I am also new to this site. In 2009 I had an AVM on my cerebellum which did bleed and I had a failed embolisation followed by a craniotomy which completely removed the AVM.
I spent a long time in rehab and still have some balance issues and weakness.
In the past week I have been quite dizzy, collapsed twice and had some headaches, but was quite well prior to this. I am waiting to see my neurologist on Thursday,has anyone experienced any post op problems out of the blue?
Hi Marina,
Is your neurologist aware you're having these new symptoms & can he/she see you sooner?
If not, maybe the ER?
Marina I do still have issues with dizziness. There was a time a couple of months ago that it got really bad seemingly out of the blue. It was also constant, which was new for me. It was 2 years after my bleed/crani. My neurologist thought it may be related to a seizure disorder. It is possible to develop seizures several years after surgery. Your neurologist may want to check this. This wasn't the case with me.I had a whole series of tests and established that I do appear to be having seizures. There was no explanation as to why my dizziness had gotten worse. I did see a "balance therepist" at my neurology center. This helped some but the problem kind of resolved itself over time. I'm not dizzy constantly anymore but it definitely still comes and goes. Good luck to you. I know being dizzy is not much fun!
Patti's giving you some good advice. Dizziness and collapsing can be as simple as dehydration, or they can be very serious. Have you tried leaving a message for your neurologist to call you back? The safest thing would be to go to the ER if your neurologist can't talk to you on the phone. I know the ER can be a terrible time-waster, but when you have a serious medical history, I always suggest erring on the side of caution. If you happen to catch something early enough to treat it, you'll be so glad you went.
One possible explanation (and of course there are many that I wouldn't have a clue about!) is some light seizure activity. It can take years to develop, and it can show up in many forms, like staring spells, sleep disturbance, or dizziness. Of course that's just one of many possibilities--I'm only bringing it up so you can ask about it if your neurologist is stumped, which happens more often than we'd like, especially where seizures are involved.
Keep us posted on how you're doing!
Thanks for all your replies, I have been to the ER and all they did was reassure me that I hadn't had a bleed, to be honest, I am not sure the doctor I saw had ever seen someone with an AVM.
It is hard to know what is going on sometimes, I was given the impression that it would all be over when I had the surgery but it seems hard to recover from.
I will let you know what they say, thanks for your suggestions, I have found that it is not easy ask regular doctors about this, they have no idea, so this forum is a great idea.
Could it be related to medications? Are you taking anything for seizures? Some of the medications could cause dizzy and weakness.
Hey MarinaWC!!! Another possibility is an ear infection. I also still have balance issues after my bleed/surgery in 2000. I have noticed that any problem with my ears (or sinuses) no matter how slight seem to really throw off my balance. Worth asking the doc about...