Herniated disc and EDS

Hypermobility Forum for people with Marfan, EDS: Dealing with doctors: Herniated disc and EDS
Top of pagePrevious messageNext messageBottom of pageLink to this message   By Sheila on Thursday, August 30, 2001 - 08:30 pm:

I have a disc herniation in my neck and in my lower back, both were caused by a car accident last year. We were rear ended. I'm not sure if I have EDS but a genetic dr. said my teenage son has it and since I'm also double jointed-I probably have it too. From reading other posts I've learned that sometimes hypermoblie people won't show some of the signs for a disc herniation, such as the leg raising sign. And since few doctors know much about this condition I was wondering if anyone here could tell me just how to tell those "know it all doctors" that my herniations are causing me problems, even if I don't have pain when they move my arms and legs certain ways. I already have some nerve damage in my leg because the nerves have been pressed on for too long. If doctors don't get the "required" response from those movements they do to tell how bad you're herniated then they don't want to do anything about it. My shoulders and elbows are hypermobile but I've never dislocated. Heck, I'm 35 and I never even knew I had this, the only problems I've had with hypermoblie joints are that my knees go back farther than other peoples and as a child I use to twist my ankles a lot. Also does anyone know of a good dr. for EDS in Ohio? I saw one Rhumie and I don't think she knew anything since she had to bring out her medical book.
Thanks for reading my post.
Sheila

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Silvia on Friday, August 31, 2001 - 04:16 am:

Hi Sheila,

Maybe you should get diagnosed by a genetecist too. I'm just wondering if you get diagnosed by one, he/she can back you up regarding the disc herniation not responding to certain movements.

Now, why don't this doctors believe you? Is your herniation clearly visible on an MRI or CT Scan? And if so, is it bulging out alot or mildly? These are all very important things to consider. The reason I say this is that I have a mild bulge on one of my low back discs that showed up on an MRI. A chiropractor I saw told me this was the cause of my pain but an orthopedic doctor, neurologist, and neurosurgeon told me it wasn't. It turns out I really had sacroiliac joint dysfunction due to loose ligaments on those joints. This is something that hypermobile people can experience. From research that I did, I read somewhere that sometimes people who have disc herniations get surgeries needlessly because they get operated for the wrong reason; which is due to the real pain problem coming from the SI joints and not the disc....I'm not sure if this is what your problem is or not but check out

http://www.sidysfunction.com/

If you want to learn more about it. Also, a treatment that has really helped me with this is Prolotherapy.

Hope this helps.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By sheila on Friday, August 31, 2001 - 08:35 pm:

Silvia, I had an MRI which found my lumbar herniation as well as an EMG/NVC(Nerve test)which found nerve problems coming from the L4-5 and L5-S1 area, most of my problems are felt in my legs and toes so I don't really think it's the SI joints. They do believe me about the lumbar area, it's just the cervical area that's a little confusing.
You see, on the MRI report it says I have a bulge yet when my latest doctor looked at the actual films he said it wasn't a bulge, that it was herniated. All my neck pain and arm pain/weakness have just been dismissed by the old doctors because they only read the report so they didn't know that it was herniated. So I'm just wondering if some of those movement tests they did on my arms would have been different if my joints were not hypermobile. I'm going to see a Neuro. Surgeon in about two weeks and I was just wondering if I should tell him certain movement test might not indicate a problem (because of hypermibility) when there really is one.


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