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AVM Survivors Network

Cerebellar avm

Lisa had her bleed 18 months ago. She has been back home for 5 months now after 7 months rehab. Home has been good for her, her nights in hospital were traumatic, here she’s got me, Bonbon the dog, Iso and Lilly the cats. She had gamma knife treatment in September, everything went well. Recovery is slow, so heartbreakingly slow and painful . But I get to see daily little miracles, I keep telling Lisa how far she’s gone since that terrible day. Such a long way to go, what a struggle. I have talked to Lisa about AVM survivors, I know she would appreciate a few words of support, she has double vision and can’t use her right hand well so I’ll be her secretary…all the best to everyone x

I wish you the best too, cecile72, and I would be happy to send Lisa a supportive message.

I had an AVM in my cerebellum that was removed at the end of 2006. Double vision was an after effect of the surgery in my case. They make prisms that help with the double vision, but you probably already know that. Before the surgery I had 20/20 vision, so I had a hard time with that, but it did help. I just had surgery to correct the double vision just one or two years ago but I still wear glasses (they are no longer prisms but the poor vision is probably just an age thing).

I realize that it may feel as though it has been a long time (especially for you), but it is a painfully slow process as you pointed out. It does suck, there's no getting around that, but in my experience patience and a healthy sense of humor can help immensely. Plus, my personal experience has been that this site can be helpful in trying to navigate the journey. There is a sub group here specifically for people with Cerebellar AVMs at http://www.avmsurvivors.org/group/avms-of-the-cerebellum and you can probably find people on a similar journey as Lisa. You and Lisa are not alone in this. Best of luck to both you and Lisa and btw, I was right-handed. Guess which arm is now numb... :)

My husband had the rupture 7 months ago. He has been home just over 3 weeks. (6 months in rehab and hospitals).
Home has been wonderful, mostly because sleeping is so much better. And because I don't have to commute 3hrs a day.
I see little improvements daily. I feel sometimes that I am not pushing him enough. But then he does something small, like push his dishes in the sink, and I know there is still so much healing happening.
Im sending all kinds of love and support your way!

My doctor said. “Baby steps until one day strides.” The steps do take time but are so worth it when you can all of a sudden do something that you couldn’t the day before. This still happens to me! Being home and snuggling with, in my case
Serendipity, my dog, is the best. I’m glad you have soft fur to run your hands across. Keep going- you are stronger than you know!

My rupture was back in 2011. I had 2x vision as a result of the brain surgery. I have had a surgery, but it has only reduced it. I also have developed nystagmus. Prisms have not been successful yet. The nystagmus doesn't help. The constant dizziness is difficult, as is the 2x vision.

I lost my career, which was the achievement of a life-long dream. Sadly, I did not insure myself properly. Not because I didn't think it could happen to me, but it just didn't occur to me in time. Remind her that things could be much more difficult. She has you, I have no spouse. I understand now that I needed as much control over my life as I could. A wife was not helpful in that area.

Again, while things aren't great, they will get better. It just takes time. A lot of time.

Greg

Hey Greg, My rupture happened in May of 2011. After trying the prisms, I had surgery for the double vision in August of 2012. I have nystagmus and understand your frustration. I agree with your ending; time has been healing for me.