Cerebellar Tonsillar Ectopia

Has anyone ever had to deal with this?

About 6 year ago, I had a MRI that showed herniation into my foramen magnum causing a slew of problems.
Last year, I did another (to monitor) and it hadn't changed.
Last week, MRI #3 showed increased herniation...and now it's time to start talking to neurologists about treatment options. As far as I can tell, the only option is the knife.

There is some wild info about it, stating that as many as 1/1000 can have this, but rarely do people have symptoms.

With something so "common" hopefully a few of you know a thing or two about it.

This may sound like a dumb question, but what's the severity at this point bro?

I have been reading up on it and it seems that the only option is usually to operate. Hope it all goes well either way man.

Quote:

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Originally Posted by jposey

Sorry you have to deal with this man, I worked in a neuro icu for many years and we had several patients come through that had to be worked on for this. Its kinda like a disc decompression but instead the little lobes on the back of your brain hanging like tonsils, are causing the compression instead, blocking csf flow. The cases we saw were severe but even the majority of those patients did well after the surgery. Almost all the ones I saw ended up with a shunt to help with the csf flow afterwards. But these were the most critical of patients. I hope this gets better for you soon. Anytime they talk about poking on your brain it can get pretty scary. I think most the information you find on the web concludes good results with surgery.
Wishing you well with this. Hope I didn't make the worry worse.

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really good info, thank you.
it effects everyone different, so im not too sure of severity to be honest. we shall find out soon :)

I hope everything works out for you homie. Positive vibes.

Best wishes, Im sure you'll be just fine.

When you talk about any spine/brain surgery, be sure you really sit down and evaluate the situation. Once they open you up, there is no reset button, no revisions, not much of anything at all that they do that can be un-done. In life or death situations its easier to make these decisions. What sucks so bad for this is that with herniations, things turn real bad, real quick, and there is not much that can be done once they do turn bad (at least from herniations I've seen in my unit.)

Are you having any symptoms? Are there any /have you tried to make any lifestyle changes to help decrease ICP (monitor blood pressure, decrease strenuous activity which unfortunately might include jiu-jitsu)? If you do have surgery, what are you hoping to get out of it that you only be able to achieve with the surgery?

Talk to as many neurosurgeons as you can.