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Wow, syringomyelia has come up twice in one week. I hope you saw my first response to another new member.
I'll offer my input when I have time to type. Today I haven't.
Lori
C4/5 complete quad, 25 yrs post
Diagnosed with SM in '94 but musta had it longer with my symptoms
-------Original Message-------
Date: 11/12/04 13:09:47
Subject: Re: [QUAD-L] Hey guys can you give me an opinion on Syringomyelia
Hello Ron,
Welcome to the list. I'm a C-5/C6 15 years post-. Had one of the first syrinx operations by Dr. Falci of Craig hospital in 1995. I was losing sensory and motor function and had additional pain symptoms. The operation went well but the recovery had some problems. It seems I was unable to build up of film to hold spinal cord fluid at the site of the surgery. This necessitated a lumbar drain. Basically, after the surgery I was leaking spinal fluid at the wound site. Now, for those nice people who have had spinal taps and experienced headaches, imagine leaking spinal fluid for five days. There was not enough morphine to kill the pain. It hurt to blink my eyes.
The lumbar drain was used to draw off excess spinal fluid every hour (10 cc and if I had a headache, five cc). Eventually, 16 days later, I was out of the hospital. My sensory, motor functions and pain returned to post syrinx. I really can't say I regained any other pre-injury functions, but I guess you could say the operation was successful.
From your post, it sounds to me as if you have done some homework with the Craig people. I am certain, if I had a recurrence that I would go there for the surgery. From my own experience (and given that nine years have passed to allow the recovery procedures to be heuristically better) a 50-50 pain relief number would not push me toward the surgery. Of course, You're the one who has the pain and has to judge.
I might go if the people at Craig tell me they will make me no worse, and assured me that the recovery is better. At least I can tell you I survived the operation albeit with the above recovery woes, and I came out in the final analysis better for doing it.
Good luck, if you have any other questions feel free to ask.
Don't let what you cannot do interfere with what you can do!
Billy Lang
----- Original Message -----
Sent: Thursday, November 11, 2004 4:04 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
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