Surgery Tomorrow morning - question about EDS

[jcandpcb]

So I'm in North Carolina and scheduled for Surgery with Dr. Coulter.  Had my consult yesterday - What a difference from my other surgical consult in Savannah!  The Savannah surgeon spent all of 15 minutes with me, told me the surgery is day/outpatient surgery - maybe a one night hospital stay.  He never touched me, did any neuro exams.  Yesterday arrived at Wake forest (wow this hospital is HUGE!).  No wait time, the PA did several neuro tests - Dr. Coulture spent almost 2 hours with us, more testing, answering all of our questions.  I asked about Ehlers-Danlos but he said that's not something he diagnoses.  One thing that is very concerning to me is that while filling out my history paperwork I learned that my great grandmother, great uncle, great aunt, and my grandmother all died of a coronary anyruism/aortic anyruism.  He said I have some classic Chiari symptoms, but some symptoms that are not so common.  He said having the surgery may not make things better.  He did suggest having a genetic study done too.  What kind of doc do you need to see for EDS?

[AmyFS]

Selma- do have more info about the vascular type of EDS?  I saw this in your post and I almost jumped out of my chair (well, slowly & carefully but you know what I mean LOL).  I am very curious about this.  I have vascular issues & saw a vascular surgeon once a few years back but never followed up because this stupid brain surgery thing got in the way...I don't have alot of the typical EDS symptoms (but do have some)so we may be onto something here.  And my paternal grandmother passed away very young (in her 30's) from a type of annuerism.  Hmmmm. Would this be something a NS or a vascular surgeon would diagnose? Thanks!

[Sexybare]

Wait u went for consult today, and r having surgery tomorow? I'm confused!

[selmaS]

  Hi wishing u well tomorrow....

A NL could have DX'd u with EDS, but a geneticist will determine the type....

there r also some rheumatoid Drs that will dx it as well......

DO u know if u r having the dura opened and a patch placed if so what type?

There is a vascular type of EDS so that could account for those family history issues...but until u go for testing it is hard to say for sure.

  May I ask do u have a CSF obstruction?