And It's About Time There Was Some Support For Cushing's!
After a seeing about 5 doctors through my HMO about my cushings symptoms I began to feel like I was a hypochondriac.
I couldn't stand how I was feeling but I learned to tolerate it for 5 years. The only thing I could not tolerate was the hair growth on my face so I went to get laser hair removal and the dermatologist said I needed to see an endo before geting my hair removed. She gave me the endos name and the rest is history.
I got blood and urine tests done and finally an MRI which showed the adenoma on my pituitary gland. I had surgery a week and a half ago and am now on my way to recovery.
The one thing I learned through the whole process is to never second guess yourself, second guess the doctors. You know your body better than they do.
I want to share a little bit of my story with you as well (peanut shell version).
You know me from going to OHSU, but i started here in San Diego in August '04 after 8 years of bad docs telling me I was fine. Once I saw San Diego's best docs I started the testing process while trying to complete my senior year of university. Incomplete as it was, I did not know what I was doing and did not come armed with info since I had not found this site yet.
I had my MRI it showed tumor and I was scheduled for surgery Dec. 15, '05. I went and had my preop MRI that was supposed to be put on an optical disk for the navigation system and I got a call the morning of surgery to rush in and get another MRI because the tech screwed mine up. I drove over there like a bat out of hell and my surgeon met me at the MRI center and told me my tumor didnt show and surgery was canceled. Oh how terrible last Christmas was! More tests and an IPSS was scheduled. All the while I had my HMO tell me I did not need surgery and they even went to the extent of having the first neuro/hack I saw, call my mom and scare her about the surgery and then wanted me to give him a second chance and let him operate.
I had the tests, had the surgery in February and was laid up for a good two months and tried to keep up with class to graduate in May. I thought I was cured, the docs said I was cured, so I was cured! Ya?! When I returned home from the hospital, I found this site and started asking questions. Unfortunately I didn't get the answers I wanted; however, I did get a lot of the encouragement I needed.
My cortisol levels kept going up, up, up as the weeks went on, but never sky high. Again the doctors were optimistic about a cure so I tried to follow suit. Mind over matter. I was told I needed to just give it time and I would notice a difference. My weight was supposed to come off and my face wasn't supposed to look like a puff ball and I was supposed to have more energy. Nope none of that happened. I knew I wasn't cured, but what was I going to do about it when my great doctors here didn't know what to do?
In May I emailed Dr. Ludlam with a comprehensive list of my labs and he said he would like to see me. He said everything was going to be harder because I already had a pit. surgery and there would be a lot of testing involved. I was ready. I did what was necessary to get a referal and made arrangements to go to Portland.
I went out for the 5 day testing and at the end it was clear I still had cushings. (180 UFC, 20 and 14 cortisol at midnight, 28 random cortisol, 10 salivary-all with a debulked tumor) The tests were good but he wanted to see if I could catch another high cycle. I didnt think it would be too hard and neither did he. WRONG. I peed and spit and gave blood from August until October and got nothing higher. All test were just slightly elevated but nothing to make me a shoe-in.
Out to Portland I went in October for a modified 5 days of testing. It was the 32 hour blood draw that made my case. It was clear that my diurnal rhythm was off and my cortisol was spiking at odd hours. No wonder I could not sleep until 4am every night!
The next step was CSS (cavernous sinus sampling). The tumor was up there on the left.
November 17th, 2005 was surgery day. Delashaw was the man who was committed to getting the bugger out.
In and out--at least that is how it felt to me. Sugery was a success! 48 hours after surgery they withheld all steroid replacements and I crashed HARD! Hallucinations, sweating, crying, headache. I was withdrawing from steroids...this was the best worst feeling I had ever felt. I did not experience this after my first surgery, so this MUST mean I am cured.
I remember getting the call Monday morning from Dr Ludlam.
"Are you ready Jaimie?" he asked.
"Yes, I'm lying down so shoot."
"2, 1, 1, 1! Those are GREAT numbers. It looks like a cure," he said with elation. "You can have your hydrocortisone now."
I could not have been happier to get those results AND to get some hydrocortisone back in my system. I wanted to pop it like candy after crashing a second time!
40, 40, 40. I needed 120mgs a day of replacements for a good couple weeks before my body would allow me to start tapering.
Now, going over 5 weeks post op I am doing very well. I just started 60 mgs/day of hydrocortisone replacements and am feeling it. It is all a part of the weaning process. Muscle aches, headaches and fatigue are all normal. I started physical therapy and LOVE it. I would say it is one of the best things I have chosen to do as a part of my recovery. Cushings does a number on our joints and muscles and I want to make sure I rebuild them properly.
Yesterday I rode on the bike for 30 minutes and then did my muscle strengthening stretches. How good it feels to move and feel sore. Perhaps I am a glutton for pain, but it makes me feel so alive!
I look forward to updating again soon with more positive news.