Has anyone used/heard of Dr. D. O'Rourke UofP for Chiari I decompression?

Question

Finally!  My daughter has been suffering with severe progressive (debilitating) headaches originating from her occipital region for years.  We tried everything including extremely painful (and ultimately not helpful) occipital block injections.  Looooong story short, a Chiari I mf was found during an Mri ordered by an ENT (incessant progressive tinnitus and hearing loss) she is scheduled for dx surg on Jan 25.  I saw somewhere that Chiari malformations is a specialty of his but I want/need to see if anyone has any direct experience.  He did not seem to think that certain things were due to Chiari that it seems are known for being related.  I.e., her exhaustion.  When I asked if that could be perhaps related to the unrelenting pain for 10 years he said no, not at her age ... ?  Severe chronic pain is exhausting at any age -

GrandmaL10 · Answer

My daughter and grandaughter have Chiari 1.Dr.David Jimenez in San Antonio is Awesome he is a chiari specialist .We live 10 hours away from him but he is the only one we will trust.He is great my daughter will have surgery soon and my grandaughter is just seeing him in Feb to see if she needs it right now.So sorry for everyone i see how awful chiari can be.Prayers for you all.Dr.Jimenez is highly recommened for those of you who need a great chiari Doc .Thank you

selmaS · Answer

You may be able to appeal to your INS to cover it regardless since you need a specialist and do not have any in Network.....give it a try....when I went TCI NS;s didn't work with INS at all now they do...

Emme80 · Answer

I've had a Dr. tell me that I should not be experiencing this kind of pain at my age....this pain that I'm having is a post-op Chiari decompression surgery complication. I did see this Dr. one more time & I did tell him that Chiari does not care about age...(I'm 41,  and not dies a post/op complication. I don't understand the she thing-seems I'm hearing a lot of it these days.
Indeed, I can say 100% that severe pain CAN certainly cause heavy fatigue(though I find many sleepless nights!) 
I'm glad that you're being so proactive for your Daughter! I can speak, as a daughter, of just how much a child needs their mother ....at ANY age as well! 
I wish I could be more helpful regarding Chiari Specialists for you...
Please keep us updated on your daughters (and your) journey through this....it's definitely like treading rough waters. So, we're here for you! 
:)

selmaS · Answer

Sorry no, I did go down there, but was a waste of time and money...I went to NY to TCI and was well pleased.

selmaS · Answer

Hi...sorry I am not personally familiar and I agree with you pain regardless of age will cause severe fatigue.

 Looking at specialties a Dr is involved with  I would expect to see the current name of the condition (Arnold Chiari being an older term and now used only for  Type II malformations.

And I would expect to see related conditions like Syringomyelia and tethered cord.....if not...maybe he is not a Chiari specialist and just a surgeon that has done a few of them.

 For me a specialist is one that has a focus on Chiari and ALL related conditions and does research on all of them.JMHO