Today, I went to the Oregon Health & University to meet with the Neurosurgeon that my last neurosurgeon referred me to, Dr.Cetas. He was so awesome. He was very informative about my surgery, about my cyst, and much more. It helped inform me of the risks when going into surgery such as spinal fluid leaking into my brain, and diabetes insipidus which could be caused but some damaged to the stalk of my pituitary gland. It’s pretty cool because if I do have that happen, a pill can help reverse this and make everything back to normal. He did inform me that he was pretty certain it was a Rathke Cleft Cyst which is a cyst that is created inutero. While your pituitary is forming, some cells decide they don’t want to be with your pituitary gland and start their own party in that part of the brain. It is the most common cyst in the pituitary, but my case is complicated since of where the cyst is located. Also, because I have had two sinus surgeries which might cause the tissue they would use to seal the leak from my spinal fluid, might be damaged from past surgeries. But all in all Dr.Cetas was amazing and helped me feel very comfortable about this process.
I then had to get blood drawn for more testing, they would also compare these results to the tests I had done two weeks ago. I was being tested for my thyroid, prolactin, cortisol and a couple other hormones! For my cortisol test I had blood drawn, and then I was given a shot of artificial cortisol to see if my body would regulate the cortisol and if my levels would go up. Then I had blood drawn again 30 minutes later to be tested.
While waiting for my second doctors appointment with my endocrinologist, we got told by the nurses that the ENT doctor wanted to see me ASAP. So I went downstairs to their office and was placed in a room. I then met with the ENT who would partnering with my Neurosurgeon to preform my surgery in two months. He then looked at my past CT scans and looked inside my nose to look at my sinuses and see if they were healthy. In part of my surgery they actually use the sinus wall to help close the opening from your spinal fluid. My doctor then asked me some questions about my nose and past surgeries that I had on my sinuses. I then made a comment that I never had my septum corrected since I have a deviated septum and he said “that’s totally okay, I will make it perfect”. I totally thought he was joking but apparently he wasn’t. In this surgery they will break my septum to help create room for my neurosurgeon to operate in my brain through my sinuses.
Wait, it gets even worse. My ENT keeps asking me questions about how my sinuses feel and after he looked at my nose asked again how my nose felt. He said that my front sinuses do look inflamed and not as open as he would want them to be. He said that while he was already in my nose he could open up those sinuses and help drain them. It is not confirmed if this will happen or not yet but my surgeon did say when he went in, if they looked like they were infected and really inflamed he would operate on them as well. So this basically means a third sinus surgery. But MY NOSE IS GOING TO BE BROKEN GUYS. I’m not ready for this. This is the part I am most scared for, it’s going to hurt and be so uncomfortable.
After this appointment I then had my schedule appointment with my Endocrinologist. She was so cute, she kept holding her belly because she was pregnant. But anywho, she then talked to me about my blood tests I had done a couple weeks ago. She said my cortisol levels seem to be low so she was going to look and see what my test came back like because if my cortisol levels do not raise I could have an adrenal crisis where I could possibly die. This literally shocked me. Everything up until that moment was like “oh there are risks but not life threatening”. This is a big deal. So if my levels come back low again after getting the shot of cortisol, I will have to take pills to make sure my cortisol is up in the right amount.
My surgery will be early in the morning on June 20th so please keep me in your prayers. I will be in the hospital for about 4 days unless there is complications in surgery. I will be closely monitored to make sure my hormone level are all in the right spot, to make sure there is no leaking, or to make sure I don’t develop diabetes insipidus. It will be about a 2-4 week recovery for me but I will be able to resume normal activities in moderation during that recovery time.
I love you all so much. And I really appreciate all of your kind words as I go through this. It’s now getting real and scarier as time goes on, (ESPECIALLY WITH THIS DEVIATED SEPTUM THING) but I will get through!
I did start a go fund me account to help raise money to help pay for this surgery. Since this surgery is after Christopher and I get married my insurance will have to be extended and that costs a good amount as well as my deductible for this surgery. My doctor said this surgery normally ranges from 40,00-100,000 before insurance helps. My family and I will also be putting on a yard sale to help pay for this surgery so please keep your eye out on Facebook for that. Here is the link for my go fund me account, anything helps.
I hope you all have an amazing week and know if you are experiencing chronic pain, keep fighting for answers. No matter how scary the answer may seem, it’s worth it to know there is something wrong. ❤️