request from NV

This week, I was diagnosed with Chiari 1 Malformation with 1.3 cm of inferior tonsillar herniation. My neurologist stated that this is significant and is sending me to a neurosurgeon to discuss surgery. I am just learning about this. While I am happy to be finally be diagnosed (correctly, I think), I am also concerned about surgery. There do not seem to be many options, yet there seem to be many opinions. Any suggestions on how to proceed so that I can be most informed to make good decisions would be helpful..I'm trying not to worry.

[selmaS]

First and foremost make sure the NS is a chiari expert-expert = 200 chiari surgeries per yr............what symptoms do u have?1.3 cm?......that's pretty big....Shane99 has had surgery and is well informed in this....I am sure he can give u some helpful suggestions.
remember there is no cure for chiari, only treatmenets to help manage with it.
please keep us updated.

Good luck
Godspeed
"selma"

[Shane99]

Hello and welcome to the boards. Look around and check out what other people are having issues with. You'll find many things you can relate to.

Educate yourself. Ask questions - if we know,  or even have an opinion :) - we'll get back to you. If we can't answer questions (in fact, even if we do) write them in a notebook and take them to your neurosurgeon. Also, write down whatever he/she says, come home and research. Doctors often use unfamiliar terms, so get him/her to spell such words.

And Selma was right - Number 1 rule: Make sure you see a Chiari Expert. It's amazing how many doctors have never even heard of Arnold-Chiari Malformation.

Okay, as for my opinion: I'm not a heath care professional, just someone that has been through it. I tend toward offering the advice of surgery.

I know that having an operation can be daunting and the whole idea of brain surgery can be especially scary. But . . .and I'm going to kind of step out on a limb here with this opinion . . . nothing else works as well.

One of the biggest problem with Chiari is actually the Syringomyelia that often goes along with it. At 13mm, you have a huge herniation. Doctors often start considering surgery at half that size.

I'm not sure how well informed you are, so let me give you a quick primer. First of; Chiari is not considered a life-threatening condition, but it is a life-changing one. Chiari Malformation is a disorder where the lower-back part of the brain (cerebellur tonsils) extend past your skull into your spine. This cause Syringomyelia - which is where the spinal fluids get constricted or stop flowing.

Chiari and Syringomyelia can cause paralysis, headaches, memory/concentration issues, dizziness/balance problems and severe pain. Along with scores of other symptoms, if not hundreds.

Not to scare you, but it's important to understand that there is no cure for Chiari! Non-surgical treatments usually (in my opionion) only help certain symptoms a little and only help for a short period of time.

Even surgery isn't a cure, but it has the best chance of stopping the symptoms and damages quickly and for the longest frame of time. Surgery can effectively stop the growth - not always - but often. And even if you have to have more surgery, it'll probably be years from now.

At 13mm, you probably have Syringomyelia. That is most likely why the doctor suggested you see a neurosurgeon about surgery. The longer you wait, the bigger the chance of paralysis. Have you had any problems with numbness in your limbs?

I know none of this falls under the catagory of "Good News", but it's very important that you take care of yourself and do what needs done.

Hope we helped, good luck and best wishes. Let us know what you decide. And feel free to ask other questions.