The last two weeks have seen much of the same. I'm starting to lose the ability to walk again. As of last night, I'm lurching when I walk, and am losing bowel control off and on.
If there is any good news to take away from these last two to three weeks, I am officially disabled. I received notification from Social Security on the day that I came home from the hospital a couple of weeks ago, that my latest appeal was approved. Medicare goes into effect in October. My first Social Security check should be in the mail next month. This is from my initial claim regarding my Tourette's Syndrome and PTSD. I'm approved through May of 2015. Once I get this current situation figured out, I should be golden for the rest of my life.
Speaking of my current condition, I saw a spinal surgeon on Wednesday. He first read the reports from my spinal MRIs and said that I should be helped with pain medication and therapy. Then he pulled up the images. The first word out of his mouth was "Jesus". He said the report was "highly underestimated". There is a disc herniation near my tail bone that is almost pressing on my spinal cord. He immediately ordered an epidural for the pain to be administered at a local hospital. (It has to be approved by insurance first, so I probably won't have it until mid next week.) He also ordered a standing MRI. There is a possibility that the disc is pushing out further while I am sitting or standing than when I am laying down. If so, it could be pinching my spinal cord or a nerve that controls my leg or bowel functions.
About 3 weeks ago, I had an SSEP. It's a test to measure how quickly your nerves pass a signal from a point in your body to your brain and back. When you have it done on your legs, an electrode is placed on your knee. When the shock goes to your knee, your big toe is supposed to twitch.
The first test I had, they couldn't get the big toe on my right foot to twitch. My neurologist ordered a second test, thinking the technician did it incorrectly. They didn't.
I had it done a second time last week. This time around, not only did the big toe on EITHER toe not twitch, but I couldn't feel the shock at all in either of my knees. My neurologist called me Wednesday night to go over the results of the second test. He said that I had some "latency issues". When I pressed him for some additional details, he said, "In simple terms, your brain never got the signal. It reached your back and stopped. Basically, your brain doesn't know that your legs exist." Two weeks prior, I had normal readings on my left leg. Now, they can't get a reading at all from my left leg.
He was going to call my new spinal doctor at home and recommend spinal surgery. As far as a time frame goes...I don't know. Hopefully, the MRI will provide some answers. If not, he may need to open me up, and just start looking around. Needless to say at this point, I have some serious neurological shit going on.
I am stressed out beyond imagination. At the moment, I am visiting friends in Tucson. I don't want to deal with this. I don't know how to deal with this.
Right now, I don't want to write anymore. Not for a while, at least. I just don't have the energy for it. Seems more and more like there are 19 things I want to write about, but I only have it in me to do one or two quick little blurbs. It does nothing but frustrate me, and that's the last thing I need right now.
If there is any good news to take away from these last two to three weeks, I am officially disabled. I received notification from Social Security on the day that I came home from the hospital a couple of weeks ago, that my latest appeal was approved. Medicare goes into effect in October. My first Social Security check should be in the mail next month. This is from my initial claim regarding my Tourette's Syndrome and PTSD. I'm approved through May of 2015. Once I get this current situation figured out, I should be golden for the rest of my life.
Speaking of my current condition, I saw a spinal surgeon on Wednesday. He first read the reports from my spinal MRIs and said that I should be helped with pain medication and therapy. Then he pulled up the images. The first word out of his mouth was "Jesus". He said the report was "highly underestimated". There is a disc herniation near my tail bone that is almost pressing on my spinal cord. He immediately ordered an epidural for the pain to be administered at a local hospital. (It has to be approved by insurance first, so I probably won't have it until mid next week.) He also ordered a standing MRI. There is a possibility that the disc is pushing out further while I am sitting or standing than when I am laying down. If so, it could be pinching my spinal cord or a nerve that controls my leg or bowel functions.
About 3 weeks ago, I had an SSEP. It's a test to measure how quickly your nerves pass a signal from a point in your body to your brain and back. When you have it done on your legs, an electrode is placed on your knee. When the shock goes to your knee, your big toe is supposed to twitch.
The first test I had, they couldn't get the big toe on my right foot to twitch. My neurologist ordered a second test, thinking the technician did it incorrectly. They didn't.
I had it done a second time last week. This time around, not only did the big toe on EITHER toe not twitch, but I couldn't feel the shock at all in either of my knees. My neurologist called me Wednesday night to go over the results of the second test. He said that I had some "latency issues". When I pressed him for some additional details, he said, "In simple terms, your brain never got the signal. It reached your back and stopped. Basically, your brain doesn't know that your legs exist." Two weeks prior, I had normal readings on my left leg. Now, they can't get a reading at all from my left leg.
He was going to call my new spinal doctor at home and recommend spinal surgery. As far as a time frame goes...I don't know. Hopefully, the MRI will provide some answers. If not, he may need to open me up, and just start looking around. Needless to say at this point, I have some serious neurological shit going on.
I am stressed out beyond imagination. At the moment, I am visiting friends in Tucson. I don't want to deal with this. I don't know how to deal with this.
Right now, I don't want to write anymore. Not for a while, at least. I just don't have the energy for it. Seems more and more like there are 19 things I want to write about, but I only have it in me to do one or two quick little blurbs. It does nothing but frustrate me, and that's the last thing I need right now.
3 comments:
(((HUG))) for you, Adam. The reality of this has got to be immensely frustrating. As an observer though, I read in some cause to hope here: your spinal surgeon has identified what sounds like it might be a legitimate cause for your weakness/collapsing and your loss of control. It sounds like it *might* be fixable. That would sure beat the hell out of Lou Gehrig's disease, wouldn't it?
I worry about you, and like being able to get updates. Maybe you could consider a vlog. That would eliminate a lot of the typing, and you'd still be able to have a creative outlet while you're going through all this.
Hang in there, brother. (I mean that in the good way, not in the, "Brother Twitch, would you please read Galations 3:12-23?") (Whatever that scripture might even say--I have no idea.)
Jesus, Adam. I am so sorry. I can't even wrap my brain around what you are dealing with. Take care of yourself and do what you need to do. If blogging takes too much energy then by all means don't blog. There's always Facebook to keep folks updated.
Thinking of you Adam! Hope this is the beginning of getting it all figured out. Please try to keep us updated if you can!
Rachel
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