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AVM Survivors Network

Survivor-17 years

Welcome to the site a remarkable comeback from an AVM burst! … I’m glad mine happened after I was 50 and had established a family and career.

Welcome to our community! I echo Mike, great to hear where you are. It is great you are here with us! Take Care, John.

Thanks for the welcome!

Thanks!

Welcome to the family and so happy you have been living your best life survivor… God bless!

What John said…

Thank you!

You inspire me to recover and pick up where I left off in my life aka school, job, etc :slight_smile:

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You can do it!! Its hard sometimes but you can do it!

Wonderful! Heartening! And how nice that your career heals and uplifts others. Beautiful.

Really great to hear you’re doing okay! Mine [frontal lobe] burst at 17, with smashing headache, and straight to long surgery. I’m now 58, an IT Project Manager. Just occasional nocturnal epilepsy, but eternally thankful I’m okay, as I’m sure you are! Hopefully our stories can give encouragement all here.

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Welcome to the tribe, feel free to post any questions you would like to ask regarding your condition and we’ll try our best to answer them.

Thank you

Congrats on your success! Karla.I’m wondering what the side effects you still have now.
Thanks for sharing.

Hi Zoe. My AVM was in the part of my brain where our nausea is controlled. I have vertigo daily and loose my balance on occasion (not so noticeable anymore). In the mornings I often wake up with a slight headache that goes away after some Excedrin (I think from lying down all night). Minor side effects that I am fortunate to live with. I stay hydrated and exercise and try to eat healthy and this helps too. Most importantly I DONT STRESS OUT…after what I went through nothing is that bad!! Good luck and let me know if you have any more ??.

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Thanks for sharing your experience, Karla. I got a Gamma Knife treatment exactly two years ago. Now I have some balance problems. I join a yoga class and take long walks. I hope my 0.7cm AVM will be obliterated through the gamma knife treatment in a period of about three years.

I’m wondering how long did it take your AVM obliterated, and were you told about these long-term side effects of the Gamma Knife treatment. I assume you got such treatment.

Enjoy your life free of AVM!

Hi Zoe I never had gamma knife. My AVM burst. I didn’t even know I had it. No time for gamma. It burst and I underwent emergency surgery to embolize… way beyond gamma knife. My story is much different than what I read. I have only meet 2 people after a burst…

Surgery is a fast way to get rid of the AVM, but I didn’t know there are some long-term side effects after the surgery. My AVM is in a too deep location to be operated so the Grammar Knife is my option. Does your slight headache occur when you work with the computer or on the Internet too long?

Hi Zoe. I do get a headache if I am looking at my phone for too long. It tires my eyes and I can feel the pressure in my head. I have to turn it off if I feel this way and rest. it is so important to keep rested and stress free. Easy to say but that is the perfect prescription. A little marijuana helps too:)

Hi Karla, If you change your phone in night mode, which doesn’t emit blue light, and then your eyes may feel better when you look at the phone.