As my name states I am totally confused and overwhelmed.
My story is very long and at some point I'll post it in a blog.
I was diagnosed 5 years ago at age 60. Had never been sick a day in my life and hadn't been to a doctor in 15 years.
In 2008 I was walking across the living room, it was midnight, to put my grandson in my bed as he had fallen asleep on the sofa. I was instantly paralyzed from the neck down, hit the floor face down and laid there till someone heard me screaming for help 7 hours later. Two and a half months later I could walk with a walker and it's been a long road to be healthy.
While doing tests to see if they could find what caused this issue the discovered I CM and Syringomyelia. But there were other complications due to me laying for so many hours I had severe Rhabdomyolysis and when I arrived at the ER I heard them say I had about a hour to live if I hadn't been found. So I also couldn't move due to the problem.
Like so may others its been hell trying to get the right care.
Here's a timeline:
When diagnosed Neurosurgeon wanted to do surgery while I was paralyzed. Really! I said no.
Appointment with recommended Neurologist for some issues that were associated with the lasting effects of the Rhabdomyolysis. He didn't seem too concerned about the CM and he didn't even advise followup.
Two years ago I had balance issues and had all the tests to find the cause. None has been found but was recommended I see a Neurologist. I was lucky and found a wonderful doctor who was very familiar with CM and how to go about treatment. He was adamant that surgery should be avoided unless its absolutely necessary. I was having no symptoms at this point other than balance. He ordered MRI's and still felt the same way about no surgery. But suggested I see a Neurosurgeon for a second opinion which I did. Again lucky to find a wonderful doctor who agreed totally with Neurologist.
Then as luck would have it both doctors had to be replaced. One move out of area and the other decided not to take Medicare.
I found a Neurosurgeon who does this surgery and him and the hospital have a stellar reputation. But he unlike the first two is adamant. Surgery. Surgery right away. I was basically without symptoms...and certainly none that interfered with my life. I was not in pain, no headaches. So we've been keeping check on its progression and have a Spine and Brain MRI every 6 months. It has increased in size from the original five years ago. It was 2.2 and now as of March is 7.7.
Well I went for my 6 months checkup last Wednesday and he is insisting that I need this surgery now. Like that day. He talked like the surgery is not big deal, open the area and do what is needed, sew it back up, three days in the hospital and ship me home. I asked how long the recovery is and he said "were not talking about you having a tumor removed." Okay! He wanted a answer then and there and I would give him one. He's thinking is do it now, get it over with before it get's worse. I understand that but why do this very invasive surgery is I have no symptoms that are controlling my life. He said its past the time due to the size.
Well I've done five years of research and we all know the stories about having or not having the surgery. And I'm stuck with him as he's the only surgeon that does this surgery locally that takes my insurance.
I've read tons of our members stories and I'm so confused about how to managed this. I don't feel that the surgery is necessary at this point in time. He wants me back in three weeks with a answer.
Has anyone ever made the choice to not have the surgery even when it was recommended?
And input and advice is greatly appreciated. It seems the more you read the more confused you get.