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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Re: Need advice
Jul 27, 2008
Hi Kelli~

I'm glad our responses were helpful in helping you not feel so alone. The MS board was a heaven sent for me. Bearygood and a few others helped me tremendously when I was in limbo searching for answers. They gave me the strength not to give up and search for answers.

The symptoms are very similiar to MS so many people end up there or actually mis diagnosed with MS. Its very sad that so many others are suffering and don't know why.

As far as learning more on the procedure, you'll have to do some searching. There are chiari groups out there but I don't think I'm allowed to share any links here. I happened to stumbel across one and they were very helpful to me.

I can share what I know of the procedure but as I said, I haven't had this done myself. The back of the skull is too small so the brain is being squished. That is why the tonsils sink down. So they open the back of the head and take out a small section of the skull to take the pressure off of the nerves that are being squished.

This also affects the CFS flow surrounding our brain. They have a Cine MRI which helps see if there is a blockage of CFS flow. A chiari specialist will know about this test. I have little flow in the back of my skull. The CFS flow acts as a cushion to the brain and protects and nourishes the brain as well. So this flow is important to a healthy brain and nervous system.

Alot of people experience dizzy spells and balance problems. So a sense of humor when we stumble is a good thing. LOL. I always tell my family I laugh because if I didn't laugh, I'd cry. Here's some of the things people experience:

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 vision

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

The Chiari institute has a questionaire to fill out and its amazing when I went through the list how many things I had that I just thought was normal.

Having the surgery done, you'll definately have to get some outside help. Do you have friends close by that can help? or maybe your hubby can arrange a vacation to be there for you. I know this is difficult and I was having trouble coordinating everything but I finally found a way and you will too.

As far as progression goes, if your nerves are being affected, the sooner you intervine the better. If left untreated, you can have permanant nerve damage. My dr says the best results are if you take action within 2 years of the onset of major symptoms. So you have time to plan.

As far as other surgeries, alot of chiari patients have related disorders as well. I suggest you look into the Chiari Institute. You can get alot of info there.

Keep your chin up and know your not alone. We're here if you need anything!!

Take care

Cindy





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