eds cause

[ramgirl77]

I have a quick question to the people that have also been diagnosed with eds if the ultimate cause of the CM is due most often to tethered cord? Because a big misconception in eds is that we are so bendy but sometimes being bendy will actually cause the opposite effect and when tendons are stretched too far they get damaged and thicken which in turn makes us stiffer. IE: tethered cord. I have not been diagnosed yet with CM but I often feel the tugging on my spinal cord, and my flexibility is nowhere even close to where it used to be.

ramgirl77

[selmaS]

May I ask r u going to see Dr Francamono??? I am hoping to get to her as well in Baltimore....

[CB1122]

Hey I have EDS but do not have TC... just letting you know since there doesn't seem to be too many with EDS on here.

The Neuro I saw at TCI said my 2mm herniation could be due to my EDS, but I don't have a definite dx of Chiari.

Anyways I am scheduled to see a specialist about EDS in Baltimore. I have to finish filling out this 31 pg packet before I can get an appointment.

[selmaS]

I did not have the release surgery...only the decompression surgery for chiari....

It all depends on symptoms just like with chiari and what the risks r and what the benefits could be...but a released TC can reattach....and need to be redone  later on....

What I understand for EDS first it depends on the type u have....and then many times it is just PT to help keep the tendons strong.....

Goodness..and these drs r EDS specialists?

"selma"

[ramgirl77]

So you didn't have your cord released when you had surgery?

I keep having doctors ask me what would be the point of being diagnosed? There isn't anything they can do for it. I have been to the EDS doctors and let me tell you they are not any better than the doctors for chiari (non specialists of course) I have been treated by doctors and therapists that have EDS and I am not really any better off. I also have HNPP a demyelinating neuropathy so they probrably just get overwhelmed with me.

[selmaS]

HI and welcome to the Chiari forum.

U pose a very good question, and ur thoughts on it make sense...I wish I had answers as my TC is pulling more lately as well.

I had the chiari PFD surgery in May of '09....still have symptoms as I was told I still have chiari....and my TC and a bulging disk ...so, I still have issues, but am sooooo much better than b4.

I was also dx'd with EDS prior to surgery...I had no idea it was a condition that caused me to bruise easy and heal slowly until that point.

Plus when I was younger I never would have considered myself flexible, the thought of even trying many of the positions many do with this much flexibility made me think it would hurt, so I never would consider trying.

Plans r being formulated for me to see a dr that specializes in EDS and I hope to learn more at that time.
We do have a EDS group here on MedHelp....http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc

Glad to have one more here to share with , but not happy we share many of the same discomforts.

"selma"