Instagram is a fantastic way of seeing other Cushings patients’ stories. When I first had my op I scoured the internet trying to find others like me. I have been in contact with Brynn, 32, from Buffalo, New York, who suffered from Cushings and had pituitary surgery in June 2018. Her story and transformation photos are below.
I was a “lucky one”. I’m guessing I only had Cushings 3-4 years before being diagnosed. I had always fluctuated with my weight my whole life. But after I had my second child, something was different. No matter how well I ate, or how much I worked out, the best I could do was maintain. I could not lose. I was also no longer able to sleep more then a few hours a night. My skin was constantly breaking out. For years I would mention this when I was at the doctor. So for years they checked my thyroid, offered diet pills, nutritionists and personal trainers. I tried it all. My thyroid was always “perfect”. It was one day at my primary doctor when the PA started going down the list of all the things I could try to do to loose weight. I politely stopped her and told her I have tried everything. I told her something was different, I just didn’t feel like myself anymore. She said we may as well check your cortisol levels. And so it began…After having slightly elevated cortisol levels I was referred to an endocrinologist. A friend of mine who is a nurse had told me to look up cushings disease. She said “it sounds like you”. It sure did. When I went to my first appointment at the endocrinologist I mentioned cushings and they said “no one has cushings. It is so rare.” I was checked for PSOD along with other things. As everything else was getting ruled out. I could tell the doctor was thinking it was possible I had cushings disease. For months I did urine tests and saliva tests and countless amounts of bloodwork. I did in-fact have Cushings disease. Next step, find the tumor. After having an MRI the doctors were able to find a tiny tumor on my pituitary. After that it all seemed to go pretty quickly. Lots of doctors appointments. Then the day was here. I went in early on a Tuesday morning. I fully trusted my surgeon, and was ready to get the show on the road. After a four hour surgery, they had felt the successfully had been able to remove the tumor. I did have to have the lumbar drain put in. Which I was hoping I wouldn’t. I spent 2 days in the ICU and 7 days total in the hospital. I had DI for just one day as expected. The part that wasn’t expected, I had a constant headache that never let up unless I was laying flat. My last day in the hospital they realized I most likely needed a blood patch. I had that done, and started feeling some relief. So now I’m home… everything should be great, right? This is truly when it all started. The first months at home were for sure the most difficult I have ever experienced and more then I could have prepared myself for. To say the recovery is slow is a huge understatement. When I reached 6 months post op I can say I had a day or two where I didn’t feel awful. I am now 8months post op, and having mostly fair days and even some good days! I had an allergic reaction, which put me in the hospital 2 days and on a high dose of steroids. I am now weening back to my normal dose. That was an eye opener for me. Things I normally would have been able to fight off, I can’t. Being patient with this recovery is an on going lesson for me. I am still hopeful I’ll be able to be off steroids completely one day. But at this point just taking it one day at a time.
Brynn can be found on Instagram under the handle @brynnalexa13