The new guy on the block

[PrimitiveGuy]

Hi everyone,
Just found out I have type 1 CM. From what I read that others have posted I am not so bad off. I get a headache on the left side of my head every once in a while. Sometimes it is a little worse then others but not real bad at this time. My question/concern is this...is this just the tip of the ice berg? Once you start getting symptoms will they just progress more and more? If your symptoms are not that bad is it better to get the surgery right away to avoid the bad symptoms or should you wait until things get worse?
Any help would be great.
Thanks

[WarriorMomma]

I was diagnozed in August 2008. Dealt with the symptoms as long as possible. Only now considering surgery. Can't tell you how the affects of the surgery will be, IF I do it. :D Hope that helps.

In response to:
If your symptoms are not that bad is it better to get the surgery right away to avoid the bad symptoms or should you wait until things get worse?
Any help would be great.

[zygy]

An accident caused mine to act up about five years ago.  For the longest time I just thought I had more headaches from the injury but as the frequency increased I knew something was getting worse.  The Chiari head pains in the past year were driving me crazy, they happen very easily and very often. I did have other things happening strangely enough at the same time but you never really know what is Chiari related.  It took me about 6 months to get from my PCP to a Neurologist, I learned quickly that the neurologist was not what I needed.  Then it takes additional time to see a Neurosurgeon... and the process continues!  I have finally found a wonderful Chiari Neurosurgeon and am now going to get the CINE MRI and the MRI of the spine.  

The best advice that this board gives is find a Neurosurgeon that deals with Chiari on a regular basis!! The faster you can do that, the easier it will be to track your progress.  Five years ago I dealt with the headaches just fine, now I am really thinking the surgery is starting to be a real option!  

I am where you are, I know I have it, I know it is not horrible but I don't want to end up with serious problems.  The Chiari Neurosurgeon told me that he is happy to do the surgery for me and felt I had an 80% chance to greatly lessen the Chiari headaches/pains.  I am now trying to figure out what I want to do.

[*Stormy*]

Welcome!

I really think it depends on the person...by the time mine was diagnosed it had already gone too far so it was only 3 months from my diagnosis to surgery for me.

I think if your symptoms are fairly mild you would be ok to wait as long as like Selma says, you don't have a major blockage. From that point on though, you want to make sure that you monitor it closely because in my case the symptoms did progress fairly rapidly once they made their appearance!

Good luck!
Carolyn

[selmaS]

Hi and welcome to the Chiari forum.

It is possible ur symptoms will remain just like this for quite some time...but, then again u could progress in to more symptoms rather quickly.

The best advice we can give u is to find a true chiari specialist and make sure u r tested for chiari related conditions......like tethered cord, syringomyelia, Ehlers danlos, Pseudotumor cerebri.

Depending on CSF flow and overcrowding and ur other symptoms the dr may choose to monitor u for a while.Not everyone will be a surgical candidate.

U should also watch ur activities so keep the possibility of triggering the symptoms to increase.

Glad to welcome u to the little family we have here, sorry the reason u had to seek us out.

"selma"