Tethered Cord

[aimsela]

Hi all,

Thank you all for being here. I'm glad I found this place. I feel like I've found a group of people who know what I experience every day. I took the rest of the day offf work because my back is just killing me. I have a question for whoever can answer. My Dr. told me that my spinal cord does not stretch like a rubberband like it should. What does that mean? Is that what tethered cord is?

[selmaS]

  Not to freak u out, but if u have those 2, u may also have Ehlers-Danlos Syndrome too....trifecta....

I felt the same way u do when I found out and I want to stress unless u have life threatening issues take ur time to find a Dr that is right for u, do not go with the first to offer surgery, as u want the most experienced, and one u r comfortable with.

I did not watch the videos, I don't like that kind of stuff, I educated myself, but no videos for me...my DH did,....which helped him understand what I was going thru.

The issue with CM and TC is we ca get the PFD surgery and feel better or it can make us feel worse and u have to go in for the release in like 6 weeks...I was lucky that I was able to hold off....but I can attest it is no fun...and u can still get CM symptoms as the tonsils and brain stem r being pulled down bcuz of the TC....I only hope it is a slow process....

  Not sure which of the 2 is worse to deal with.....

  DO get checked for EDS.....it can affect ur recovery if u choose surgery as an option.

  "selma"

[aimsela]

Well I do have all of those symptoms and the NS after seeing my MRI said that it doesn't stretch like a rubber band. Then told me that I have a cyst in the low back. I think that was the purpose of the 2nd MRI was to get a better look at the spinal cord. I'm thinking what else could go wrong I have 2 issues the chiari and this but it sounds like they go hand in hand. I'm so scared and freaked out about this whole chiari thing. I watched an hour and a half U-tube on a decompression surgery and cried for 4 days staight. I go back next Monday for the results and he says we will come up with a plan. That terrifies me now that I'm researching and from what I'm hearing I should see a chiari specialist. I'm just so overwhelmed by it all.

[selmaS]

  TC is when ur spinal cord is attached to ur  spinal column  usually at the tail bone area and it is tight....

There is usually a cyst where the 2 connect...on the inside and a sacral dimple on the outside...some have a hairy patch...

Those with TC will have an elongated brain stem, bladder issues, lower back, and leg issues...

TC is not always visible on a MRI so when it is dx'd using other testing like the urodynamics it is called occulta TC and occulta means hidden.

TC release surgery is highly controversial...the reason is many drs do not believe it is an issue much like chiari or that surgery will help bcuz u run a high risk of re-tethering with scar tissue. I know a few that had surgery for this and 1 had to have a 2nd surgery, 1 is considering a 2nd and the other is in constant pain...so I opted not to go forward with it....

If u have more questions, I do have it and am willing to share what I know.

    "selma"