Is there room for one more?

[Nanna B]

Hi new friends,

I was wondering if I could hang with you a bit?

I had an MRI on Friday, dr called yesterday and said the report stated Chiari Malformation. He said he will talk to his neurology buddies and get back to me in a week or so. He said he doesn't know how bad it is. ??

Well, we are not waiting around, I am picking up the report and scans today and looking to get more information. second opinion. Health care in this area is not cutting edge and that is putting it nicely.

I knew about Chiari from this message board, I hang out in Fibromylgia section. My family is taking the news quite well and are very supportive.

Thanks for letting me chat, and looking forward to meeting you.

Nan
:)

[LIZARD]

Hey, Nan. :)

You need a neurosurgeon. Better yet, you need one well-versed in Chiari. A neurologist will be useless; trust me. They are not trained in matters of the brain that may require surgery, i.e. anything about the structure or any growths or malformations. Check out the following sites for info and referrals:

www.ASAP.org
www.WACMA.com
www.conquerchiari.org
www.chiarione.org


Good luck!

LIZARD :)

[Rozia]

Ditto on what Lizard said . Where do you live ??

[Nanna B]

I got my scans and report back.

The report states the cerebellar tonsils are 12mm below the level of the foramen magnum.

My husband has called the Cleveland Clinic. We are going to fax this report to a neurosurgeon who specializes in Fibro and ACM. I am hopeful. Then they will let us know if I am to be seen.

We do live near Chicago, are you familiar with any docs out there? The Chiari one web site has a doctor listed in Chicago, but when I tried to find him, he was in Wisconsin.

I must admit this is all a bit overwhelming. I really didn't sleep much last night.

Thanks
nan

[LIZARD]

We do live near Chicago, are you familiar with any docs out there?

Dr. David Frim is supposed to be one of the best in the nation for kids, but I don't know if he treats adults, too. Check those sites I gave you. You should be able to get some assistance there.


LIZARD :)

[Rozia]

This is the Dr. you want to get together with , he is a chiari expert :
Edward Benzel, MD.

http://www.clevelandclinic.org/neuroscience/directory/docs.asp?id=3197
Director, Spinal Disorders
Department of Neurosurgery
The Cleveland Clinic Foundation:
http://www.clevelandclinic.org/
Cleveland, Ohio

Also Dr. Frim In Chicago like Lizard said and yes he sees adults.
http://www.uchospitals.edu/physicians/david-frim.html

[Nanna B]

Rozia, Thank you!

You are not going to believe this, but Dr. Benzel is the neurosurgeon we faxed the report to. My husband called today, they said my report is in triage, they will read it and then call me. I am not sure if that will be today or tomorrow.

Thanks too for the info on Dr. Frim, I just assumed since he is at the Children's Hosp. that he was a Peds only doctor. I like the idea of Dr. Frim he is alot closer, plus I have read some other posts about him, he seems nice. It probably makes good sense to contact him as well.

Lizard and Rozia, thank you for your help. I truly appreciate it.

Take Care,
nan

[Rozia]

Yes like I said he (Frim)sees adults , manner of fact my friend here in town just got back from seeing him and she is in her 40s. You could see one and use the other for 2nd opinion . Do have to tell you that Dr. Benzel has no bedside manner, bu the is an expert. Keep us posted. Roz

[Nanna B]

Thanks,

We called Dr. Frim's office last week. They told us to send in MRI and symptoms list, he will review it and get back to us. So I am hopeful!

Have a nice day,
Nan

[krashleen]

Welcome to BT..sorry I haven't been around..had guests visiting.

What did the neurosurgeon say? Are you going to Dr Benzel or Dr Frim?

Krash