Oddly, I wasn't even anxious the morning I uploaded my scans and history. I had thought about brain surgery so much over the course of six months, especially the last three, that I had nearly come to peace with the decision to have it. I had yet to hear of an individual that had been told "no surgery" by Spetzler. I was prepared with a million questions about the actual surgery, possible deficits I could most likely expect due to the specific location of my CM, and discuss rehabilitation procedures and facilities in Arizona.
But instead I received this letter.
I was in shock. The world stopped turning for a minute and my mind just blanked. I handed the iPad to Patrick and had him read it. I just stared at him as he did, my mind void of thought. He finished and said, "So, what do you think?" I couldn't answer him. I tried to speak and my voice quivered. He gave me a hug and I nuzzled my head in to his chest and just cried. A good hard cry for three minutes and just like that I switched a button, stopped crying, and was overwhelmed with three main questions that just kept repeating over and over again in my head.
Why didn't Spetzler review it? Why did they say no to me, but yes to everyone else? Does that mean I am inoperable or too sick to be fixed?
I couldn't know the answer to these questions until I contacted them. It turns out Spetzler did review it and this doctor was just responsible for relaying the report. And as my letter said, the sole reason for the recommendation was because my CM is not near the surface making it risky to remove. And considering how well I have recovered they would rather watch and wait.
I have no idea why I cried when I read it. I am not sure if I was disappointed or relieved. Was I disappointed that my CM was going to still be in my head leaving me essentially stuck waiting for it to bleed again? I am so tired of waking up every morning and having the first thought that pops in to my head be, "Is today the day?" Was I relieved that I wasn't going to have to go through this insanely risky and completely life changing surgery? I had already began to figure out when I would like to have it, who would go to Arizona, where we would stay, and who would care for the girls.
Or had I just been so overwhelmed with everything that it finally just came pouring out?
I honestly have no answer to those questions. The only thing I know is that I am so tired of thinking about it. I also know that I want to move forward with life. Sometimes that is easier said than done. It is really difficult at this point to think about anything in the future because my mind instantly begins my thought or follows it with, "if I don't bleed again." But I also refuse to let me stroke govern my life so I try my hardest to ignore those thoughts.
If nothing else, at least I know now. The best surgeons in the US have told me not to have surgery. I am definitely going to listen to them.
So what do I do now?
I pray. I pray nearly every minute of every day. I pray about everything.
I hope He is listening to me.
Aww I am so sorry this was hard for you to read Jamie.However, If this can be of any encouragement to you, I asked Dr.Spetzler's nurses and assistant when does he say No to patients. The answer was basically "He says no to the patients he feels are less likely to lose quality of life or get deficits from the CM as opposed to surgery. He says yes to people that had recurring bleeds, and I have no clue how he knows, but his numbers for me were 99% chance of bleeding again, in the next 5 years, and no way to tell how devastating it was going to be. My CM was very active and leeking blood constantly, having me completely miserable all the time with lots and lots of unpleasant symptoms. I think you should see this letter as a huge encouragement, that he feels you do not need this risky surgery!! Please dont see it as "you cant be fix" because trust me, if he saw that you needed that fix right now, he would of said yes. His "no" is basically "You dont need any fixing at this time, you are doing well!! " :) I know it sucks and I so wish he could say that you will never bleed again! I do know a person that had a brainstem bleed 24 years ago and NEVER bled again! I know there are others! Our group is for people who had the surgery, so of course that can make you feel like you cant be fixed and I know that feels so awful because I was there once. I think its incredible that your CM has less chance to bleed than the surgery causing you deficits! Remember that this 7-10% a year is going to decrease every year that you do not bleed! My chance of deficits from surgery were 80% and bleed 99%. it was a hard choice despite the obvious simple because "what if I have another 3 years of "normal" life because I become disabled.. do i really want to become disabled prematurely? When I started my blog, I thought for SURE that it was going to be filled with pictures of me in wheelchair, learning a new life. My deficits are not pleasant, but they are NO where near what I expected! I have high hopes for you my dear friend. God is amazing and he will not let you down.
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