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AVM Survivors Network

Two years

Two years ago today I had an embolization and craniotomy to remove the avm in my cerebellum. It’s been a long haul. Lots of balance issues, dizziness and nausea. But now I’m celebrating just how far I have come. I’m thankful to be completely independent. Just need to ignore the lightheaded , loopiness and move on with my life.
We had a great stretch of weather a few weeks ago that I was calling “bonus summer”. Well, now I’m calling my survival “bonus life”
Best of luck to everyone
Carol

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Congratulations, 2 years is something to celebrate for sure.
I wouldn’t say ‘…learn to ignore…’ symptoms is a good thing, but rather learn to manage symptoms. Even years on I’m still symptomatic, but I’ve learned which symptoms are ‘normal’ (as if any of them are normal) and which ones I need to be aware of.
Some can be managed with medications and lifestyle changes, but then for those that can’t be managed or I see a progression of symptoms, then it’s time to act.
Well that’s what I do anyways.

Merl from the Moderator Support Team

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Yes you have some very good points there.
I really was referring more to accepting the new normal. For me there are vestibular issues that I need to ignore and just keep going. That makes my brain accommodate, if I rest too much they get worse. Really annoying.
Carol

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Great news!!!

Awesome news for sure! Like you my AVM is in my Cerebellum and I had Gamma Knife Radiation as that was the only option for me. It’s been 5 years now and I’m still dealing with balance problems, etc, but I thank God that I’m still here. I’m not complaining. I’m just happy to still be here! Wishing you the best of everything.

Sharon D…

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Hello there, Carol/Cancrd,

You DO have something to celebrate. I had a cerebellar AVM that ruptured 26 years ago. Immediate surgery was the only option. And, I LIVED! VERY rare at that time. I understand your symptoms! You will adapt and learn to manage them over time. All of it will lessen over the years, although some will persist. For instance, the balance issues… Like you, I cannot participate in activities that demand quick movement, bending over, twisting, running… But, I did discover hula and it is a part of my life. It is my physical therapy (balance, co-ordination) and cognitive therapy (memorization). And, it is fun!

I refer to my anniversary date as my “Re-birthday”. ‘Truly a gift that you and I understand.

Happy Re-birthday!
:smiling_face_with_three_hearts:

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Hi Carol - I’m going on 4 yrs this October with the removal of my AVM very close to the brain stem. I have balance issues too but very thankful for the finding and removal. I also deal with being nauseated daily but have become us to this fact. Keep up the good work and time will heal all.
Joan

Thanks. I’m definitely sticking with it. At the two year angiogram I asked the surgeon about more recovery and he said it’s possible. The cerebellum is particularly good at compensating for any damage. So I will carry on and hope for more.
Carol

Hey, how did that little piece of birthday cake get there beside my name. Thanks to whoever did that. Makes me smile :sunglasses:
Carol