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New to ASAP

Postby sherryhelms » Thu Jan 05, 2012 12:30 pm

by sherryhelms ยป Thu Jan 05, 2012 11:28 am

Hello,
This is my first experience on the ASAP site. A few months ago, I was diagnosed with 3 bulging discs, 1 herniated disc, a small chiara and a syrinx from C1 to T11. Having shots for pain. My doctor is a neurosurgeon in Montgomery, AL. He sees about 11 syrinxes a year. Wondering if I need to see a specialist. Love to hear from you.
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Re: New to ASAP

Postby karenb » Fri Jan 06, 2012 12:19 am

Hi Sherry,

Welcome to the club nobody wants to be part of!

I don't have a Chiari malformation, but I do have a syrinx (T6-T9 - shorter than yours), and it has definitely impacted my life.

You didn't mention the diameter/width of your syrinx - do you have MRIs or reports?

A big thing is that you need a Neurosurgeon who specializes in CM/SM - not every neurosurgeon (and definitely not every neurologist) is familiar with these conditions or has the knowledge about how to treat them. Translation - you definitely need a specialist NS.

In addition, you will probably need a pain management specialist - and I mean a real specialist (not a drug-pusher or a shot-maniac - a lot of us have had those, and there are much better, less impacting ways to treat pain).

I'm sure you'll hear from others as time goes on. (I'm about ready to knock out for the night... sorry...)

Karen
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Re: New to ASAP

Postby sherryhelms » Sat Jan 07, 2012 10:35 am

Karen,
Thank you so much for your reply!!! Wonder how to find a specialist closest to me in south Alabama.
Thanks so much!
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Re: New to ASAP

Postby razzle » Sat Jan 07, 2012 1:18 pm

Type Alabama in the search box up above and see what drs others are using ...
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New to ASAP

Postby razzle » Sat Jan 07, 2012 1:20 pm

Pam Holmes
112 James St
Ozark AL 36360
334-445-0760
pamjh@charter.net

she lives in AL maybe she can give some suggestions . she is on FB too..
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New to ASAP

Postby pseudotumor » Wed Jan 11, 2012 9:12 pm

Welcome Sherry, and good luck on your doctor search. :)
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Re: New to ASAP

Postby gunflint » Thu Jan 12, 2012 10:40 am

C-1toT-11, I wonder what your NS would consider a a large syrinx?
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Re: New to ASAP

Postby karenb » Thu Jan 12, 2012 10:15 pm

Sherry,

Doh! I don't know why none of us asked about the width of your syrinx... that's a major factor in determining whether the syrinx is "small" or "large". But you said the Chiari malformation is small... which means something entirely different.

It really would be a good idea to see an NS in your area who specializes in Chiari & SM - They would be in a better position than your local NS to evaluate the whole picture.

Best wishes!

Karen
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Re: New to ASAP

Postby passmass » Thu Jan 19, 2012 9:39 pm

Sherry, Hi glad you found us. I live in Mississippi, above Jackson. I have been to TCI in NY and had surgery there fore tethered cord. I just had my second disc surgery. I have a wonderful Neuroligist in Jackson, Ms and just found a Neurosurgeon in Jackson.
I was seeing a NS in Memphis , TN. She moved to Penn.
If you need names let me know. I know MS is a drive but I trust my Doctors.
Thanks Allen
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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