Silas, I also have a syrinx that causes severe pain. I have never lost any function, just had an increase in nerve pain over the years, so finally went to my neurosurgeon to have a MRI 6 1/2 years ago and it showed I had a syrinx. My neurosurgeon decided to try the shunt surgery, which others mentioned that they do not usually try unless you are losing function, but because of my pain level he wanted to see if it would help reduce some of my pain. The procedure went fine, but it did not help my pain at all and I continued to get more pain after the procedure. Nothing helps my nerve pain (cold & hot burning with pins and needles from my chest down to my feet), so I basically have learned to live with it by distracting from it as best I can. I even got a baclofen pump 2 years ago in hopes of adding pain medication to it to help reduce the pain and that has not helped the pain either.
So my suggestion is if you're not losing any function, like I was not, the shunt surgery is not worth having. I have read a lot of information about the options when you have a syrinx and the other option is surgery to untether the cord where it is damaged, but only selective hospitals, such as Craig Hospital do the surgery and I've heard that they don't like to do it on quads. Good luck, Corie ----- Original Message ----- From: RONALD L PRACHT To: [email protected] Sent: Friday, August 17, 2007 1:04 PM Subject: [QUAD-L] Syrinx Silas, Lori is the syrinx expert but me and Dan also have them. Ive had mine for about 4 years. Basically its complicated yet simple, you either leave it alone and monitor the pain, or you find an expert to collapse the syrinx or put a shunt valve in. I talked with Craig Hospital in Englewood, Colorodo....they agreed to collapse the syrinx but wouldnt take United Heathcare.....price was 50,000. i had one doc in St. Louis that would do it but he was unexperienced and he would only perform shunt surgery to drain it. All my other docs said the risk was too great to perform surgery on a quad because sometimes you can lose a few levels of function during the surgery. I was also told that most neurosurgeons wont operate unless you report lose of function. Pain isnt a reason for surgery they say.......but that is crazy!!!!!!!! The risk of functional loss during surgery is 10 percent. The possibility of alleviating the pain is 50/50. Ive spent many, many hors researching this. Have read everything on the net. Have a whole syrinx folder. Remember what you have is a Post Traumatic Syrinx, not just a syrinx or a chairi malformation. The spinal injury forms a dormant cyst, then as the years go by the cyst fills with spinal fluid creating the syrinx. The fluid can go in but it cant go out. Any lifting, straining, coughing, bending, breathing can possibly make it worse.........crazy but the truth......I about cried when I was first told that. ron c7
