Tale of Two Neurosurgeons

[kittygr]

I've really having a hard time. The first neurosurgeon that I met with said that I have a chiari malformation, retroflexed odontoid, and basilar invagination. I went for a second opinion and the second neurosurgeon gave me a polar opposite diagnosis. I do have Ehlers-Danlos Syndrome hypermobile type. The first NS understands EDS while the second NS does not which, I think, had a big effect on their diagnoses.  I am so confused and overwhelmed. I don't know what to do.

Thanks for letting me vent.

[selmaS]

  I have to say ditto to many of what was said above....

So many of us get polar opposite responses from NS's...I had 3...and trust me this is y u want to educate urself so u know which one is the one with the real experience with chiari.

  If need be get a 3rd opinion, but do look for a NS that is a true chiari specialist ...we should always try to compare Drs of the same caliber...which is not always easy....some may self proclaim to be a chiari specialist and may only treat a patient every so often, that does not a specialist make....so do research on them and know as much as u can so u can identify the real McCoy.

[Rahe28]

It sounds like the first NS has a clue about Chiari. Let me tell you the tale of my two NS's. The first one that I saw said that I had a larger chiari malformation and needed surgery, yet  the only symptom he said that was affected by chiari was my straining HA's. Then I decided to have s second opinion...I ran across the NS that I am with now. And he, explained things the way that your first one did. The other NS never mentioned that I had a retroflexed odontoid or that my tonsils were wrapped. The second one however did. Are either one of the NS's a chiari specialist...or known to have experience with it?

[irislita]

Well maybe u can count all together.people with chiari can have ehlers danlos plus the retroflexed odontoid and basilar invagination...one doesnt exclude the other.whereas the chiari and retroflexed odontoid is mostly seen on images and ehlers danlos is a connective tissue disorder which goes often together with the rest.anyhow the ehlers danlos symptoms cannot mimic the symptoms of the other condition.i hope u understand what i wanted to say!as for chiari and bi u should seek treatment,but if u additionally have e.d.the ns should take this in consideration for operation in terms of dura patch,incision,craniocervical instability,healing etc...a true chiari specialist would test u for these things.