Syrinx Surgery

[Van Quad]

What a week! Last Wednesday I got a really sore neck on the right side and it traveled down into my shoulder and my arm. The most worrisome part was that although the sore neck is gone, my arm lost 75% of its strength overnight. I tracked down Dr. Krassioukov, my physiatrist who was in China at the time, and his advice was to get right into Emergency. All day Thursday I waited to see a doctor and get 'admitted' to the Spine Ward. The MRI was Friday, and I had a CT scan on Monday.
Yesterday I saw the surgeon and he informed me that my formerly stable syrinx has started to get larger and damage nerves, thus the shoulder pain. Scary stuff! It had been stable since it was discovered in 1988 Dr. Charles Tator when I was living in Toronto.
Today I'm heading for the hospital and Thursday I get a duraplasty. I've been reading as much as I could on tethered cords and duraplasty surgeries on CareCure. Sounds like a crapshoot where you're doomed if you do and doomed if you don't.

Through some good luck and good connections I'm managing to get surgery within a week but now I feel like I'm rushing things. Anybody with experience have any advice?

[canuck]

Ouch, best of luck.

[Bonnette]

I don't have any knowledge or advice, but I just want to wish you a very successful surgery, with genuinely helpful results - whether you have it within a week, or later.

[Van Quad]

Hey, thank you both

[Scaper1]

Best wishes Terry!

[LindaT]

Oh no-sorry for the bad news Terry. I'll be thinking of you.
Please keep us posted.

[thehipcrip]

When something happens to you, VQ, it happens BIG. That's awful lot to go through, let alone in such a short time. Scary stuff.

I have a syrinx in my brain stem, and what's left of my cervical cord is stretched taut, rests against the posterior of my spinal column and is tethered to the dura in multiple places. A neurosurgeon once recommended that I have a de-tethering and a duraplasty. I decided against it -- way too many things that could go wrong with no guarantee I'd see much benefit for reasons that are unique to me [extremely thin cord, huge chance that the incision and dura wouldn't close because I'd already been opened up so many times and had radiation plus an external 'trap flap' duraplasty] and because the problems had existed for so long already.

However, I think you've got a good chance to benefit from this, and the faster you do it, the better. With all this happening so quickly, it's very likely that the nerve damage that caused you to lose strength in your arm isn't yet permanent. Decompressing the cord by detethering [which will hopefully collapse the syrinx completely] and doing a duraplasty [to expand the space around the cord] before those nerves are irreparably damaged seems like your best shot for getting back what you've lost and preventing more/worse problems down the road.

It's a big surgery to go through -- since having bacterial meningitis [twice!], anything that opens up the dura scares the beejebus out of me. But the fact that you discovered the cause of your problems so fast and have what sounds like really good doctors working with you lead me to believe that the benefits of having this done are worth taking the risks.

Best wishes, VQ -- it's a crappy hand to have to play, but I'm hopeful you'll make good decisions and do well.

[ChesBay]

Wishing you the best VQ.

I had a good friend, c4-c5, who had her syrinx repaired w/shunt about 14 years ago and all went well in terms of no further problems.

[rdf]

Best wishes to you VQ.

[Van Quad]

Hello friends, long story short, the operation went off better than I could have ever expected. I was terrified going into surgery because I had been warned that there was a high failure rate with duraplasty surgery. Even in preop, I was thinking of bailing on them.
But once they did a laminectomy, the cord decompressed and the spinal fluid began to flow normally. They did not have to do a duraplasty or even a fusion. My arm strength returned to normal within a day and the pain in the shoulder was completely gone.
It was interesting being on the Spine Ward 33 years post-injury. I still have good friends from the Spine Ward staff and my original injury in 1978.

Thank you all for your best wishes. I have a lot to be thankful for.