Chiari Online Support Group

Help!

ok,so im 23 years old, i was just diagnosed with Chiari Malformation though they've known about it for years (long story) I am terrified and filled with questions, it doesn't sit well in my stomach when my dr. tells me "you have brain matter slipping into your spinal canal" and some sort of brain surgery may be required? I've already had 1 brain surgery when I was 15, thought all my major health issues were fixed.....guess not :( I don't know much about Chiari only what dr's and others have told me. my symptoms include severe neck pain, sometimes so severe it causes a migrane,dizziness,blurred vision, recently I have fallen twice like just completely lost my balance and toppled over, is this because of chiari? what about side effects post surgery?? what are statistics on surgery? like how many people who have chiari will actually have to have surgery? will symptoms get worse if you don't have surgery? sorry guys im scared :(

Hi Scorpio92, firstly, a warm welcome to our community :-) I completely understand that you are scared right now. It is daunting to be given a diagnosis for a condition that you have no control over. What can be helpful is to spend some time learning as much as you can for yourself - check out the section we have here Chiari Info for Members in the menu bar - and reading up on others experiences and connecting with them, as you are doing.

Unfortunately the internet is very 'pro' surgery and often it seems to suggests that surgery is a 'cure'. Sadly it isn't and so the outcome for each person is highly individual .... you'll see that from our members stories.

Here is a link to the American Association of Neurological Surgeons site which answers many of your questions AANS - Chiari

I hope other members will post and offer you their support as well. Kindest, Jules

Welcome to Chiari…OR NOT! But at least we’ve got others who understand what we are going through and can offer guidance.
I was diagnosed in May of this year. I haven’t fallen yet but I’ve also had the use of a wheelchair and walker to help me maintain my stability. I do get so dizzy when I walk that I feel like I will pass out and fall over. I had 3 neuros tell me it was not the chiari but my symptoms have rapidly evolved and I finally have a neurologist that says this is all definitely chiari. I see a neueosurgeon on Tuesday.
My suggestion is to do your own research, but don’t focus on the negative and/or scary. Facts are facts but every situation has a positive, don’t let yourself forget that.
The neurosurgeon I’m seeing is in Houston at the Mischer Neuroscience Institute. If you google (I actually yahoo!!!) their name you will find a webinar from Dr Dong Kim on chiari. It’s a bit “dry” but informative and really helps me when I start to freak out.
Praying for good things for you!