So I haven't done much research on chiari, but i've been reading what people have gone through. When I was told I had it, my neuro said he wasn't worried much about it. So I can be added to the list of many of you when it comes to that topic. Anyway, lately i've been feeling more unbalanced while walking and my right shoulder seems to hurt more each day. Just when I thought I was getting better it only gets worse. Is there anything that can be done about these feelings or do I have to wait until I go thru hardcore symptoms? I don't understand how many of you are able to go through all that you have gone thru. I don't have it as bad, yet (knock on wood), but you guys are so brave and strong willed. This is a HUGE change for me and it's hard to deal with. Sometimes I just want to give up and stay in bed. How do many of you deal with this?

I’m sorry to hear that your symptoms are getting worse:( Have you talked to a NS that specializes in Chiari? You should let them know it’s getting worse.

We all have a different combo of symtoms and they vary in severity. YOUR symptoms affect YOU, so they matter and are a challenge for you no matter the severity. None of us should suffer at any degree. So, my point is…you are stronger than you give yourself credit for. You have kept going because you are a fighter like the rest of us. Chiarians are some of the strongest people I’ve ever met…you included. Don’t get me wrong…I struggle with this everyday, but I just have to remember how strong I really am. The wonderful people here help a lot with this:)

Please talk to your doctor and keep us posted. You are NOT alone in this!


I couldn't have said it any better! Please talk to your neurologist about your progression of symptoms. My NL also said it was nothing to worry about and 2 months later, I had surgery! Try to find someone that specializes in Chiari or at least someone that has dealt with it before.

If you have any questions, concerns and/or comments, this is the place to post them! We are all hear to listen, help and provide support and encouragement.

Good luck and stay strong!!!

Crystal said it the best. The other thing is that we are all here for each other. Even though Chiari effects us differently we all feel like you do that at some point it is overwhelming but again as Crystal said Chiarians are strong and we do not usually give ourselves enough credit for tor the strength we have.

Nicolee also stated what I wanted here is the place to come, we all need a place to ask questions or voice our concerns or just to gripe. I have done all of them andfrom what I have learned I share as do the others.


I have totally been where you are. I can tell you 30% of the population has a Chiari Malformation , but only 17% of the 30% has problematic symptoms. People of Irish decent are also 30 more prone to have CM or other Spine issues. A lot of NL or NS take a wait and see attitude. I went to every kind of specialist known to man. Including a Balance and Ear Specialist. We tried Central Nervous System medication & fluid pills to balance the fluid in my ears and nothing worked. I even had a horrible test that timed the length that it took sound to get to my brain. I know you have what it takes to get through this!! We all started asking ourself the same questions that are running through your mind. I promise. Sometimes we do stay in bed for days. We are not always strong. We vent, We cry, We yell......but then we pick ourselves up.....just as you will and try to have the best life possible. When and if your symptoms get worse we will be here for you. I promise. You are not and never will be alone. I had no one that had even heard of CM until after my Decompression, Crainectomy & Laminectomy surgeries. You are already ahead of the curve. Please keep us updated on how you are doing.

Tracy Z.

I appreciate all your feedback and support. One of my friends recommended a neuro so I called today and made an appointment. It's not until next month, but to be honest I can't wait to hear new answers to questions that I have. Hopefully I can pull myself together and stay strong. Everyone's support is helping me take a positive step.Thanks.

I’m glad to hear you have an appointment:) Please let us know how it goes. We’ll be here for you in any way we can:)