Re: Neck Pain, Tethered Cord and Chiari

[Guest guest]

Hey there,

I just saw your post. I have been offline for a while and you are

probably still in NY after surgery. If there is anything I can do to

help let me know. I have ACM, EDS, and TSC. My children all have

varients of the same so I unfortunatly deal with it a lot. We are all

Pts at TCI too.

Your costs of surgery will depend on how many laminecomies they have

to do. I have constant neck pain but the detethering helps some.

Most of my neck pain is minimal and due to the fact that I have been

fused which would have to be done for me no matter the detethering

issues due to instability.

Charnel

>

> Hello all -

> I recently joined the group and it's great to read everyone's

> thoughts and experiences. I think the members of this group have the

> ability to empathize with/understand each other (even thought we've

> never met) often times more than friends or family. So continuing on

> the recent topic of tethered cord and chiari ...

>

> This week I was diagnosed with tethered cord syndrome (tight filum

> terminale) and mildly herniated cerebral tonsils (essentially

> borderline Chiari). I was diagnosed by Dr. Paolo Bolognese at the

> Chiari Institute in New York and am having the de-tethering surgery

> on April 21st, done by Dr. Milhorat in NY. (Sounds similar to the

> descriptions posted recently by in Wyoming and in

> North Carolina).

>

> My primary symptoms are constant and severe pressure/pain in my neck

> and head for over 8 years. Other symptoms include fatigue, pressure

> in my ears, memory loss, among many others. Like many of you, I've

> run the gamut in unsuccessful treatments - medicines, chiropractic,

> PT, botox, facet blocks, injections, etc. But this will be my first

> major surgery for this. I had a couple of questions for the group:

>

> - Does anyone else in the group have neck (or head) pain as well as

> tethered cord? If so, did the de-tethering surgery help or cure the

> neck pain? Any other thoughts on tethered cord and neck/head pain?

> Most of my major symptoms involve the head and neck, and mimic those

> of Chiari. My only symptoms of tethered cord seem to be frequent

> urination and mild low back pain. I've read about the connection and

> potential cause and effect of tethered cord and Chiari, but my

> symptoms would seem to benefit more from the decompression surgery.

>

> - For those who have had the de-tethering surgery, is it possible to

> lay on your back immediately after surgery while recovering in the

> hospital? Or did you have to lie or your side or stomach?

>

> - Anyone happen to know the approximate cost of the surgery (a

> laminectomy)?

>

> Thanks a lot for your thoughts,

>

> in Missouri

>