Like John & Ron ... they summed it up pretty well! I did have surgery but only because I could not take the abdominal pain and hellacious full-body spasms. I was diagnosed formally in 1994, did six months of research because at that time I had not even heard of this condition... and then got three different opinions from three different neurosurgeons. At that time... none of them were really apathetic towards surgery but they weren't pushy either.
Even at the best hospitals like Craig Hospital in Denver [Englewood actually] ... they will tell you that there is only a 50-50 chance of relief. Also... the shunts that are put into drain the syrinx into a body cavity usually do not last more than three years or so. Having a syrinx (collection of natural cerebral spinal fluid) forming within the spinal cord makes paralysis a piece of cake for most of us. But I would not choose surgery unless you are losing movement. I was desperate because of the pain and spasms but my first surgery nearly killed me because of the arrogant surgeon and I had to have it redone (another nightmare that almost killed me). I now will not let even the best of surgeons get near my spinal cord unless I am on my last life. One thing that nobody addressed regarding your original e-mail was the wonderful wife that you have now. My husband has had to deal with this for our marriage of 10 years now. He also had to come home from work sometimes several times every day to do one thing or another for me. But he is of the character not to just pick up and leave like my ex-significant other of 12 years decided to do. It is very, very rough on the caregivers and that is why there is a whole other list for the caregivers of spinal cord injuries. I really give my husband kudos because, in most cases, it is a female taking care of a male and females are more nurturerers simply by nature alone. My husband was finally laid off but because I was dealing with something terrible he could not go looking for work again and decided to take early retirement without any pension or medical insurance. So they are saints on earth! That does not mean that it is anywhere near easy for him but he is of the mind that "you have to do what you have to do." And, like you, we are not willing to commit financial suicide to be eligible for Medicaid or welfare. Like someone else suggested... keep in touch with us if you do go see a neurosurgeon. Also, you might want to take a look at the American Syringomyelia Alliance Project. That is the first place I went to for information at the time. However, they tend to have more members that have the congenital form called chiari (sp?) which is similar but not the same. But it is still a good source of information on syringomyelia anyway. Their website is http://www.asap.org/ The next best one would be to look up information on Craig Hospital's website. http://www.craighospital.org/ and look under spinal cord injuries on the left and you should be able to find it on their research or something. Lori Michaelson C4/5 complete quad, 28 years post Tucson, AZ On Nov 24, 2007 12:20 AM, RONALD L PRACHT <[EMAIL PROTECTED]> wrote: > Hey, > Im a c7 quad almost 10 yrs post and have had a syrinx for well over 4 yrs. > My symptoms are stomach pain and back pain, burning, aching. I was scared at > first and still am but Ive stopped reading about it and just deal with it. > All the docs, people and articles Ive read about surgery on a syrinx leads > me to one conclusion...........dont operate unless your losing function or > are in so much pain you cant do anything. Its very seldom you hear of a > successful syrinx surgery.........most just stay the same or get worse after > the surgery. But.....if you do get surgery do not let just any surgeon do > it.......seek out a speacialist that understands a syrinx. Others on the > list can add some input. > > ron c7 > -- Lori C4/5 complete quad, 27 years post Tucson, AZ
