I am a T4/T1 complete Para and I get spasms but normally they are really not that bad. They have been getting worse the last three months and have been getting more arm pain on the T1 side. So I had a another MRI and my surgeon looked for a Syrinx up at my T4/T1 level and both him and I looked at it and it looked very good. As I have had two syrinx's since my Accident June 2008, the last one they put a shunt in to help drain it and that one was bad enough to increase my paralysis from a T4 to a T1 on my left side unfortunately. On top of more spasms I was also having some bladder problems. So i went home wondering why I am having these problems so I phoned my specialist and asked him to take a look at it to see what he thought of my MRI. He phoned me a couple days later telling me that my spine looked good up top where i was having the problems before but he also said it looks like my whole lower spine below the T4 level all the way down was full of spinal fluid. He said that this could be a big part of what is causing my problems, even though i am paralyzed above that level things can still be affected below the area where my spine was severed by extra pressure of the excess spinal fluid. I will have to email my surgeons secretary and ask him if he can look at the rest of the spine and give me his opinion on that as I am not sure if he really looked at the rest of the spine as we were mainly worried about my paralysis level climbing again above the T4/T1 level.
Anyway i have a question for others here on the Carecure forum, the SCI Nurses or the DR and wanted their opinion on what they have seen before that causes this or could cause continued non stop spasms. The last two nights when I lay down I had non stop spasms in my right side around the bottom of my rib cage stomach area. It would twitch or spasm almost every second anywhere from 4 to 40 times in a row. Then it would stop for 3-4 seconds then go again. It was worse last night it did that the whole night continued firing you could see my stomach moving on that side like a baby was kicking me inside! Then of course both morning I woke up with an insane knot in my upper right shoulder from those weird spasms as those muscles must be attached to that area. Now i really cant get a hold of any specialist now this time of year to ask and I am headed out on a 2 week cruise in 6 days from now and I am kind of worried. Has anyone every had this happen to them? What could cause this(probably a ton of stuff)? How does one typically treat this or help make it bearable? I do take 20mg of Baclofen 4 times a day I am not sure upping this is going to help much unless I start taking more at night which might help a bit. Anyway would like to here peoples feed back on this as I know this could be quite dangerous for me if it keeps firing forever. It does stop when I completely sit up in my wheelchair. Cramping in your shoulder from this continual firing of the spasm makes it very hard to get sleep, and sleep is what I am now lacking! Thoughts?