Is there a specialist in the Midwest?

[Huskergirl1]

Hi everyone! I'm new to the forum. 3 weeks ago my MRI showed I have Mild cerebellar tonsil ectopia-7mm. I have an appointment with a neurologist in a few days. Does anyone know of a specialist in the Midwest? Missouri/Kansas/Nebraska area?

[Huskergirl1]

Hi! I'm in KC. How was your surgery and recovery if you don't mind me asking? I have a list of doctors in CO, TX and TN now. I hope I can find a good one!!

[perkyhay]

I accidentally posted my reply on a  old account (I had forgot my password, did a reset and ended up messing this all up!)  So I'm going to reply on my current account.   Uggg, I wish I could remember things better...
Chiari brain!

[huskerfan71]

Geeze, I hope this works.  I hope you find one that you like as well.  Did you get any answers today?  I think you went to see a neuro.
Surgery, I won't lie was difficult.   They did a great job of managing my pain afterwards.   Recovery is a slow and steady process.  I think I was off work for 8 weeks.  I ended up having surgery 2 times, both by the same dr.
I grew.up in the kc/ st joe.areas!

[Huskergirl1]

I have the neuro today. I'm nervous but I want answers! He's not a chiari specialist but I will get a second opinion no matter what he says today. I figure it has to do with my brain-I should have another dr check me out! I hope I don't have to have surgery but I don't know what else can be done for this. I know I can't live my life feeling like this though. How has life been after your surgery? Are you glad you did it? Small world that you grew up around here! I'm from Omaha and moved down here. Go Big Red!

[huskerfan71]

I know the feeling of wanting/ needing answers.  The Dr's I went to around here mentioned my Chiari but said it was an incidental finding.  Ahhhh!  So I did my.own research and that's how I ended up in Colorado for surgery.  
So what symptoms are you having?  My were the daily horrible headaches.
And yes, small world!  Great win last weekend!  GBR!

[huskerfan71]

Oh, keep us posted on what you find out today!

[Huskergirl1]

I have daily headaches-some days much worse than others. Severe dizziness that wakes me up sometimes, nausea and tiredness. I've been doing a lot of my own research too so hopefully I can go in to the dr today informed and actually get some help! Thanks for your help!!

Definitely a great win!!!

[perkyhay]

I just wanted to say hi!  I'm in southwest Iowa so I'm curious where your located!   I didn't have any luck with Dr's locally and I ended up traveling to Colorado to have surgery  (he recently retired).  Good luck I hope you find the right dr!!

[selmaS]

  Mayo has a great Rep, but not for treating Chiari.


TENNESSEE

Dr. Stephanie Einhaus
Semmes Murphy Clinic
Mephis, TN

Dr. Carl Hampf
Baptist Hospital
Nashville, Tennessee
800-668-9410
[phone]

Dr Reid Thompson
Vanderbilt Hospital
Nashville, Tennessee

Dr. Cheng
Vanderbilt Hospital
Nashville, Tennessee

Dr. Samuel Hunter
Nashville, Tennessee

University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
[phone] (Office)

TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX

[Huskergirl1]

Thank you so much for the list!! So I guess my next question is what do I do now? Go to the neuro tomorrow and hope they understand or should I contact one of these doctors? I'm sorry to ask so many questions. I just have no idea what to do.

[Huskergirl1]

I also forgot to ask who are the doctors in TX and TN? Also how is the Mayo Clinic with this?

[Huskergirl1]

I was thinking I'd have to travel. Thanks for the help!

I've had an MRI done and so far that's all. I first thought this was my allergies! Did allergy testing (I've had bad allergies for 20 years). Then they sent me to an ENT who first thought I had balance issues and had a balance test done-which I do have balance issues. My brain doesn't communicate to my eyes correctly (another symptom of this?). Then they said let's do an MRI to make sure you don't have MS or a tumor. That's when they found this problem! I go to a neurologist tomorrow for the first time. I've spoken to a few doctors since the MRI and no one has ever heard of this and I keep getting the whole "wait until you see the neurologist" line.  I want to be prepared when I go and I've been doing a lot of research but it's still scary to hear something is wrong with your brain! I guess I just have to wait and see what tomorrow brings.

It's so nice to know that there are other people out there who know what it feels like and how miserable it can be! I'm so glad I found this forum!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

First let me say, what is mild....do your symptoms feel mild?...sigh....I hate the way Drs classify this condition due to the length of herniation...and not what is really going on and how it is affecting our overall health.

May I ask what testing was done?

Sorry we do not have any Drs for those states.....there are Drs in TX, and  TN.....more on the east coast. FL, NY.....