Symptoms getting worse

[Tharris85]

I was diagnosed about a month ago and I just continue to get worse. The pressure in my head is unbearable with migraines daily and at leaste twice a week I become very week and get the feeling of being almost numb and very disoriented and my head is very heavy and if I try to move I become dizzy. I have also been having trouble swallowing and my memory is horrible for a 26 yr old. I have been seeing a neurologist that said my chiari is not the cause of my symptoms because it is only 6mm and is only treating my migraines. I can't continue to go on like this and I am beginning to feel hopeless. I am taking topramax for migraines plus tramadol and Vicodin prescribed for pain but it still hurts. No pain med can take away the squeezing I feel behind my ears! So I guess my question is even though my herniation is only 6mm can that still cause these symptoms and if so can they fix me?!?

[bledpub]

They diagnosed mine by using the scale as well as doing a tissue sample and a muscle biopsy (ouch!). There was some bloodwork involved, too. I'm double jointed, have soft skin, and a lot of joint pain but I have vascular EDS. I've had my uterus and gallbladder rupture so far. Hope that's all that does.

[selmaS]

  I do not think that can be a blanket statement...plus those with EDS tend to have cranial instability and can be the cause of HA's....and numbness...

But as for EDSers doing worse with a surgery, all depends on if u know and prepare b4 surgery...ie- if u go to surgery, have a PFD with a bovine patch after a duraplasty yes u may have more issues bcuz u have EDS...but, had u known the dx b4 and the NS used pericardium then u would not have had that reaction...so, many times it is what we know ans prepare 4, and Y I say check to see if u have EDS b4 surgery as it can affect how u feel and heal post op.

And I have heard some thoughts on EDS and JHS being considered the same thing, however...we all have to be evaluated to see how it is affecting us, just like we do with chiari...not all with low lying tonsils need surgery and not all with hypermobility have pain as a result...it is as individual as we r.

[seamatty]

Well I don't have blue sclera from looking online but I do have some hypermobility and joint pain... I would guess I have eds3... I believe my daughter does to as she was dx with hypermobility. I just read an article by a dr Ghent who is an expert in EDS and he says there really is no difference between eds 3 and hypermobiity syndrome. Seems like docs worry more about the vascular type. However it now makes sense why my chiari although small in herniation and apparently no crowding could be causing me more problems. From what u understand sometimes Eds patients do worse in surgery. Is that true?

[selmaS]

  And from a few other things, I guess the sublexions and the bruising and the way my skin was...it is velvety....lol...sounds weird to say, but it is.I also have blue sclara (sp) whites of the eyes have a blue tint.

[seamatty]

So did they diagnose it purely off the Beighton scle?

[selmaS]

  That has yet to be determined.....the EDS specialist is out of state and I have yet to get there, plus I will have to go to a geneticist next as well.

Much of my dx's were put on hold after my PFD as I had my DD's wedding to contend with and $$$ issues.....

  I hope to get there this summer.