Possible Chiari?

[bluebelle25]

Hi all!

I have had some symptoms over the years that have led me to question a possible Chiari diagnosis. I am 25, and the first of them started when I was about 19. I had extreme nausea, and I was vomiting a lot. As of right now, these symptoms have not been explained. I am still experiencing them almost 7 years later. I had a GI workup this past year, and nothing physical was found. The other big symptom is headaches. I have them literally every day. Some days are worse than others, and medication often does not help much, if at all. I had an MRI a few years ago for the headaches, but the MRI machine was malfunctioning and they elected not to redo it. I have had intermittent problems with balance, and will sometimes drift off to one side while I am walking and walk into things. I also have periods of dizziness. There are other times where I have odd dizzy/lightheaded/stiff spells-if I lie on my stomach and lift myself up (like if I were to try to read while on my stomach), I feel dizzy and lightheaded and my neck hurts. This started in the past few years, and wasn't a problem when I was younger. I also have issues with insomnia which have been getting worse. My legs and arms often fall asleep as well. Is this something I should look into?

[selmaS]

  Hi and welcome to the Chiari forum.

I would say yes, do find out what it is....with Chiari symptoms cycle and flare...so you can go long periods feeling fine, to feeling awful.....while some symptoms we consider "normal" feelings as we have always had them....so it can be difficult to know when symptoms actually started.

If you need help locating a Chiari specialist let me know  I will try and post a list for your area.

Just know you are not alone.

[bluebelle25]

Hi! Thanks so much for your response! I live in MA, so anyone you can point me to in my area would be great. Does the specialist have to be a neurologist, or something similar?

[selmaS]

  A NL (neurologist) will DX your issues/conditions... a NS (neurosurgeon) treats...you will want a true Chiari specialist this is a NS that focus's on Chiari and ALL related conditions and nothing else.....they have the experience you will deff want your Dr to have....the Drs on the list may not be true Chiari specialists but have treated for it.....our list is compiled by the members of Drs they have been to, treated by and liked....you will need to educate yourself so you will know when you have found the right Dr  for you.

Again this list is not a referral nor an endorsement....just a starting place for you to research Drs....many of us go out of state and travel quite a bit to get to the right Dr..-

MASSACHUSETTS

Dr William Butler
Mass General Hospital
Boston, MA

Jean-Valery Coumans, MD
Mass General Hospital
15 Parkman St.
Boston, MA 02114
Tel: [phone]
Fax: [phone]

Dr. Carl Heilman NS
Tufts Medical Center
Boston, MA