
Originally Posted by
rohrer01
My dear scoli friends,
Like the title of my topic, it's official that my downward spiral is speeding up. I may not be strong enough to survive a surgery. I haven't heard from Dr. Folgeson's office yet. My guess is that he'll take one look at me and say the same thing. However, the surgery may be lifesaving IF I could tolerate it. I need it so that I can hopefully eat without pain. I've noticed that when I force myself to eat, not only does it hurt but my heart races as well. I have a muscle wasting disease, as you all know. My arms and legs have become very thin and atrophied and I weigh a whopping 108# on my 5'7" frame. I would actually be about 5'9 or 5'10" if not for the scoliosis. I was 5' 8-1/4" at my peak growth at age 15 before I began to shrink despite my scoliosis. I'm sure I must be less than 5'7" now because my scoliosis is worse.
I am weak and sometimes walking is an impossibility. My feet just won't come off of the floor and if I shuffle around too much I lose the ability to walk altogether.
I am bummed beyond belief. I feel like I'm going through the five stages of grief all over again. Right away I felt sad and I still am, but I'm getting angry, too. I want to live long enough to see AND enjoy all of my future grandchildren. I already can't do things with my seven y/o grandson. Life is so unfair. It's bad enough to have the scoliosis but to have this death sentence on top of it all is too much!
That's my update.
Rohrer01 signing out for now.
Hi...
So sorry that things continue to worsen. Life is truly not fair.
We often see patients who are truly too sick to undergo a long fusion, and occasionally find a way to do something small that can improve their quality of life. Maybe it's time to focus on trying to fix whatever is the most intolerable. There's still a relatively big risk that the surgery will actually make things worse by creating a new problem.
I think that, at least sometimes, the best thing we can do is to manage expectations. It's hard not to imagine that life could be so much better. I think you're probably already there. I hope you stop the downward slide, and hit a plateau soon.
--Linda
Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation