Diagnosed

For the past 7 or so years I've had headaches and light headedness that I get from pretty much anything. I would tell my parents this and they would say "Drink more water." Finally I went to my doctor about it and he said the same thing. I nagged him about it more though and he referred me to a neurologist who had me go in for an MRI. He diagnosed me with  14 mm CM and finally I have answers to all of my crazy symptoms that seem to have no relation with one another. I can't decide if I've just learned to live with and ignore my pains or if I should get surgery.

I was wondering if this is a very progressive disorder and if later on in life (I'm 17 yrs old) it will get much worse? It feels like it is slowly becoming more of an annoyance and it's making things harder to do and enjoy. I'm not sure what to do about this. I'm also afraid if I get the surgery that it won't help much because I've seen some stories where people where unhappy with their surgery. Any advice on this?

[Bobo1o1]

CM affected your eyes but not your brain? Probably two unconnected problems.

[jenshead]

I'm in a similar boat.  A number of people on here have had surgery and I'm sure will offer their different perspective.

I've come down to two deciding factors.  1) If this gets worse, or if I am told there is significant risk for it to get worse, I will consider surgery.  2) Right now, 80% of my problems are controlled with medication.  As long as that remains the case, I'd rather deal with a few problems than have someone cut into my skull.  This surgery isn't just some minor procedure!

For it getting worse, my understanding is that it may or may not, and that is why you should have annual scans done and never dismiss a new symptom.

[thrice3]

Jen, that's a good way of thinking about the surgery. Thanks for the input! I have always hated taking medication though so right now I am fine without it but if it gets worse I guess I will just have to suck it up and take some. I'm about to go out and buy a heating pad for my shoulders and neck so hopefully that will help some.

[thrice3]

@Bobo101 I'm not sure what you mean. I don't have problems with my eyes.

[selmaS]

Hi and welcome to the Chiari forum.

I want to apologize, we get people from other forums that respond and have no knowledge of chiari, so when u get replies u do not understand, this is most likely y.

As for ur concerns regarding surgery, u need to see a true chiari specialist....let them do the testing to see how chiari is affecting ur overall health.
Many that have bad recoveries can be associated with, how long it took until they got to surgery and how affected they and their nerves were prior....so they could have lasting effects.
And another reason is going with Drs that promise to "cure" or "fix" u...that is not possible, once u have chiari u always have chiari...surgery is a means to help slow progression and restore flow....and hopefully lessen symptoms.

Unfortunately we all respond diff to the surgery, and that can be a factor as well, with ne surgery there r risks, and possible side effects not everyone will experience, but some will....ur Dr will tell u if the benefits out weight the risks.

U need to know if u have a CSF obstruction and over crowding...u need to know how it is affecting ur over all health...not everyone will have debilitating symptoms to indicate how they r being affected and not all those with awful symptoms have a need for surgery.....

I had the surgery, but made sure I went with a NS that is well educated on chiari and his practice is all chiari and chiari related conditions....after seeing a Dr that knows so much about this condition, it is easier to make a decision as to how to move forward.

"selma"

[thrice3]

Thanks Selma! I am actually going to get an MRI next week to see if I have a CSF obstruction. I think my parents may decide to take me to a specialist. I hope so because I'd like to be completely evaluated and find if I need to get surgery or if it isn't too bad. Progression is the last thing I want.

[selmaS]

  What u do, activity wise can affect how and when this may progress...so be sure to avoid things that ur Dr  has said to...we do have a list here-http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

But u have to listen to ur body, do things in moderation and get as much rest as possible.

Keep a journal of ur symptoms it is a good way to see if u have progression going on when u r not having MRI's.

  "selma"