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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Re: Symptoms help
Sep 29, 2008
Hi Chiaripatient~

Welcome to the boards!! I hope we can be helful answering any questions and offering you some support while you get a better understanding of Chiari and its affects its having on your hubby.

Scout (and I didn't even know that is her real name!!) is correct in saying that the symptoms do vary from individuals. The most common being the headache. The heavy feelings in the legs were a big issue for me as well. But I had my 1st surgery in June and I must say my legs are 100% better.

Chiari patients can have a tethered cord, which is what I had. The spinal cord is being pulled very tight, dragging the brain down. This causes alot of lowerer extremity issues. For me, I had leg pain and weakness, it fealt like rubber bands around my legs. They just didn't move well, trouble walking stairs and bladder and bowel disfuntion.

Chiari can also cause a number of neurological symptoms. Here is a short list of symptoms below. As far as Dr's, you really need a chiari specialist that is well versed to treat your husband. I'll send along the top chiari specialist but I also have a list from each state. I'm terrible at Geography so if you let me know your surrounding states, I'll glady post more for you. But keep in mind, a good chiari specialist is worth the travel. I'm in MA and travel to The Chiari Instatute (TCI) in New York. Its a 4 hour trip but from what they say, we are the locals;) People travel from all over for their expert care.

Please let us know if we can help in any way;)

Take Care

Cindy


CHIARI SPECIALISTS

A * indicates a doctor that has been recommended or has expertise in the Chiari field.


* Dr. Ulrich Batzdorf
Neurosurgeon
Box 956901
Los Angeles 90095-6901
(ph) 310.825.5079



* Edward C. Benzel, MD
Chairman, Cleveland Clinic Spine Institute
The Cleveland Clinic Foundation
Cleveland, Ohio 44195
Neurosurgeon
Tel: (216) 445-5514



* The Chiari Institute
Paolo A. Bolognese, M.D.
Thomas H. Milhorat, M.D.
Et al
865 Northern Boulevard
Great Neck, NY 11021
Phone: (516) 570-4400
Fax: (516) 570-4444
The Chiari Institute



* Dr. Richard G. Ellenbogen
Neurological Surgery



* Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: (773) 702-2475
Office Fax: (773) 702-5234



* Dr. Arnold Menezes
Neurosurgeon
University of Iowa
Hospitals and Clinics
Iowa City, Iowa 52242
Phone 319-356-1616


* Dr. Edward Oldfield
Surgical Neurology Branch
NINDS
Building 10, Room 5D37
Bethesda, MD 20892-1414



* Dr. John Oro
1444 S. Potomac St. Suite 170
Aurora, CO 80012
Phone 303-481-0035
Fax 303-752-5240



* Dr. R. Michael Scott
Director of Pediatric Neurosurgery
300 Longwood Ave.
Boston, MA 02115


LIST OF SYMPTOMS

Headaches in the base of your head that worsen when bending, straining, laughing or crying

pain radiate behind your eyes

Neck stiffness~ pain radiates into shoulders /arms

Light sensitivity~ Blurred vision~ double visiion

Muscle Twitching

Pressure in ears~ ringing~ sensitivity

Difficulty swallowing~ Sleep apnea

heart palpitations~ dizziness

Tingling~ numbness~ burning in extremities~ weakness~ stiffness

Bladder and bowel disfunction

Fatigue... And theres many more





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