I really feel for all of you that are suffering from this malady. I personally went through this for three weeks just following my initial injury. It was horrific and I don't know how you are able to cope as well as you do. I do have nerve pain which can be described as cold and hot with pins and needles, but thankfully it is only on the right side of my neck and right clavicle. Occasionally I do have the same problem just below the left clavicle, but I sincerely hope it doesn't progress in a more than it has over the last 12 years.
Wishing you all the very best, Quadius On 8/19/07, Corie Jones <[EMAIL PROTECTED]> wrote: > > 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 <[EMAIL PROTECTED]> > *To:* quad-list@eskimo.com > *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 > >
