AVM Recovery!

Hi everyone. AVM's were discovered in my brain back in April after I was suffering terrible headaches. They embolized them but recently, through an angiogram, found that there's still a residual AVM in there and doctors wish to remove it through radiation. When I was recovering from my first AVM procedure back in April, in the ICU, I got pneumonia, which complicated things a bit. In fact, doctors thought I was not going to make it and even told my wife, more than twice, that I had less than 1% of chances to survive. Well, here I am, still living and kicking it so please don't be discouraged. You'll be fine!!!!!! After my initial operation, I lost 45-50 lbs., the ability to walk and the use of my left arm but I'm slowly recovering through PT & OT and wanted to know if anyone in this Survivors Network has gone through the same experience. I'm in good spirits and my ultimate goal is to be able to play soccer again. I know everyone is different but I wanted some rough ideas on how long it took you, with my same consequences, to be back to near normal. Anyway, my message to you all is: DO NOT BELIEVE EVERYTHING THAT DOCTORS TELL YOU OR YOUR RELATIVES. BELIEVE IN YOURSELF. PERIOD!!!!!! GOOD LUCK EVERYONE AND SPEEDY RECOVERY TO THOSE LIKE ME IN THAT PROCESS. THINGS CAN ONLY GET BETTER FOR ALL OF US!!!!!!!

Hi Nando,

So happy for you that you're making it through everything you've been through. You've had a rough road. Keep fighting, and working and making progress in your recovery!

You are so right - the doctors we see can know a lot, and do so much to help us, but we do need to believe in ourselves too, and sometimes we can't believe everything we're told. We have to know our own strength and abilities and show people (including the doctors) what we're made of.

Best to you,

Tori

When I had my AVM bleed 22 years ago the doctors told my parents at one point that I had less than 2 hours to live. I had just turned 30 years old. I also was paralyzed on the left side of my body. I was very fortunate that I regained movement on my left side. I was able to return to work in a year but it took another full year before I had my full stamina back. You might want to look up Phil Walker's page. He had his stroke a year ago and he is a bodybuilder. He may have some helpful hints for your recovery. I will be praying for you!

Hi Nando,

Love your spirit and am happy that you are recovering. May your recovery continue.

Take care,

Debbie

The doctor told my husband to call my family to say their goodbyes - that was also in April this year. They gave me very little chance of surviving brain surgery to remove the AVM and a trillion to one that I would be functional. Well, I'm not completely 100%, but pretty darn close. I still have balance and depth perception issues, but even if I never get any better, it's a lot better to be alive and have a few little issues than the alternative. Hope you do well. Keep up the physical therapy exercises, have hope, be patient and I'll bet you can climb back, too. But do be patient... it does take some time. I feel I will get there eventually, hopefully you will too.

Thank you. Kat. That's truly inspirational from your part,

Kat Sanders said:

The doctor told my husband to call my family to say their goodbyes - that was also in April this year. They gave me very little chance of surviving brain surgery to remove the AVM and a trillion to one that I would be functional. Well, I'm not completely 100%, but pretty darn close. I still have balance and depth perception issues, but even if I never get any better, it's a lot better to be alive and have a few little issues than the alternative. Hope you do well. Keep up the physical therapy exercises, have hope, be patient and I'll bet you can climb back, too. But do be patient... it does take some time. I feel I will get there eventually, hopefully you will too.

Thank you. I'll keep you in mind when I step on that soccer pitch again. Doctors and other people who said I wouldn't live or will have to use an oxygen tank for the rest of my life will get my dirty socks and underpants from my first soccer game but you'll be in my thoughts.

Deb C. said:

Hi Nando,

Love your spirit and am happy that you are recovering. May your recovery continue.

Take care,

Debbie

Great story. I'm happy I'm not alone on this one. I have a wonderful family *wife and baby girl) and they're my rock! Thank you for sharing your amazing story with me.

Barbara Hanson said:

When I had my AVM bleed 22 years ago the doctors told my parents at one point that I had less than 2 hours to live. I had just turned 30 years old. I also was paralyzed on the left side of my body. I was very fortunate that I regained movement on my left side. I was able to return to work in a year but it took another full year before I had my full stamina back. You might want to look up Phil Walker's page. He had his stroke a year ago and he is a bodybuilder. He may have some helpful hints for your recovery. I will be praying for you!

Thank you. Tori. I will keep you in my thoughts and prayers.

Tori said:

Hi Nando,

So happy for you that you're making it through everything you've been through. You've had a rough road. Keep fighting, and working and making progress in your recovery!

You are so right - the doctors we see can know a lot, and do so much to help us, but we do need to believe in ourselves too, and sometimes we can't believe everything we're told. We have to know our own strength and abilities and show people (including the doctors) what we're made of.

Best to you,

Tori