Guest guest Posted April 16, 2012 Report Share Posted April 16, 2012 I will respectfully disagree with a comment that states we should go to a doctor that " only " works with Chiari. Some of the top Chiari docs in the nation have expertise in other areas as well. I would just make sure that the doctor specializes in Chiari and does a large number of the surgeries. Many of these doctors are on the ASAP board and the Chiari-Syringomyelia Foundation Board. Be aware that you very likely have to travel. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2012 Report Share Posted April 16, 2012 I've always said, see a Chiari surgeon that does more Chiari related surgeries, than any other type of neurosurgery. In the end, it is up to the patient to make that decision. Kathleen Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome, surgery for everything but EDS since 1998. http://chiariconnectioninternational.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2012 Report Share Posted April 16, 2012 I agree. My surgeon was one of the top specialist in the US for Chiari but he did other brain/spine surgeries as well. Cortney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2012 Report Share Posted April 17, 2012 Hi Guys, I have to agree with Suzanne on this one. Now some of this comes from my own experience. I was one sick pup and misdiagnosed, as well. I was beyond fortunate enough to get the help of a wonderful surgeon who was not a " known chiari specialist/expert " , but she did have experience with this condition. ...My " story " http://www.chiariconnectioninternational.com/goodstories2.html Scroll down to SALLY It would be GREAT if ALL Chiarians could get to one of the " Experts " But this is just about impossible...the numbers alone really don't allow it. As far as doctors who just do Chiari.... I honestly don't know how many of these there are, right now... And I would still want to be sure that they " did Chiari well " . <g> As far as the " established Chiari experts " there are literally only about a half dozen. Hopefully MANY more will be added to this list... And yes, sadly, at this time most people have to be willing to travel to get the help that they deserve... But getting to a knowledgeable doctor is certainly worth it... Take care, Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa _____________________________________________________________________________ I will respectfully disagree with a comment that states we should go to a doctor that " only " works with Chiari. Some of the top Chiari docs in the nation have expertise in other areas as well. I would just make sure that the doctor specializes in Chiari and does a large number of the surgeries. Many of these doctors are on the ASAP board and the Chiari-Syringomyelia Foundation Board. Be aware that you very likely have to travel. Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2012 Report Share Posted April 17, 2012 We are learning the hard way that sometimes even traveling across country to have surgery with a " Chiari only " expert still causes problems. No surgeon can guarantee results, and that is understandable. But when you find out that possibly a procedure that was explained and billed for may not have even been done, the news is devastating. Where do you go when you can't trust the " top experts " ?! Sent from my iPhone > > Hi Guys, > I have to agree with Suzanne on this one. > Now some of this comes from my own experience. I was one sick pup and misdiagnosed, as well. I was beyond fortunate enough to get the help of a wonderful surgeon who was not a " known chiari specialist/expert " , but she did have experience with this condition. > ..My " story " http://www.chiariconnectioninternational.com/goodstories2.html Scroll down to SALLY > > It would be GREAT if ALL Chiarians could get to one of the " Experts " > But this is just about impossible...the numbers alone really don't allow it. > > As far as doctors who just do Chiari.... I honestly don't know how many of these there are, right now... And I would still want to be sure that they " did Chiari well " . <g> As far as the " established Chiari experts " there are literally only about a half dozen. Hopefully MANY more will be added to this list... And yes, sadly, at this time most people have to be willing to travel to get the help that they deserve... But getting to a knowledgeable doctor is certainly worth it... > Take care, > Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa > > __________________________________________________________ > I will respectfully disagree with a comment that states we should go to a > doctor that " only " works with Chiari. Some of the top Chiari docs in the > nation have expertise in other areas as well. I would just make sure that > the doctor specializes in Chiari and does a large number of the surgeries. > Many of these doctors are on the ASAP board and the Chiari-Syringomyelia > Foundation Board. Be aware that you very likely have to travel. > > Suzanne > > Quote Link to comment Share on other sites More sharing options...
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