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AVM Survivors Network

Worst Life

Hello I am a 16 years old boy and I had a cerebral avm on october 2014 and right side of my body doesn't moves so well, I will have a gammaknive operation on 2nd of february, I just wanna know, will I ever be normal as before? if so then in average how long does it takes to be normal? :( Plz help me I am fed up of this life I'd say death is better than this.

Hi Saurav, I remember welcoming you recently and I commend you for this posting. You reminded me of a recent posting by another member. Perhaps you will find the discussion and the replies helpful.

http://www.avmsurvivors.org/forum/topics/life-after-surgery

I wish you all the best.

Saurav, it sounds like you are going to need some counseling to get through this difficult experience. I have two sixteen year olds, and I can tell you as a parent that at this age, emotions run high, and it is easy to get discouraged and to think that rough times will last forever. Normal as before? That is a difficult goal. You will never be 14 or 15 again. You will keep growing and changing. Even for adults, life never stays the same, and neither do ourselves. We keep changing inside, too, and that is actually a good thing.

There are some hotlines you can call in Norway if you feel yourself to be in crisis: http://www.suicide.org/hotlines/international/norway-suicide-hotlines.html

And, please share your feelings with your parents. It is a sign of strength to ask for help.

Saurav...please stay strong during this journey...I was just chatting with an AVM friend. He started his AVM journey when he was close to your age. Today, he is married, has 2 boys and has a successful job. Things will get better but it may take some time. You will win this journey if you just stay strong & positive.

Also, please let your parents know how you are feeling. There is also the hotline sent by Dancermom that can talk to you about your feelings.

We are here to support you, Saurav. Please keep in touch as we all care for you!

Hey Saurav. I see you are from Norway. I am from Denmark :-) Like you I found out about my AVM not long ago (feel free to read on my page). The AVM has had big influences on my life so fare. I have to start my treatment (embolization) on the 15th of January. All though this is scary at the moment, I know that I am lucky that I have found out, and able to treat it. We have to stay positive and have faith in that there are better things waiting for us on the other site of treatment :-)


And now some words in danish :-)

Der findes også en sub gruppe på denne hjemmeside som er forbeholdt os fra skandinavien. Den kan du også melde dig ind i :-) Hvis du har nogle spørgsmål du gerne vil drøfte, så er du velkommen til at kontakte mig :-)

Jeg ønsker dig alt det bedste. Hold ud..., du er ikke alene, og der venter dig alt godt i fremtiden selv om alt ser lidt sort ud nu..

Saurav, I’m so glad you found our community. It can feel like you’re all alone with an AVM. It’s good to reach out and talk to others who understand what you are going through. There are over 7,000 survivors who have joined this website, from all over the world. Some are your age and some are older, some have it better than you and some have it worse, but we all have one thing in common - we are all AVM Survivors.
I know it’s hard to do, but do your best to focus on one day at a time. I read your profile and see you were doing physiotherapy. How is it going?
Your age is a great asset in terms of recovery, so never give up and don’t lose hope. You can do it, I know you can!
By the way, I see you received a reply from Allan in Denmark. I wish I could read Danish! :wink: All the best!

Hi Saurav. It is always hard to say how we will be after our AVM, but healing certainly takes some time, so try not to be discouraged. Thank you for posting your question, as there are others who may feel the same way. You may also wish to join our teen group for AVM Survivors and below is the link for you. Please keep us posted on how you are doing. :)

http://www.avmsurvivors.org/group/teenswithavms

I understand completely. It is so isolating, and brings so much bitterness that we're stuck dealing with this crap.
The gammaknife is pretty painless, so you have nothing to fear there.

As for feeling normal again...i wish i could tell you how. I feel hopeless and useless and that it would be so much better for my family and friends and work to just be gone. It just sucks and isn't fair.
What i do know - is that it is life changing. and i still haven't accepted this either. When your life changes...everyone handles it differently. Try and hold onto yourself and your happiness...don't lose it yet. Don't let it slip like i did...you're going to be ok. It's going to be ok...and changes will happen that will continue this rollercoaster we've been put on. It's how we can take them and roll with them. please keep trying...please don't let it take you over. Please don't push people out, and please keep loving yourself and how unique we are now. Own it as much as you can, and take it moment by moment. Please...for all of us that have lost that hope...hold onto yours, for all of us...You deserve to be happy, and you keeping your hope will make me happy, give me hope that we can do this. together. We're going to get through it. all in our own ways. and getting through it gives all of us more hope.
Don't give up on life yet. You're too young to give up. You're too important of a human in even a strangers life. You are loved. You are here. Please don't give up.

Tusen takk for alt,
Jeg skal melde meg inn på det. Håper at alt går bra med deg, God bedring til deg å :)

det var så lidt :-) Der er dog ikke så mange at skrive med, hvilket også er grunden til at jeg skriver på engelsk.. Det tager dog ofte længere tid når en må stave sig gennem det engelske :-)Norge er et fint sted.., er på besøg hver sommer, da kæresten min er fra sogn & fjordanne

Pas på dig selv :-)

As others have mentioned, it is often hard to predict the outcome of ruptures or intervention. What can make healing harder are emotional challenges that don’t allow you to stay positive. The community here can help with support, but I’m sure discussing thing with a counselor wouldn’t hurt. Hang in there and please know that the unknown will pass. I know this is the hardest part for me of having an AVM.

Please stay strong and seek some help ASAP...there is nothing in this world better than life itself...i know things are hard but understand you are not alone and this will make you a better person in the future when you look back at it...As hard as things get we need to stay strong and positive at all times to overcome a rare condition...if you need to talk pls feel free to post here anything you like as we are all here to help each other as AVMers...and yes you will recover just takes time and patience...God bless!

Hi there i just wanted to leave you a post as i myself was 17 when i was diagnosed with my avm so i know exactly what it feels like. my whole world was turned upside down when i was diagnosed and i never thought i would be what i classed as 'NORMAL' again. i had 2 embolisations followed by gmamma knife surgery in 2009 which were only made things better slightly still leaving with unteated vessels that my radiologist couldnt get to duruing the operation. i did the gamma knife to so just be strong i got through it and so can you you just need to stay strong just keep focused on the end prize and i know its hard to think like at the time ive been there to but i had to just say to myself you know i just need to get up and get on with my day i have know choice but to get up and kep battling through this cause what else am i meant to do. you can do it!!!!! i just had my open brain surgery/ craniomtomy on new years eve so im in my recovery but i just got a phone call yesterday to tell me i have got the all clear after 7 hard years and let me tell you it feels amazing. im 24 now so im not going to lie it may take a while for you to be 'NORMAL' again or it may not your gamma knife may work but its not always black and white as im sure you know. dont give up stay strong everyone here on this website will help support you. you can do this.

joy

devongrace, your reply to Saurav is awesome and from one young person to another. You brought tears to my eyes!

Hi Ninibeth and I'm sending you and the furry ones positive thoughts and good wishes!

Hi Adrian, Good for you in posting support for Saurav. God bless your family and you.

Hi LiveHappy, Good for you in posting some excellent advice to Saurav. I agree that life is a gift.

Yay for you, Joy, in posting some great words to Saurav. I continue to be so happy for Jonny and you.

Hi Saurav, I know it seems like an eternity but it has not even been 6 months. The brain heals SLOWLY! The good news is that it can heal. Unlike a terminal cancer…time is actually your friend. You have time to get well. How long? A lot depends on your persistence and determination.

Saurav,

I also had a stroke and lost a lot of movement on the right side of my body. I am 31 years old. Since my stroke I have come along really far. I still have difficulties, but I have come really far. And you know what? I am all the better for having gone through this experience. Sure, it had an affect on my right side, but I also was able to see things that I did not see before. You are young, and that is on your side. And you know what? My stroke was 4 years ago and I am still improving! I will tell you what the secret is...it is to NEVER GIVE UP and to CONTINUE WITH YOUR EXERCISES/PHYSICAL ACTIVITY.

I can understand why you have those feelings about this kind of life. But take it from me and from all the other onces in this community who have gone through the same. Life DOES go on. There IS a light at the end of the tunnel. But you have to go and get it by never giving up!

All my best wishes!

dreyx2000