3 replies to this topic

[Bkizz]

I am not quite 2 years post injury and have already had 2 opperations for a syrinx that keeps coming back. I was originally diagnosed as a T2 complete in Sept 2009 when I had my accident. In March 2010 I noticed that the back of my left arm had limited feeling and I and didn't have normal temperature sensation; cold temps felt warm. My Dr. suggested I go to the ER and an MRI showed a syrinx. My neurosurgeon who did my original spinal reconstruction put in a shunt to drain the syrinx and a follow up MRI showed the syrinx had collapsed. Then, in February 2011 I started having aching/tingling/burning in my left arm. I called the neurosurgeon and had another MRI which showed another syrinx in my neck slightly higher than the one before. I ended up having a "shunt revision" surgery which showed the original shunt was clogged...so they put in another shunt above it.

At this point I still have full strength in both arms/hands but my left arm is constantly bugging me. I have aches and pains that come and go...and I still have occasional burning in my hand. I have considered taking Neurontin for these pains but I am afraid it might mask symptoms if my syrinx comes back.

My biggest fear is loosing function...and to top it off I am left handed. I feel like I live in constant fear...every abnormal sensation makes me think, "oh no, it's back." I am not a pessimistic person but I do want to be proactive. I guess I'm just trying to figure out what to do if the syrinx does come back. Do you think I should take Neurontin and try to push it out of my mind? Any advise would be appreciated. Thanks!!

[qbounce]

A syrinx can form post-SCI from the spindley scar tissue that attaches itself to the dura-the wall of the spinal cord, at the injury sight. This is called a tethered cord.

Look up Dr. Scott Falci of Craig Hospital in Colorado. He's only one of two doctors here in the US that does post-traumatic Tethered Cord operations.

He said that any pain that's already rooted from past loss may never be rectified, but this surgery is supposed to stop any further syrinx reformations.
You do however, run the risk of losing even more sensation/ function, so you have to do the math in considering all the pro's and cons.

I would think you're always better off staying away from any further surgeries unless it's absolutely mandatory.
If you don't have a syrinx at this point, I recommend rebuilding what you have through therapy and weight training and leave it at that.
But keep it in the back of your mind, if these sensations do get worse and your syrinx returns, there is an option.

[Bkizz]

qbounce, on 15 June 2011 - 03:23 PM, said:

A syrinx can form post-SCI from the spindley scar tissue that attaches itself to the dura-the wall of the spinal cord, at the injury sight. This is called a tethered cord.

Look up Dr. Scott Falci of Craig Hospital in Colorado. He's only one of two doctors here in the US that does post-traumatic Tethered Cord operations.

He said that any pain that's already rooted from past loss may never be rectified, but this surgery is supposed to stop any further syrinx reformations.
You do however, run the risk of losing even more sensation/ function, so you have to do the math in considering all the pro's and cons.

I would think you're always better off staying away from any further surgeries unless it's absolutely mandatory.
If you don't have a syrinx at this point, I recommend rebuilding what you have through therapy and weight training and leave it at that.
But keep it in the back of your mind, if these sensations do get worse and your syrinx returns, there is an option.

Thanks for the advice. I have heard of a tethered cord. I agree, I want to stay away from surgery if at all possible. I will do more research on that and hope I don't have to end up using it.

Does anyone have any insight on using Neurontin?

[Tetracyclone]

Your concern about neurontin is actually the easiest thing to deal with. Use it and find out if it helps you. If it does, use it 3 weeks out of 4, or some formula you find livable, and the off week will tell you if there are new sensations/symptoms. This would be a problem only if your dosage is pretty high. Symptoms will be more severe during that off week than they are currently- that is withdrawal from neurontin. Keep careful notes because memory is worthless for this task.

I vary my dosage sometimes and it is not that bad for me. My own doctor welco0mes my experimentation with dosage, as he does not have to fool with it, but he trusts me and I keep him well-informed.

Good luck.