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AVM Survivors Network

Success story

AVM free 3 years post gamma knife surgery, There is life after AVM! Just wanted to share some positive news :slightly_smiling_face:

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That is fantastic news! Thanks for letting us know, wishing you all the best. Take Care, John.

That is great news!!! Thank you for sharing.

Thanks for sharing the positive news. I am going for gamma knife surgery (brain AVM) this Tuesday. I was told it takes 3 years to know if it has gone.

Congratulations to you. It is wonderful to hear success stories of others. I am one year post surgery for my AVM.

That is amazing to hear - congratulations! Just wondering how large was your AVM?? Enjoy living it up :slight_smile:

Good luck with Gamma Knife treatment! I am at the 2.5 year mark and am feeling quite apprehensive about my upcoming appointment. If you have any questions regarding the treatment dont hesitate to ask, the lead up is quite daunting.

I am a bit nervous. I have AVM in the right side of the brain and doctor said a few side effects-

  1. Seizures, 2. Left side paralysis, 3. May/ may not lose vision as it is near the optic nerve.
    I am worried, have you heard about memory loss. I was not told about it but it is worry and concern.
    Thanks for helping me and the community.
    Regards!

All the best hope all goes well with you.

@menk01

The different risks for an operation on a brain AVM are very specific to the location of the AVM because the brain has different functions in different locations. So the risks are related to those areas where you need to have your operation.

The doctors are obliged to tell you what the risks of intervention are, so you at least know what could be the worst outcome, though they most often do much better. In fact, I suppose it is much more often that an operation is successful, with few or no side effects, otherwise the operation would probably not be offered at all.

If you are really worried about the possible outcomes, you could talk to the doctor about the likelihood of any complications. Obviously, you would be looking for low percentage likelihoods of any side effects.

If you were in the UK, I would expect a doctor to be making it very clear if they felt the operation was more risky than leaving your AVM alone. I’ve not checked where you are but really I’d expect doctors anywhere to be careful to tell you if they don’t really recommend the operation.

For me, the balance was “do I feel more at risk with the AVM or more at risk through the operation?” I was quite convinced I needed the op, so I had to accept the risks involved. It’s not an easy choice, though. The only right choice is the one you are happiest to make.

Wishing you the best,

Richard

My AVM was on my left side and it did rupture. I was paralyzed on my right side for a month but after a lot of physical therapy and occupational therapy I recovered fine. I did have some permanent damage from my bleed. My right peripheral vision is damaged and my right eyesight isn’t the best. Left eye is 20/20. Sometimes I put a contact in my right eye just to make balanced. As for seizures have gone over 10 years without having a seizure but still stuck taking pills forever. And last is short term memory. I will always have that. I’m not that bad but if I’m having to do multitasking or if things at work change it’s a struggle.

Unfortunatley they have to cover their bases and provide worst case scenario based on where the AVM is. I was advised that there was the possibility that there could be deficits to my speech, this was scary considering I am a teacher and it could cost me my livelihood. I have not been told about memory loss, perhaps ask them on the day and hopefully they can clarify for you. Good luck, I will say a little prayer for you :slight_smile:

My AVM was on my left side with two blood vessels rupturing simultaneously. I thought that I was paralyzed (later found the results was a spasticity issue) on my right side and the spasticity remains, 38, almost 39 years, since the bleed occurred. I was told that whatever I regained the first year, post-AVM occurrence, would more than likely, be it. I have a drop-foot and abnormal gate on my right side; only gross (major) movement with my right hand with all movement of my right arm emanating from my shoulder. My right arm was not being used, atrophying. No issues with vision, but balance and concentration are issues that I’ve been battling my entire life. I have not had any seizures post-AVM, although the medical staff prescribed a medication that I had to take for three years post-AVM. Multitasking can be an issue for me and my memory seems to suffer a bit.

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Give thanks to the Lord! I am at 6.5 years after AVM operations. Back to normal without side effect

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Hello- I just want to let you know that I went for gamma knife surgery, with the grace of god everything went well so far no visible side effects. I hope my AVM will shrink in another 3 years and I would be cured.
It was scary initially with all known side effects but so far it’s good :slight_smile:
There is hope :slight_smile:

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Did you have any side effects? Did yours ever rupture? I was considering radiation but seems too long to wait.

This is great news… Congratulations… God bless!

Well done! None of this is easy, so it’s great you made up your mind what was right for you. Keep us informed of how you get on. It’s a long journey for gamma knife people and things seem to change from time to time, but you will not be alone.

Very best wishes,

Richard

Thankyou so much for sharing such joyous news! Praise the Lord for your healing​:pray:. I’m 6 years post AVM rupture , following 2 blasts of Gamma knife surgery, my AVM took 4 years to clear. I am now well adjusted to my right side vision loss, and terrible short term memory… All good now :grin: smilerDi

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Prays God that you took the plunge to get things working better! It AMAZING ME of what the medical technology is coming to now!