Thats what my emotions have done this week. Up and down up and down Up and down.
On Wednesday I saw my neurosurgeon, he explained that the nerve damage is do to bruising from them trying to get the shunt tubing in a very cramped space, its small because there is so much scar tissue in the way.
He gave me options, not great ones since he wanted to put me back on the meds that did NOT work the first three times I couldn't even keep them down. He also said we could do serial spinal taps, I honestly wonder if he has ever had one, because that is not my idea of fun.
Then he gave me the option I liked the least, having a VP shunt put in, brain surgery is not my cup of tea right now.
I felt pretty good, he answered all of my questions, but basically said he was not comfortable with the idea of doing the VP shunt right now. I happen to agree, or at least I did til this morning, not I dont know what I want or even need anymore.
Then I proceeded to head to the pulmonologist office, she is absolutely the most amazing doctor I have EVER met in my entire life, and I have met LOTS and LOTS of doctors. She did throw me for a loop at first because she did not realize that I had not gotten the test results yet.
She starts by saying, As you know you have Severe Obstructive Sleep Apnea, Uhm, no I was unaware of that fact, lol.
Then she smiled and said well, you know now. She explained exactly what that meant. She explained that she wanted me to lose some weight, and even took the time to SET a goal with me and tell me how to go about actually LOSING the weight.
Then she talked to me about my breathing and getting winded. It was quite the learning experience. She is having me come back on March 17th for a Comprehensive Pulmonary Function Test, hooray (read all the sarcasm)
I then go back on March 21st for the second sleep study to get my CPAP regulated and ordered, maybe if I can breathe, I will start to feel better all over since I will be able To REALLY rest. I see her again on April 30th, she expects me to have lost 5-10 pounds....I know I can do it, and for the first time ever I feel like I am doing it for me and not to please someone else, God really blessed me with her.
Today, However, I went to see my neurologist...that appointment did NOT go as planned. I don't exactly know what I had planned, but I do know it did NOT happen that way, lol.
He basically asked me what Dr. Pieper had said. I told him what I had been told. He was NOT happy since I have had the symptoms since 1989 and my vision problems I did not even notice when they happened. Not to mention, since I had the Optic Nerve Sheath Fenestration done back in 1999 he said I may Never actually have the vision problems.
I thought that was cool, til he reminded me that if the meds did not work the first 3 tries, they aren't going to work now. He also reminded me that since the pressure was high in December with the shunt in, its just going to get worse without it.
Then he proceeded to remind me that this is no way to live, which I TOTALLY agree with, I am sick and tired of being sick and tired.
So, While he is letting me keep the opthamologist appointment on Thursday, he is thinking that we will probably get a second opinion on the shunt surgery, which means yet ANOTHER neurosurgeon and I am so not liking doctors offices at all anymore.
At least I can tell he cares and he isnt just going to STOP taking care of me when this is all said and done.
I do not know how I feel about all of this. On one hand, brain surgery is terrifying, on the other hand, I am barely functioning right now and basically I NEED to get better for DH and Bug, right now, they are taking care of me, that is not how it should be.