Really getting disgusted

[jtjmom]

Boy, am I glad to see everyone back! Thrilled to have BT back, not thrilled to need it, just like everyone else... lol...

Liz, my 12 year old son also has autism, high functioning, and I totally agree wtih you about questioning how they would accurately evaluate pain in an autistic person. Just my two cents...

Does anyone know of an nsg anywhere in the midwest that knows which end is up with Chiari and is not a ped? I'm in the middle of IL, and the only reputable Chiari nsg I can really locate is in Chicago, and is pediatric.

My primary and my nsg both say Chiari is asymptomatic until it is severly herniated. We know this is not true. When I visited each of them, presenting my symptoms, they both told me I am not havng those symptoms. It's all in my head because I researched the diagnosis, and because I'm more educated now, I'm giving myself psychosomatic symptoms. Grrr... :mad: :mad: :mad:

I need to find someone who knows what they're talking about, and more importantly, will listen to me instead of telling me I'm making all of this up!

*An eerie silence emanates from the computer after my head explodes*

Sorry to vent, just hoping against all hopes that someone knows someone out there who can help.

Love all of you!

Danielle

[LIZARD]

(((((((((((((((((Danielle)))))))))))))))))))))). :(

I'm so sorry you're going through this, hon'. You might find a recommendation at one of the following sites:

www.wacma.com
www.ASAP.org
www.Chiarione.org
www.conquerchiari.org

Good luck!

LIZARD :)

[Pat Connerty]

There is a doctor at Hinsdale Hospital, in Hinsdale, IL, I believe the name is Dr. Napolitano, who operated on my niece for ACM.

Also, Loyola Hospital in Maywood had a wonderful neuro by the name of Dr. John Shea but I do not know if he is still there or not.

Dr. Shea performed surgery on my husband who had ACM and is doing very well except for some aches and pains occasionally. Hope this helps.

[razzle51]

Pat are these other drs in Ill too.

[jgoldie]

I can't say enough about the Chiari Institue in Great Neck NY, they do more decompression surgeries there than anywhere in the world, (more than 1 per day) and they use the most advanced surgical technique. Don't waste time anywhere else. All other neurologists that I have encountered STILL use outdated 'old school' means of evaluating Chiari 1 Malformation.
good luck

[Mayzoo]

Can you e-mail the Dr Frim in Illimois and ask for an adult NSG refferal? Since he runs in those circles--I would think he would be able to refer you to a couple adult NSG's. Just a thought........http://www.davidfrim.yourmd.com/

mayzoo

[pinkflipflops]

My husband had Chiari surgery a year and a half ago. His mom has had 6 surgeries total!! The reason for all the surgeries was because she went to a nsg in Chicago (we live close and it was less expensive) who was suppose to be excellent and well recommended and this nsg messed her up!!! She ended up going to NY to the Chiari Institute to see Dr. Thomas H. Milhorat & Paolo A. Bolognese, M.D. These doctors are rated the best in the world. Dr. Milhorat is called the "grandfather" of chiari surgery. When my husband ended up needing the surgery too, my mother and father in law wouldn't allow him to go anywhere else. These doctors are amazing and I never ever would send him anywhere else. His mom almost died! Please if you are going to have a surgery or even think about it please this is the best way to go. The doctors are soo helpful and they will not do surgery unless they are sure they can help you. Check out the website

http://www.northshorelij.com/default.cfm?id=1&oTopID=0

[pinkflipflops]

im sorry here is the website: this is the best place to go

http://www.northshorelij.com/body.cfm?ID=6407

[roz1950]

There are other experts to go to , that may be closer to you. Not alot of people can afford to go to NY . And they only take out of network insurance

[pinkflipflops]

I agree that their are other experts to go to, but like someone said a few comments up, they are the most advanced with their techniques and do more surgerys than any other surgeon does. I do agree that it is pricey, but we are talking about brain surgery and you pay for what you get honestly...

[roz1950]

well I had surgery in Sioux city Iowa .And I would recommend my dr.; to anyone . He was fabulous and veryu knowledgeable in Chiari . Yes but sadly in some cases you pay for what you get . You really have to do your homework on this . Best wishes

[maridane]

surgeons out there, anyone can do a decompression and a one size hole fits everyone which we all know or should know that these are the ones you definitley want to stay away from. TCI and Dr. Milhorat and Dr. Bolognese are the best in the business and the advances they are making every day are astounding to say the least. They also have some very good videos you can watch on their website. Go to:
www.thechiariinstitute.com

Roz, not wanting to disagree with you but:

And they only take out of network insurance is absolutely not correct.

They will take whatever your insurance pays, they just do not mark any thing off like other doctors. My daughter got her insurance to pay them for her surgery as if they were in her network. Once they realized that no one wanted to do her surgery they had no problem paying it as in network. She still had to pay quite a bit, but not as much as she would have if it were considered as out of network. The only insurance that they DO take is Medicare and they do accept it like other docs do regular insurance so whatever medicare will pay, that they deem customary and allowable is accepted.... But only with medicare do they do this........

Hope that you can get things worked out to see the best in the business as they are very much worth it.. They are very revolutionary when it comes to chiari and the other things that seem to be assoiciated with it. Such as Tethered Cord SYndrome, Ehlos Danlos Syndrome, Cervical Instability etc:
Marilyn

[roz1950]

I thought they were a out-of-network facility . They accept out of network payments from Insurance companies . then patients pay the balance . thats what I meant to say. Sorry been pre occupied latly

Oh lord I said it again . sorry , listen to Marilyn she knows what she is talking about