Wednesday, May 12, 2010

It really was all in my head...just not in my imagination....

"It's pretty irrefutable that you can help yourself. Somehow exercise can reawaken dormant pathways in the nervous system and cause small amounts of regeneration. Otherwise, there's no way to explain why, all of a sudden, five years after the injury, I was able to move my left index finger. And from there I've gone on to move my legs and my arms, and I've even recovered the use of my diaphragm. So, I just don't believe in ultimatums.

The sky is the limit. I'm not going to put a time line on it. I did have a time line before: walking by age 50. I remember telling some researchers I met: “Don't give me all the reasons why recovery won't happen. Let me be the fool on the hill who says, `Why can't we do this?'”"....Christopher Reeve

Today was the big day, Mayo clinic results. I have stressed over this for 3 weeks since the original tests were done. I apologize for not posting more of the original results, but as findings came in they were a bit scarier than I had expected and I needed to know what I was fully dealing with before I shared the information too far.

For those who have helped support me through the last few weeks, during which I was less than rational at times, thank you. To say I was scared of the possibilities of what could be wrong would be the understatement of the year, and I am truly blessed to have people around me who let me talk, cry, throw things at walls,  be unfocused and flighty and just be a nut case for a few weeks. Luckily all that worrying was wasted emotion, but I am OK with that, because the outcome is the best possibility.

OK so before the outcome, what the tests showed that I have wrestled with for the past few weeks. The major tests I had done were a series of MRI's (include a blood vessel study known as an MRI-V), a nerve conduction test and an EMG (which shows muscle electrical activity). The MRI's were the most telling and the most stressful. I saw the results right after they were done, but had to wait til today to talk to the neurologist and neurosurgeon to understand exactly what is going on.

The tests showed the expected, that there is major nerve root damage related to my arm and to my leg from the shunt pulling out. We knew this no biggie.

The first surprising finding, although it shouldn't have been surprising, it makes sense, is that during that same surgery I suffered a pretty significant stroke. Which accounts for the numbness, skin issues, lack of sweating, and other things on the entire right half of my body. The neurologist predicted it in the first 10 minutes we talked and the MRI proved her theory. Them finding this is frustrating for me, we should have known this when it happened, because then I might have recovered further, but it also fills in big holes and just makes it all make sense. So in that way I feel complete now.

The second surprise finding, which was the stress provoking one, was that half of my spinal cord (the right side) was not showing like it should on the MRI. There was less nerve tissue in spots and some of the function was decreased. There were lots of things this could be, some not so good (like MS). I walked into today knowing this could be a day where I heard something that could change my life forever.

I am ECSTATIC to say that didn't happen. Both the neurologist and the neurosurgeon think this is also old damage from the original surgery, probably another stroke within a vessel in the spinal column.  There is no sign of any progressive damage, my vascular system all looks great, so no need to worry about additional stroke risks. It was great news and I feel like the world lifted off my shoulders after hearing that.

So what does this have to do with the title and the Christopher Reeve quote. I went to Mayo to find an answer, are there changes going on. Is it even possible or am I imagining it. I thought my chance at that answer was gone when the EMG results from the 90's were gone. I had given up ever having it verified. I shouldn't have given up. When I met with the neurosurgeon this morning he emphatically stated he does believe that there is some recovery going on, what is called Latent Spinal Injury Recovery, that the new sensations I am feeling are NOT my imagination. When I asked how that was even possible he pointed out to that Christopher Reeve moved his hands 5 years after his injury and other parts after that, which I didn't know. And while my time frame is way outside of what he normally tells patients to expect, that it is happening and I need to not worry about why or if and just take it as far as I can. He definitely thinks that the strength/resistance training I have been doing since November is what is driving this. And both he and the neurologist not only suggested, but insisted I keep the trainer part of my life and continue to push to see if I can make any additional progress.

How do I feel about it all...truth I am not sure. Three different people asked me tonight if I was ok when they saw me. I thought I was, I am told them that I was, but realized maybe I wasn't once I started working out and seemed to be feeling more and more alone in a club full of people and with my trainer standing 5 feet away the whole time. I thought it was just exhaustion, but as tonight goes on I am realizing it is something more.

I am happy, I know that, I am relieved, I am grateful but part of me is angry also, incredibly angry. Angry at the surgeon who cared so little to find out what was wrong after the surgery went wrong, who wanted to run away from the situation as fast as he could and never stopped to find out what happened. I know being mad fixes nothing, I cant go back and change it all. But it angers me that he didn't give me the chance when it happened to have the therapies and treatments that would have given me back more of my functionality. I am angry that he got off scot free and I live like this every day. I am angry at myself that I am letting him rob me of the joy I should be feeling tonight. I should be on cloud 9 with the news I got today that I am making some progress, and once again I feel he is robbing me of that too.

I am heading to bed, I hope by the time I wake up in the morning the anger has subsided and I can truly enjoy the great gift I was given today and can look forward at the possibilities instead of backwards at the cause. Good night!

1 comment:

  1. Sometimes we have to go thru the anger, get it out of our system (though sometimes it always lingers in the back ground). Get mad, blow up, punch something (not me or Gui, lol). It is not robbing you of joy, it is one more step to go thru. If you hang on to it, then it robs you.

    I am so happy the news was good on the healing that you knew was taking place. Keep moving forward girl! Over the hills and thru the valleys that are part of life....proud of ya and so happy you are doing well.

    Kaye and the Crew