AVM Survivors Network

Ok but not OK

I had a hemorrhage in my cerebellum three months ago that has now been diagnosed as being caused by a pial fistula, a rare type of arterial malformation. I'm waiting for a call from the doctors, they are talking about me today in their conference. My initial symptoms were mild, trouble writing, double vision, headaches, dizziness. The symptoms seemed to resolve after a month. Lately I've had a few dizzy spells. They last a few minutes. I also sometimes feel like my head is floating off my body, wobbling like a balloon in a breeze. My body feels very balanced and I'm not falling down or stumbling around and it's not like my head is spinning. Does anyone else get this kind of feeling? I'm not sure why I'm posting this, just sharing I guess. It's feels good to write about it.

I have an AVM in my cerebellum and had first radiation treatment May 7 2015. I also experienced some of the same symptoms you have. Apparently I had a bleed that caused headaches, being off balance and vision problems. Hope you have a doctor who is caring and takes an interest in your case.

Hi both. I also have an AVM of the Cerebellum. But mine is unruptured and untreated so far. Treatment sounds awful and I'm scared of making things worse for myself. So I haven't pursued it yet. Not sure whether this is the right decision or not but time will tell! One of the most tragic things about AVM is that everyone seems to suffer a bit differently and have different symptoms.

You are right some are similar and some symptoms are different. Having an AVM has been life changing. I feel differently and no one seems to understand. This site has been a huge blessing hearing others have the same feelings and fears. Also since I can’t sleep it is a place to go and hear others and gain some hope.

My AVM is in the cerebellum also to deep for surgery so had Radiation May 7 , 2015. I have been through all the ct scans with and eith out contrast MRI s, MRAs, angiograms. After last MRI before radiation told by neurosurgeon that I would need another treatment of radiation because it was not as dense as they thought and would use a lower dose the first time.
Glad to have a place to vent, learn and hear from others.

Sounds like your symptoms are similar to mine. I may be facing radiation therapy. How did it go? Whatever you could tell me about the radiation itself would be great.

When I get double vision, the two images are separated up and down, not side to side, which is more common. Anyways, I wish you the best, thanks for sharing.

Hope all is well I have had 4 ruptures in my Cerebellum over the last 4.5 years and have just had it surgically removed. I experienced these sympoms when i was having a bleed and now that i have had surgery have some of these symptoms 24/7 more so the dizziness or mins at a time and hand\eye coordination issues on my left side only

Sorry to hear about your ruptures Phillip. I have heard that treatment of any kind can leave you with some deficits. Its one of the reasons my AVM hasn't been treated yet. It is unruptured and stable in terms of growth. I'm worried about making things worse for me. Of course, for you there was no choice as you were already having a bleed. Interesting that surgery was performed though as I thought the Cerebellum was too deep for this. Best wishes.

I have cerebellar ataxia, so I know. my vision problem went away as soon as my AVM was gone

Hello All: I had absolutely no symptoms when my AVM in the Cerebellum ruptured in November, 2014. I was told it was too close to my neck muscles to risk surgery. I had Gamma Knife Radiosurgery in April, 2015. Before the G.K. procedure I was dizzy and off balance, and since the G.K. procedure, I'm still dizzy at times and often off balance! It has however, gotten much better. I'm currently in Physical Therapy for the second time to try to improve my balance. It too has improved. My vision problems have pretty much cleared up. I used to be an avid reader. Since the bleed, I've been reading the same book for 13 months! I can't seem to focus for very long. I lose interest in a book mid-sentence. As bad as having an AVM is, I'm thankful to all of you sharing and caring. Let's keep the communication going!