Karine's Chiari Page
Medical News
Chiari Malformation is a condition in which two parts of the brain, the brainstem and the cerebellum, are longer than normal and protrude down into the spinal canal. I was first diagnosed with this particular condition in 1994 when I was eleven years old.
At that time of my diagnosis, I was suffering from headaches, dizziness, nausea, and vomiting. An MRI was performed which revealed that I had a Chiari I malformation.
Following that diagnosis, I have had 6 surgeries.
My first surgery, a standard decompression and laminectomy, was in December of 1994. My second surgery, in July 1995, was for the removal of scar tissue and part of the cerebellar tonsils. A dural graft was also placed. My third surgery, in October 1995, was for the insertion of a pressure monitor.
My fourth surgery was performed in March 1999 by Dr. Milhorat, who removed a calcified pseudomeningocele. In other words, bone had grown around a pocket of fluid. Dr. Milhorat described it as looking like a chicken egg filled with water. He also performed a larger decompression by removing a 5x4 piece of occipital bone and placing a titanium plate over the opening. (This created more room for my brain.)
My fifth surgery was a cardiac ablation. I had this done because I developed an atrial flutter with 2:1 block along with runs of supraventricular tachycardia. (My heart beat really fast and I would become lightheaded and faint whenever I stood up.)
A few months before my ablation, my headaches became worse and they were occurring more frequently. My dizziness returned and I started vomiting again. After a year of trying Diamox and Daranide and undergoing 3 spinal taps, Dr. Milhorat and Dr. Kula decided that I needed to have a programmable shunt placed. This was my sixth surgery. I had the shunt placed in June 2002 at North Shore University Hospital by Dr. Bolognese and Dr. Milhorat.
I am now 24 years old and, after taking two years off to work in advertising, am in the process of applying to law school.
I still experience headaches and neck pain, but the symptoms are not as severe as they were before the surgery.
The shunt has definitely improved my symptoms and my way of life.
If you have any questions or comments, feel free to post a message or e-mail me privately. My e-mail link is at the bottom of the page.
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Tips for Dealing with the Headache and Neckache
- Do not stay in the same position for long periods of time without neck support.
- Get lots of sleep. Make sure to use a small, flat pillow. A large, fluffy one can put your neck out of alignment. I always use a down pillow. Also, elevating the head of the bed can help lower the pressure in your head.
- Stay on a low sodium diet. A diet high in salt raises the pressure in your head.
- Wear shoes with good cushioning and support. Try not to use high heels.
- Bending over also increases the pressure in your head. Try to keep your head upright when picking things up. Your head will thank you. :)
My Favorite Chiari and Syringomyelia Links
The World ACM Association
Chiari Malformation
INN - Chiari Malformation
What is the Chiari Malformation?
Mothers With Angels - Chiari Page
NINDS Chiari Malformation Information Page
Canadian Syringomyelia Network
American Syringomyelia Alliance Project
Syringomyelia Facts
Children with Spina Bifida: A Resource Page for Parents & Professionals
Welcome to March of Dimes
The Chiari Institute
Chiari Connection International