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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi Clueless~

It can be very frightening and overwhelming learning that you have Chiari as well as SM (a syrinx). Educating yourself at this point is the best tool you can use in the care you will need. most general neurologists aren't familiar with chiari and the symptoms it can cause on our nervous symptoms. Having SM is a serious condition related to chiari and should be addressed as well.

If you are in New York and your insurance allows you to go to TCI (The chiari Institute) then by all means go!! They specialize in chiari as well as the related disorders and they know what they are doing. I had my 1st surgery there in June (tethered cord surgery)and I can't say enough about them. There, you will be in safe hands!!

All of the symptoms your describing can be chiari related. I have all of these as well. The biggest problem being the pressure and pain in the head and neck which radiates into my arms. It is constant and not much helps relieve my pain but to lie down.

Kyacking can be a dangerous sport with chiari. There is a big lists of don'ts as you'll learn. Any activity that can cause sudden jerks in your neck should be avoided. Contact sports, trampolines, amusement rides and so on. We really have to be careful not to cause ourselves further damage.

As far as surgery goes, it all depends on your condition, the progression and the symptoms your having. With SM it is more complicated. The CFS flow can be blocked from the herniation, obstructing the flow. That can cause the syrinx. If its large, it can cause permanant damage to the nerves. So please, find yourself a good neurosurgeon. If I can help in any way, feel free to shout out.

But know your not alone. And you'll get through this. Hang in there;)

Cindy





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