Before Cushing’s

I am from Peru, South America and I am now living in Jackson, Mississippi. I was diagnosed with Cushing’s in 2005 when I was a 25 year old. I had just finished medical School in Lima, Peru.

I have suffered from migraines with an aura that included blurry vision since I was about 18yo. So when in August of 2005 I became temporarily blind in one eye, I thought a migraine was starting, but the headache never came. Biochemical tests, subsequent to an MRI showing a pituitary tumor, documented the diagnosis of “Cushing’s Disease”. I was really depressed by this diagnosis. I couldn’t explain why this was happening to me and thought it was the end of the world. In retrospect I had been gaining a lot of weight, felt really tired, got sick more often than usual, and was depressed. I always found a cause or excuse; I was eating more, I was doing too much, I needed to rest, I was having a difficult time… everything had a reasonable explanation. But the real explanation was Cushing’s.

After consulting several doctors and asking around, I discovered that there was not a surgeon in Peru that had much experience with the removal of pituitary tumors such as mine, so we made the decision to come to the United States to have surgery. I did not have International Insurance, so it was expensive. Luckily I found a really good doctor who was able to perform it based on my medical records from Peru and my family gave me a lot of moral and economical support. My fiancé, who is now my husband, and my Mom traveled with me. They were my biggest support. I know I could not have made it without them.

After my first surgery I developed a cerebral spinal fluid leak and diabetes insipidus (DI), but both complications resolved relatively quickly and I returned to Peru, where I was able to resume my work as a doctor in a month. I don’t remember my cortisol levels after surgery, but I only needed replacement for 4 months. At that time, that seemed wonderful, I was cured! …And I didn’t need any medicine.

With Cushing’s

MRIs and cortisol levels on regular follow ups were normal for 3 years. I was married and moved to the United States, to Mississippi, where my husband became a medical intern and I began to work. I skipped my checkup that year (the fourth one after my surgery) because I was still finding a doctor and getting used to living here. Unfortunately, at my next checkup my cortisol and ACTH levels were elevated. At this point I felt like my world was falling apart again, I didn’t want to go through all that again. I knew the Cushing’s was back. I had gained weight, was feeling tired and not sleeping well. It sounds silly, but I knew my Cushing’s was back because my purses started falling from my shoulder (because the hump was growing again). A negative salivary cortisol offered some hope, but the two separate urine collection tests were positive. The Cushing’s was definitively back. Even though I knew what was coming, it wasn’t until I had the MRI and the appointment with the Neurosurgeon that I really accepted it. By accepting it, I mean that I cried day and night, even at work. Luckily I had my husband by my side all of the time. He was the one who sustained me, helped me make decisions. He was and still is my biggest support. I know I could not have made it without him. I called my Mom and told her that I was having surgery again and she came all the way from Peru to take care of me. I really feel lucky to have all of the family support that I have.

The surgery went very well. After the surgery I felt great, I didn’t have any headache or nausea like the first time, my cortisol was very low and I had DI, which was one of the complications, but it resolved in a couple of days.

I stayed for a week in the hospital and when I went home, I had good days and bad days. I was feeling very weak and some days I did have headaches and nausea, but the worse thing was feeling that I was not able to do the things I used to do before, like taking a shower. I could not squeeze the shampoo bottles. I felt really frustrated because of that. I couldn’t walk more than a block without feeling dizzy, I was wondering if I would ever feel NORMAL again. My body was so used to the high levels of corticoids and it took a while until I started feeling ok. I decided to go to work 2 weeks after my surgery and take it easy. The first day after 4 hours I felt really tired and lightheaded, so I went home. The next day I made it through all day and after that I pretty much could work. I still didn’t feel the same. I was so used to multitasking (I love doing more than one thing at the same time) and now I was not able to do it. I struggled cognitively to resolve easy problems, which made me feel useless. Finishing things took me longer, and I couldn’t do many things at the same time. This has improved over time.

Today I feel pretty much NORMAL, I can’t concentrate or learn as before but I am back to work. I can walk 4 to 5 miles without any problems, clean the house, and do some gardening. My cortisol levels are still low and I am still taking corticoid replacement. I can tell when I forget it, because I start feeling tired, nauseated or just different. Overall I am glad to feel the way I do and to be doing things that I enjoy.

If I can be of help to anyone, please let me know! Spanish is my first language, so feel free to write me in either Spanish or English!

Member:101465
Newsletter: Spring, 2012
State: Mississippi