I’ve been reading your stories since last year but only decided to write now. I’m 2 months post op from my left cerebellar un ruptured avm. I’m sorry if my English is bad. I’m from Ecuador. My recovery has been very rough to say the least. I had 3 prior embolizations then a 16 hr surgery to remove a 5 cm avm so pretty agressive. As of now I have ataxia on my left side and very bad balance which prevents me from being on my own. I had surgery cause they found 2 intranidal aneurysms and a 3 cm venous aneurysm ready to burst this all has been very hard to say the least. Considering my lesion pre op I know the outcome could be worse so I’m thankful I’m avm free and alive just needed to vent with people who get it ….
Thank you for sharing your story.. You will feel well soon..2 months is early .. just stay patient and you will see the brain heal and your balance improve.. Give it some time.. We will pray for you
What a coincidence! I’m also from Ecuador, but I’ve been living in Germany for the past 9 years. My AVM was discovered last year by coincidence, and I had a CyberKnife treatment a few weeks after the diagnosis.
I’m really sorry to hear that you’re going through all of this, but you’re not alone. Recovery is a journey, and it takes time. Be patient with the process and, most importantly, with yourself
If you ever need to talk to someone in Spanish, feel free to send me a PM!
Hi! Thank you for sharing your story. I just wanted to tell you to hang in there and celebrate the small steps. I had a right cerebellum avm which ruptured in Dec 21. They removed it in Jan 22 but it left me with right sided weakness and tremor, bad balance, constant dizziness and double vision. I was bed bound. At times I really felt life was too hard and I would rather not be here. However nearly four years later I can walk unaided and can manage a few miles, have my driving license back and the dizziness has lessened. I no longer have constant nausea. The tremor has not changed. You learn to manage your symptoms and find ways around them. I have also learnt to accept what I can’t do and continue to strive for small improvements and celebrate them. 2 months in is still such early days for you, you have a lot of improvements to make and the brain, although slow, is a wonderful thing. Give it time, appreciate you are still here and enjoy the little things in life. Wishing you all the best in your recovery.
Hi @nathaliacbf ,
I also have balance problem, but not so heavy as yours. But unfortunately my AVM has ruptured 1,5 y ago, I’m fortunate that it is relatively small (5-6mm). I had Gamma Knife about 2 months ago, and hopefully it will help. The waiting for the effects is the worst however, I know I have to be patient.
I wanted to ask you - you’ve mentioned you had venous aneurysm, I thought aneurysms form on arteries. Did you mean DVA (Development Venous Anomaly)? I suppose not, but I wanted to double check. I’m asking as I also have DVA, but the docs say it is not dangerous and this is an anomaly.
this all has been very hard to say the least. Considering my lesion pre op I know the outcome could be worse so I’m thankful I’m avm free and alive just needed to vent with people who get it ….