Hi all - I'm wondering if anyone has experienced continual vertigo/dizziness with their chiari malformation and if surgery helped.
A little background: In July 2015 I noticed that sometimes the room would look like it is rocking. Over the span of a couple months it progressed to 24/7 continual rocking instead of momentary instances. Testing revealed unilateral vestibular hypfunction (a weakness in my right ear). I completed a few months of physical therapy which helped get me more confident in moving again and walking around. I can walk normally now, play tennis about once a week, and do strength training with a personal trainer 2-3 times a week. Even though I'm moving around just fine now, the rocking still persists. Meclizine has not calmed it, nor has acetazolamide. In December I was diagnosed with a 5mm chiari malformation. Cine study showed paucity of flow in the dorsal area. The neurosurgeon says she can do the decompression surgery but said it might not fix the rocking that I see. I don't get the 'chiari headache' that everyone talks about. I don't have a syrinx. My only symptoms are continual rocking/dizziness and I'm always tired.
As far as the specific neurosurgeon - she seems to have plenty of chiari experience. She's at a regional teaching hospital, is published in several journal articles on the topic, and performs at least 1-2 decompression surgeries each week. So I trust her as far as the actual procedure but I'm not sure how to consider the surgery if she doesn't think it will help the rocking/dizziness. She told me that the decision was up to me but I'm struggling with making the choice to have the surgery or not.
Any insight would be appreciated!
I have to agree with your doctor that surgery will not necessarily fix dizziness issues. For me, I did not have dizziness before my surgery but developed it after. My understanding is that surgery and anaesthetics stressed my central nervous stystem such that dizziness/balance issues emerged. No vestibular issues present. I had issues for nine months after surgery until I got a hold of some fab exercises that normalize brain integration. Poof! Good to go! I have posted them in the "Chiari info for Members" section. As mentioned, I did these post-surgery. Pre-surgery may not have the same quick and long-lasting effects. The exercises might be more of an ongoing thing that for me. Definitely worth a try rather than going through a major surgery that might not even fix your problem of dizziness. Give a shout if any questions
(also, I occasionally had nystagmus before surgery that had my world rocking - something to check)
Thank you for your response! So was your dizziness brought on/made worse by the movement described in the primitive reflexes section of the 'Chiari info for Members' post? Like did moving your head get the dizziness going or was it just always there? I've found that regardless of the type or frequency of movement my experience of the dizziness remains the same - always there, just hanging out. With as long as I've had it, sometimes I wonder if I would actually mourn for it once it's finally relieved some day, haha.
gabby jazzypants said:
I have to agree with your doctor that surgery will not necessarily fix dizziness issues. For me, I did not have dizziness before my surgery but developed it after. My understanding is that surgery and anaesthetics stressed my central nervous stystem such that dizziness/balance issues emerged. No vestibular issues present. I had issues for nine months after surgery until I got a hold of some fab exercises that normalize brain integration. Poof! Good to go! I have posted them in the "Chiari info for Members" section. As mentioned, I did these post-surgery. Pre-surgery may not have the same quick and long-lasting effects. The exercises might be more of an ongoing thing that for me. Definitely worth a try rather than going through a major surgery that might not even fix your problem of dizziness. Give a shout if any questions
(also, I occasionally had nystagmus before surgery that had my world rocking - something to check)
Dizziness/Balance or not feeling right in the world was there all the time and was aggravated by head movements. I am sure that it would take an adjustment period when it goes away but I think that you could handle it!