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AVM Survivors Network

Will I ever be fine again?

Hello,
I had an avm on my cerebellum on october 2014, due to which right side of my body stopped working normally it is on the way of being cure because before so I couldn't stand up but now I can walk slowly, I had a gammaknive operation on february 2015, but from the last 1 month I don't find any changes in me at all, I'm having regular physiotherapy about twice a week. My question is will I ever be able to walk normally, write nomally, do some regular activities again? If yes then how long will it take? If it won't then be honest, I am strong enough to hear a no. I'm just 17 I feel like my life has been spoiled.

No no's from me, Saurav. I know a month is a long time when you are 17, but your treatment is so recent, and there is so much room for improvement still. Positivity and persistence are key to your recovery. Get your family and friends to offer you incentives to reach new milestones. It gives you a little extra push. Celebrate each achievement. It's a journey, Saurav, and you are just getting started. Keep putting one foot in front of the other, and you will see someday soon how far you have come. There are so many success stories on this site -- you can be the next one.

I have no doubt you've heard this from your healthcare team but only time will tell. When my AVM ruptured 2 years ago I was a hot mess for three months before I cooled down to be a tepid mess a couple months after that and then got to the place where I am now. A lot of it depends on where the AVM is/was to figure out your recovery. I was 32 when my AVM ruptured and 33 when it was removed permanently. To be sure, it has drastically changed the course of my life, but you can't let it define you. You'll learn how to adapt through practice, patience, and technology. For instance, my memory is terrible so I use my iPhone to help me accomplish tasks. The important thing is to be cognizant of any deficits you might have so you can accept and address them accordingly.

It is so unfair that this would happen to anyone, especially so young, but know that you CAN do this! This is a phenomenal community - continue to reach out for support - you will find it here.

Saurav,

Will you ever be able to do things6normally like you used to? Sadly, no. My AVM ruptured a few years ago. I have double vision, my balance is off, and I lost my career.

What you need to do is improve what abilities that remain. Fortunately as you are young, your brain will repair itself, but it will take a long time.

Continue with your therapy, use whatever tools that will compensate for your disabilities. Investigate nootropics like TruBrain.

You have a long, and difficult road before you. Rely on your family and friends the best that you can. Good luck, and be well.

Greg

I had my AVM ruptured 9 years ago, it took me about 6 months to walk properly, and about 12 months to read again as I suffer some vision loss. Took me three years to get back to some kind of work as my career as a software engineer was ended. Took me 8 years to stop my seizure medication. Though life was never the same as before, I am grateful for the work of medical staff and all the support I got from family and friends.

Just be positive and take small steps.

I don’t know. No one does. I’m 37. 3 months post op. Being young helps. Just started taking steps out of the blue this week. Hit the pool for the first time and I was the old me in the water. Sorry I dont have any answers. Jeremy

Saurav, It’s still too soon for you to realize what your deficits may be. My son’s AVM burst two years ago when he was 11 years old. He continues to improve

You are seventeen years old, you will also improve for years to come. Hang in there!

My AVM rupture led to a 3 month stay in the hospital and rehab.When I came home I was permanently unable to ever walk again.But then your situation doesn't sound near as bad.But what I wanted to say is while at first my right hand and arm were less than 50% of what they were before that did improve for me.I took up guitar again which was my passion when I was young and while it was frustrating at first gradually it improved to the point where I could play better than I ever did.I was doing other coordination exercises as well like daily writing,etc.While in the hospital in rehab they kinda forced me to learn to write with my left which I did learn to do quite well.But the guitar and other things I did on my own at home to force those neuro pathways to reform paid off and now I'm ambidextrous.
What I'm trying to say is a certain amount of what you gain back is going to be up to you.Find something(s) you enjoy that will cause you force you to concentrate and work on your coordination and dexterity-and don't give up!You may get frustrated at times but that is normal and to be expected-just set realistic expectations for yourself and set up a schedule for yourself and you may find you've exceeded those expectations.Some things may not ever come back fully 100% but be happy with what you do regain,keep the faith and never give up.
My best to you.
Denny

Dear Saurav,
Unfortunately, nobody can give you a definitive answer. Every brain injury is unique, and the only thing that doctors kept repeating to us when our daughter's AVM ruptured in June 2013 was that she was young and had a supportive family. What I have learned over the course of our journey of recovery is to push yourself to do as much as you can, even when you think you can't. Be active every day, mentally and physically. My daughter had balance issues, dizziness and nausea, but I pushed her to start running, and we ran 2 5 K's together in November 2014. She still has a lot of cognitive issues, but she continues to improve every day. It's a long, slow journey, but you have to believe in your ability to get better. It helps to appreciate the good things you have in your life rather than dwelling on the unfairness of your situation. I wish you the best of luck.
Ela

Speaking as a survivor I want to give Ela a huge hug for her support for her daughter. It takes a while to be conscious of your deficits and then when you are aware of them you have to learn to develop coping mechanisms and implement them.

Dear Saurav!
Keep your chin up!! Getting better sometimes comes in "baby steps" and it feels so slow, but you are young and your body is a precision jewel! I am at the youth of old age and it took me three full years to get almost all the way back to my old self. I can do almost everything I used to do, except sit, and who wants to do that anyway? You will get better!! Be kind to yourself and celebrate each little improvement! I wish you all the best and every success!
Your friend,
Donna

Hello Sauray I totally understand your frustration I was 15 when my AVM was discovered I recovered, but it took a while. You are actually doing great if you are walking and able to move on your own. Give it time be patient with yourself and everything will fall into place. I'M sure you have a great life ahead of you keep up the fight!

Saurav, you are young. Many of the writers have said what I will repeat. You are young and that is probably the greatest thing on your side! Every case is different but when you can keep goals that push yourself and challenge where you are having difficulties it will pay off. Of course, try to do things that you enjoy doing also. My son had terrible difficulties when his AVM ruptured 16 months ago at the age of 21. Every day he would keep trying to walk (he could not walk at all after his rupture), to keep his balance, and to talk. He went back to university in September when we weren't sure if he could handle the full course load and practice teaching. He is graduating from his Faculty of Education this April and has 3 school boards interested in hiring him. Keep putting one foot in front of the other and remember it is the "baby steps" that add up to progress.

The main thing that I've learned from reading probably way too much on the internet, and from everyone here is that - every person - and every AVM is different. No two are alike. No two recoveries are the same either. My daughter had Gamma Knife for her AVM in Oct 2013 when she was 17. They kept telling me that it would take 2-3 years to obliterate - but they also said that the younger the patient, the quicker it takes!!! It has been almost a year and a half and the AVM has shrunk to between 1/2-1/3 of its original size!! Every step, each piece of good news, each bit of progress is reason to celebrate! One month is a very short time to see any changes, but you will improve, according to your own body's timeline. Please be gentle with yourself. Let people help you. Ask for help when you need it - whether it is getting something for you, giving you a hand to walk, or just someone to listen while you get out some anger, frustrations or sadness. Or maybe you just want someone to watch a funny movie with you. They always joke that with teenagers, "It's all about me!" Well, right now it IS all about YOU!!! Your recovery and your life. And that's how it should be! I will pray that you keep making progress and have all of the support you need to get through this most difficult challenge in your life. Hang in there! <3

It’s changed… A.V.M. Before or now, It’s different…

ME: JULY 27, 2009, 27 YEAR, A.V.M. It’s changed my life! Sometimes better, sometimes worse…

Don’t remember 2 1/2 months, Intensive Care UniT, nursing home, Don’t remember…

DO remember rehab inpatient 3 months! No hair!!! Wheelchair!!! Right side dont work, arm in leg. SPEAKING… mix around… blanket, pillow, blanket, pillow… I don’t know!!!

NOW: I’m walking, The Right brace. Right arm Little movement. SPEAKING, Whole sentences, Little at a time!

A.V.M. It’s different…
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It gets better and easier with time. You eventually get used to your new “normal”.

Be strong but not too strong.
Be weak, when you need, but never give up.

Even once you walk as well as you, can with all of the strength you have in you, there will still be days when you don’t want to put that much effort into being everyone else’s “normal”.

You’ll learn to pick and choose your battles daily, you’ll even battle yourself, but you’ll learn when to love yourself even though you feel broken some days.

Hello Saurav,
You’ve had a lot to deal with young man. The fact that you are in physical therapy & seeking counseling is a testimony to your drive to improve.
I’m 2 yrs post AVM, after aerious brain bleed & 6 weeks in intensive care I woke up with severe short term memory loss. 70-80% vision lost, some physical right side.And scared to death. I opted fir gluing , saw a vision therapist for a year , therapy for short ctetm memory & physical therapy. In the end I’m left with 40% vision loss, struggle & work daily in shirtvtetm loss & slight physical impairment. I can’t drive, but I was able to move in my own & I’m thankful for my recovery. Stay strong, continue therapy & don’t give up.
Find a counselor that you can talk & relate to. Use this community lots of help.
God Bless
Debbie Raynes
Columbus, Ohio

HI Saurav,

I have good news for you from my experience, my sister Alejita was diagnosed with an AVM on June 17th 2012 she was 17 as well, she was paralyzed on her right side as well, and she is fine now, she was very strong doing her therapies and going thru the process!! but if you are strong and want to get better you will!! NO ONE CAN TELL YOU YOU CANT!! YOU are the owner of your life and with GOD help you will be a champion like a Alejita!!! kick this AVM out of the brain and be happy how she is now. working, going to school and having a normal life, the road is hard and full of stones but start praying and be positive, have faith because you already are a SURVIVOR!
I will have Alejita contacting you soon!

DIana ( Alejas Sister)