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Chiari Malformation Community
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Searching for a neurologist!!!

I was recently diagnosed with a Chiari Malformation Type 1 by my primary care phisician. Now trying to take the next step and go to a neurologist. Its been extremely hard to find a neurologist with a good background with CM. I live on the southern Oregon coast and am willing to travel as long as my insurance will take the doctor... Does anyone have any experience, good or bad, with neurologists in Oregon? Or the Pacific Northwest?
5 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

U may find it easier for ur PCP to do more testing and then just contact a NS, as a NL is to DX and a NS to treat.....if ur PCP does not want to do more testing or what type to do, contact a NS that is well informed with Chiari and ask which NL office they work with, that way u know they know Chiari and ALL related conditions.

We do have a list of NS's that the members here have been to, treated by and liked....the list is not a referral nor an endorsement, it is only meant to give u a starting place in researching the Drs....visit a few,educate urself and decide which one is right for u....

Below is a link to our Health Pages where u will find the list of Drs as well as other helpful tips and info-
http://www.medhelp.org/health_pages/list?cid=186
Avatar universal
Thank you for your information Selma! I have looked up the one Dr listed in Oregon. Still doing research but looks like no one in this area really has a great background in cm... I'm having such a frustrating time trying to find somewhere to go and my PCP's office isn't being much help at all... I have seen that there are several Chiari only places. It may be worth it to try to go out of state... I'm so lost. I'm sure a lot of people go through this. Thank you again for your information.
620923 tn?1452915648
COMMUNITY LEADER

  I had to go out of state as well as there was no one here that I could go to....I tried Philly and that was a bust....and one Chiari Dr in PA was over 6 hrs away.....going to  NY was the better way all the way around....I found it is well worth it to travel to get to a Dr well informed and experienced with Chiari.

  Keep us posted on ur Dr search
Avatar universal
Thank you for your input and support! Its nice to hear other peoples struggles as I'm just beginning my journey with Chiari and am already frustrated with no progress medically since my diagnosis 3 months ago... I did just post another question about additional testing. My PCP admittedly knows nothing about Chiari but is very supportive so hoping she can order more test if I figure out what I might need.
You also have EDS correct? I think thats a possibility for me as well... I've had ankle and wrist issues all my life and have had 4 knee surgeries(2 acl 2 meniscus and 1to remove scar tissue). How do you test for that?
Thanks again, Meg
620923 tn?1452915648
COMMUNITY LEADER

  No worries : )  I saw the other post and did reply to it as well.....

I also had surgery for a torn meniscus....and had surgery on my one ankle for what I was told was tarsal tunnel, but later found that DX was unfounded and the surgery unnecessary....now I do have some nerve damage and I also required another surgery to repair what they did to it....oh and walked with a cane as a result of the mess up...

Yes I do have EDS....there is a basic clinical exam and some questions...the one most do looks at hypermobility...not all with EDS have hypermobility....it is called the Beighton Score and even a score of 2 out of 9 can indicate hypermobility...as I said there are other means as well such as having blue scalra, easy bruising, slow to heal , soft skin, easy to scar,
even absorption of minerals and vitamins, and issues with meds  affecting us differently then they should.
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