Dan, Ron & other's with a syrinx,
I was diagnosed with a syrinx in 2005 My rehab Doctor at Kessler
prescribed gabapentin for the pain and also suggested putting in a stint to
drain the syrinx or the drain it with a needle. I only opted to take 500 mgs of
gabapentin that was all I could tolerate.
I have been experiencing more pain in the past year and was put on kadian,
which is a time released morphine and even though I only take at night it
stay's in my system throughout the day to relieve the pain.
I did have a second MRI last spring which showed that the syrinx had grown
downward, this MRI was ordered because I was losing feeling and function but I
no longer experience these symptom's-they were short lived.
Well, I hope some of my information help a little. Bobbie
Sent from my iPad
On May 14, 2011, at 22:52, RONALD L PRACHT <[email protected]> wrote:
> Hey Dan,
> You know I have a syrinx also, and I can tell you i experience the pain
> in my gut and back, and I feel the sensation to noise just as you describe. I
> havent had an mri since 2004 because I know the doctors in St. Louis wont
> perform surgery on me unless Im losing function. The positive to your
> situation is your syrinx is expanding downward which means it will only cause
> you more pain and not interfere with function. I have heard of some people
> finding a neurosurgeon that will drain the syrinx, but since we are quads and
> a surgical mistake can result in lose of arm function most neuros wont touch
> us. If we were low paras I suspect neoros would be more willing to help. Its
> not easy living with pain everyday and people not understanding the
> condition. I know that doctor Scott Falci in Colorado could help both of us,
> but he wouldnt accept my insurance which is United Heathcare. The cost of a
> syrinx surgery is at least 50,000 dollars and probally would be more, so
> private pay isnt an option. If I figure out a solution I will let you know.
>
> Ron c7
>
> From: Danny Hearn <[email protected]>
> Subject: [QUAD-L] pain-syrinx
> To: [email protected]
> Date: Saturday, May 14, 2011, 6:50 PM
>
> Hi everyone-- do any of you experience increased pain the longer you get up
> in your chair? I used to be able to be up in my chair for about 14 hours,
> but now after getting up- nerve type pain and back pain and pressure seems to
> grow stronger as I'm up in my chair, at times it seems unbearable after just
> 5 hours or so. It seems any loud sounds such as my wife calling for the dog
> or yelling upstairs to someone goes right thru my lower gut area ( a painfull
> echo like pain from loud noise ) I was diagnosed with a syrinx a few years
> after my injury in 1997--it was in the c-6 injury area--a year and 4 months
> ago the syrinx had spread a bit from c-6 to T-2. BUT I had not lost any
> function so they did not want to do anything. Have any of you had any similar
> problems ? I get worried about it getting worse and not being able to get
> put in or out of bed. I have a supra-pubic catheter also----------any ideas
> or suggestions ? thanks, Danny Hearn C-6 august 3rd car wreck.
