of tests were scheduled. Among these was of course the famous “24 hour Urine test.” If we had a dollar for every vile of blood and every urine test that we’ve done, we would all be rich! The first test results came back and my ACTH was 63, and my Cortisol was 144.2. Within the week, my health took a turn for the worse. My edema was so bad that my skin started splitting. I was becoming very forgetful. My hair was falling out. I had a rash on my arms. I lost my sense of taste. The inside of my mouth began peeling. My muscles would give and I would fall. My skin was so thin that a slight bump made a huge bruise or even split my skin open. At times, for no reason, I would step down and it would feel like the bones in my feet or legs were shattering. One morning I woke up and could not focus my eyes. It was as if I was looking through running water. I of course panicked. I didn’t want to loose my vision. Because of the rapid decline of my health, my endocrinologist scheduled a MRI and an appointment with a neurosurgeon right away. The MRI showed a pituitary adenoma measuring 5mm. The neurosurgeon discussed options and his recommendations for surgery. Additionally, he sent me to an eye doctor. The results showed that there was no severe nerve damage in my eyes, but muscle stain caused by the severe edema.

My surgery was scheduled for June 10th, 2005. We were very anxious and nervous about the whole thing. The surgery went well. There was of course my neurosurgeon and also an ear, nose, throat doctor in the operating room. There was an incision made in my upper lip just below my nose that allowed direct access to my pituitary gland. There was also an incision made in my abdomen to get fatty tissue. The fatty tissue was used to pack around the pituitary incision to prevent spinal seepage. The surgery lasted just over 2 hours. My hospital stay was five nights, including the night of the surgery. My recovery has not been easy, and definitely not as fast as I would like, but I’m learning some tricks along the way. I’m anxious and hopeful for my body to heal quickly. I feel very lucky that once diagnosed, the process moved quickly. I’ve have a wonderful support team. It hasn’t been easy for them. Even now I am very limited in what I can and can’t do. My eyesight has yet to return, but I am sure that as the edema decreases, my vision will return. I’ve tried to keep track of symptoms and feeling and what I’ve gone through in hopes that maybe I can offer something to someone else that is going through this. I had a lot of questions, and there really wasn’t anyone to ask. I hope that if you are reading this and you have questions or concerns you feel free to ask. I would be happy to share anything that I may have learned along the way, or just lend a hearing ear.

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