How do you know if a neurosurgeon is really a Chiari specialist?

I keep running into neurologists & neurosurgeons that consider themselves qualified to treat my CM; but am beginning to think that just having patients that have it isn't enough.  I live in Louisville, Ky & I have been told by some that I may have to go to Cleveland to get any real help. I've been told that my cm is "okay", that I have hydracephalus, that I don't have it;  never been told the mm's or if I have a syrinx.  I would've thought that a specialist would go over all of that with me.  I have a neurosurgeon appointment in late July but am thinking I may need to go elsewhere!  Thanks for any help!  

[selmaS]

Hi and welcome to the chiari forum.

We do have a list of drs on a thread here that was compiled by the members and were of drs that they had been to and liked.

U do have to do ur own research, and u may need to travel to get to the right dr for u.

Our list may not be a complete list of chiari specialists, but we r trying to keep it current and only of drs that we felt helped us.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

Well sounds like u got the royal chiari run around....once u see a chiari specialist that pretty much stops.....

The drs should be looking at ur brain MRI w/wo contrast, a cervical , thoracic and lumbar spine MRI along with a CINE MRI to check CSF flow for a blockage, tethered cord,syringomyelia  and EDS, DDD, PTC....and other related conditions.

May we ask who u r going to be seeing in July?.....maybe someone here is familiar with the dr?

SO happy to have u as part of our family here, so sorry for the reason u had to seek us out.

"selma"

[selmaS]

Hi and welcome to the chiari forum.

We do have a list of drs on a thread here that was compiled by the members and were of drs that they had been to and liked.

U do have to do ur own research, and u may need to travel to get to the right dr for u.

Our list may not be a complete list of chiari specialists, but we r trying to keep it current and only of drs that we felt helped us.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

Well sounds like u got the royal chiari run around....once u see a chiari specialist that pretty much stops.....

The drs should be looking at ur brain MRI w/wo contrast, a cervical , thoracic and lumbar spine MRI along with a CINE MRI to check CSF flow for a blockage, tethered cord,syringomyelia  and EDS, DDD, PTC....and other related conditions.

May we ask who u r going to be seeing in July?.....maybe someone here is familiar with the dr?

SO happy to have u as part of our family here, so sorry for the reason u had to seek us out.

"selma"

[sco2004]

Selma

  Thank you SO much for some guidelines & tests to get me started!  I will be seeing Dr. Nauta in Louisville, Ky.  He's supposed to be the best around here, but don't know his expertise in Chiari just yet!

[selmaS]

I hate to say, a great NS is not always the best for chiarians.,...unless they have the experience behind them .....

I am not familiar with this dr, but I am sure once u go u will get a better idea...plus there is no way for me to be familiar with that dr....lol...I do not know all of them out there, and if u have a good experience we will have one more to add to our list : P

"selma"

[shanmomof3]

Hi, just my opinion, if the dr's practice doesn't revolve around chiari then they are not much of a specialist. Thats not to say that there aren't some great NS out there that are capable of doing a successful chiari decompression surgery. Its just that they dont always look at all the other things that go along with chiari. It also might be useful to you to send your films off to some of the other drs while you are waiting to see this dr in july just to see what their opinion is. Blessings ~ Shannon

[zygy]

I think that if you are educated on what needs to be looked at you can help someone that is a great NS.  I loved my NS and she was not on the list, she listened to the list of things that I thought needed to be checked, agreed with me and made sure to do any tests that were thought necessary.  She had also had done a couple hundred of these surgeries.  I am only three weeks out of surgery but doing well so far.  Time will tell how she did :)  I am happy that I was able to have surgery close to home and was very happy with her as my NS.  Ask lots of questions about Chiari and make sure they have the right answers. I am also lucky to live near a wonderful hospital and I knew it was a good place to have surgery.  If I had other conditions as well I might have thought more about travel to find someone with more experience.  I think each case will be different.  For me, I wanted to feel comfortable with the person... and I did,

[selmaS]

U r sooooooooooo right...and I hope no one feels our list is all inclusive...it is not....we add names of drs as members get past their 6 month post op MRI and were happy...so be sure to add ur drs name to the list!!...not all will be connected to a chiari center/institute type of facility, but if they r well informed and do many of these types of surgeries they may be as capable as the others that only do chiari surgeries...we all have to decide for ourselves....u do need to be comfortable with the dr u choose.

Education and bing ur own advocate is the way to go !!

"selma"