Fw: [QUAD-L] Hey guys can you give me an opinion on Syringomyelia

[Corie Jones]

----- Original Message ----- From: Lana Baugh To: Corie Jones Sent: Friday, November 12, 2004 12:17 AM Subject: Re: [QUAD-L] Hey guys can you give me an opinion on Syringomyelia Corie,   My son had real severe pain until he got a Baclofen pump. He is about 9 years post injury C-4-5. got his first pump 1 year after injury. reduced pain and made life livable again. I'm pretty certain you can have a spinal shunt if it empties into the peritoneal cavity and have a Baclofen pump. Also, shunts -where ever they place them - head or spine can stop working and they need to be followed. If they stop working symptoms can return or worse with shunts in the head. Some friends of mine son had the distal end of the spinal shunt in the pleural cavity and he had alot of problems with it. Gabe's neurosurgeon said he'd never guarantee a shunt longer then three days.They plug easily. Gabe has a ventricular- peritoneal shunt (head)  and in 32 years has had 15 shunt revisions . Gabe has a syrinx C2-C4 and he has always been at risk because of spinal deformities from birth. His syrinx was not treated because it is in the same place where he had a laminectomy .That's the surgery that went bad afterwards and left Gabe as a quad. The neurosurgeon feels the spinal cord is not being impinged upon. (Different doc) so no surgery right now. The syrinx has always been there out in the wings. He was diagnosed last summer. If is any one is interested I have several good sites on syrinxs. Lana-mother Gabe-C4-5   Corie I have been unable to post for some reason. Could you post this for me? Thanks   ----- Original Message ----- From: Corie Jones To: [EMAIL PROTECTED] Sent: Thursday, November 11, 2004 11:22 PM Subject: Re: [QUAD-L] Hey guys can you give me an opinion on Syringomyelia Hi Ron, I found out I had a syrinx four years ago at my injury level C 4-5.  My only symptom was increased pain, basically it want from bad to worst and in more areas on my body.  So my neurosurgeon who did my original neck surgery put a shunt in to drain the syrinx.  It made absolutely no difference on my pain.  And my pain has gotten worse.  I have severe ice burning pain in my abdomen and back and hot burning and needles pain in my butt, in between my thighs, and down to my knees and sometimes down to my feet.  I have tried nearly all the medications given for nerve pain, plus all the narcotics, and have had little to no relief. Good luck at Craig!  I wish I could have went there myself. Corie ----- Original Message ----- From: [EMAIL PROTECTED] To: [EMAIL PROTECTED] Sent: Thursday, November 11, 2004 1:04 AM Subject: [QUAD-L] Hey guys can you give me an opinion on Syringomyelia Hi, Im pretty new to the list names Ron c7 quad 7 yrs post former police officer 28 yrs old from St. Louis, Missouri. Anyway Im in pretty good shape as quadom goes but in the past year a developed symptoms and an mri revealed a syrinx at c7 like 2.2 x 7 cm in size. I went to 2 neuros here in missouri and they said just do nothing and suffer in short. So I went for the big guns at craig hospital to get an opinion and sent them my mris. They told me that I had a syrinx and it was a candidate for sugery. 50-50 on helping pain. Different percentages on helping my other symptoms.Im trying to get my insurance to pay for  surgery out of state, could you guys give me opinions, insight, or anything im missing on this issue. Im 28 dealing with lots of pain and symptoms. Is the risk to high to get the syrinx operated on in your opinions.Thank You much                                                                                                     Ron Pracht