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Jennifer's Story...

My battle with Cushing's is by far not as long or as severe as some on here. The evil thing about Cushing's is it creeps up on you...you THINK something's not right but the change is too subtle to really tell.

I started seeing doctors for this in 2000. I was exercising at least 5 times a week, 2 hours a day, writing everything down and recording what I ate in an effort to lose weight I never lost after having my son in 1999. After several months of this exercise and only losing about 10 pounds, I took all my documentation to the doctor. He thought maybe I was insulin resistant and put me on Glucophage. I dropped 40 pounds on this, and life was good. For awhile.

I started to get severe headaches-they felt like ice cream headaches- and they were so painful I literally couldn't function. They only lasted a few minutes, but afterwards I was dizzy and felt like I couldn't hold my head up. The doctor ordered a CAT scan. It was normal. So begins the nightmare.

Soon I couldn't exercise anymore because that brought the headaches on. Of course when I stopped exercising, I gained weight. I thought this was normal. Then I noticed my hair was falling out and I had acne...I'd never had acne before. The doctor told me it was PCOS. He did an ultrasound of my ovaries. Clear. Back to the drawing board.

I had developed stretch marks with my pregnancy, so I didn't think it odd that they were still there. What I DIDN'T notice was that there were more. And I started to grow hair in funny places. My back hurt all the time. And ever so slowly-so slowly I didn't notice-I got weaker.

One doctor told me to take a walk, that it was all in my head. What an apt saying. It was then that I really started to believe I was making this all up.

In 2003, I was told I had spondylolisthesis. Two of my lumbar vertebrae had broken and my spine was slipping into my abdominal cavity. Good! Found a reason for the back pain, and possibly the headaches. In December, 2003, I had a 2 level spinal fusion, with double discectomy. After an extremely painful recovery, the symptoms were still there.

I kept going back to the doctor until he finally ordered an MRI. There it was...a 3mm tumor on my pituitary gland. I was convinced this was the source of my problems. The doctor thought so too, but didn't plan to do anything about it. I pushed for a referral to Mayo, and got it.

Mayo was no help. After a 2 week battery of tests I was told I "may" have Cushing's, but my urine free cortisol was actually LOW. So they weren't going to do anything.

Where do I go from here? Mayo is supposed to be the be-all end-all for medical problems. My mom turned to the internet and found my savior, Dr. Ludlam.

I emailed him about my symptoms and he was convinced I had Cushing's and wanted me to come out to Portland for tests. I had a petrosal sinus sampling done (among many other things), and my lowest ACTH level was in the 400s. My highest was in the 700s. So the tumor was going to come out. I had my first surgery 2 weeks later, in June, 2005.

The initial numbers after surgery were not good. I still had high ACTH and cortisol levels, but Dr. Delashaw (my neurosurgeon) was convinced he got it all. We were going to wait it out and see. They put me on hydrocortisone, which is standard procedure for Cushing's surgeries. That night I had such horrible muscle spasms, I was lying on the bed screaming for hours because I couldn't move. Chris Yedinak (my other savior) gradually increased my hydrocortisone levels until I had taken enough to stop the spasms. She was planning on sending me home on 30 mg 3 times a day...I went home at 60 mg 3 times a day. My weight skyrocketed.

Four months after the surgery I went back for a check-up. The tumor was still there. I still had high cortisol levels and I was gaining weight instead of losing it. So I went back in December, 2005, and January, 2006, for more and more tests. My second surgery was scheduled for February 13, 2006.

The good news: I no longer have Cushing's. The bad news: my pituitary was damaged during the second surgery and I now have to inject growth hormone for the rest of my life. (I also take levothyroxine). I came out of that surgery pretty beat up: I had a spinal fluid leak, so my nose was packed (not comfortable), and I also had diabetes insipidus. I have never been so thirsty in my life. I was drinking 1000 mL every 15 minutes. Luckily that went away after a few weeks on DDAVP and some potassium supplements to sheild my heart from any deficiencies.

I am now just short of a year after my second surgery. I still get very tired ( I am in physical therapy school), but I have lost 45 pounds without even trying and I am so grateful to Dr. Ludlam and especially to Chris, for helping to make my life normal.

I'm not quite there yet, but maybe someday.