related disorders

[kathy68]

are Chiari malformations and Ehlers-Danlos related disorders?  Do persons with chiari's show up with E-D?

[birk101]

Hi Kathy.  Until I started looking at this site  I hadn't even considered that there was a correlation between Ehlers Danlos and Arnold Chiari Malformation.  I had always read that there was a correlation between CM and Spina Bifida.  It's all very interesting.  Make sure that the neurosurgeon you go to knows that you have ED.  I was diagnosed with CM almost 20 years ago.  I found it interesting in my original findings that it will manifest itself when you turn 30, 40 etc.  Depending on the severity of the CM it can be managed by altering your lifestyle and not overstressing (which isn't easy to do).

Take care and best wishes..

Maryellen  

[youngwife]

Kathy,
Yes, ED is common in Chiari patients, but not all of them have it.  (I have never actually seen a percentage stated concerning how many do...that would be interesting to read.)

But, the significance is more in the treatment of the Chiari patient that also has ED.  Joint instability is a serious problem when you are trying to make room at the cervical junction.  If you take out bone in a patient with ED, and then the cervical spine collapses, you could possibly end up with patients having to have rods and fusions later on down the road.  (Of course, this is my unprofessional explanation).  Basically, treatment approaches are different if ED is a factor.

So, that is why it is so very important to make sure that the doctor you are considering for surgery is truly an expert in Chiari, because major damage can be done by a novice at Chiari.

HTH!  (and that I didn't scare anybody!  -.- )

Rebecca