Quantcast

AVM Survivors Network

Has anyone managed to succeed?


#1

The thing I’m interesting in is that can anyone say he/she has recovered? I don’t mean getting used to consequences or any type of adaptation, i mean full( if it’s possible at all) recovery?
As for me i had my avm ruptured in march 2015 and I’m still looking for hope to be more humanlike. Any info is appreciated, because the Net’s general advice is to surrender and accept the fact you will never be ok (


#2

Hi Artem…
I think every AVM is a little different, and although you’ve heard it before,patience is key. I found out about mine when I had a seizure while I was driving and drove my car into some other cars. 10 days later my AVM ruptured. I feel very blessed to be able to say that I have very little deficiencies although my right side is very numb. I’ve had to get used to headaches and I’m not done with my treatment yet. Mine will not be able to be removed because it’s very deep. So I guess the answer to the question is it depends on your AVM and how they’re treating it. I believe, but I may be wrong, but I do believe that there are people who have full recoveries if they’ve had removal or radiation treatment. That will not be the case for me as the only thing they can do is embolize for right now. Maybe radiation down the road if this doesn’t work. Try to stay positive and count yourself blessed to be alive…I know it can be hard sometimes,we all have our days…but search for the good in life,try to stay focused on that☀️

Lorna


#3

Thx for attention at least. My Avm has been totally embolized and doctors say there is no chance for another rupture. The problems I’m experiencing now are mostly connected with the bleeding rather rhan with avm itself. It’s clear that belief is the key, but still i would feel a bit more hopefull if anyone tell me he/she has succesfully done it.


#4

There is a HUGE gap in between "surrender" and "full recovery." It's not a black-and-white opposition!

Straight truth: there is no "full recovery." The parts of our brains that are injured do not grow back.

But our brains ARE "plastic," meaning that if a road to one function is closed, there is potential for building an alternate route to that destination. You don't surrender to the loss; you get help and learn compensations. (Recognizing that my husband's bleed WAS a type of brain injury was a big step toward finding the right kind of treatment.)

For instance, my husband's frontal-lobe AVM left him with reduced executive function: his ability to plan ahead, carry out plans, figure out priorities, and get things done is impaired. But he has learned to use a planner to compensate for this. His executive function will never grow back, but after several years of learning to use a daily planner as his "Bible," he's able to maintain friendships, work at his job, and train for a triathlon. He was floundering in all of those areas before we found a neuropsychologist who taught him very particular compensations--down to the exact planner layout that would be best for him, exactly what time of day it was best to take his pills, the best ways to conserve energy, and so on--and now he's living a good life.

There is no such thing as "full recovery," but there is so much potential to train your brain by reorganizing your life (with guidance) to work around the fact that you now have an injured brain.


#5

What I also have learned is that every AVM is extremely different.
I guess my AVM was a simpler kind of an AVM. It was facial - on the nose, next to the inner corner of the eye. Mine was embolised and then surgically cut out. A year after the last operation they did a CT-scan, compared it to the previous scans and confirmed that the area and surrounding areas are AVM-free. Nothing is never too certain but now, 2 years later, other than a small scar between my eyes, there is nothing to remind me of the AVM.


#6

Whoa this is one of the deepest inquiries I've seen on here! I'm still early my recovery, so I'll let the vets speak. Good luck to everyone!


#7

I’m brand new too… That’s ok though, no shame in my game… Hey, hang in there!:sunny:

Lorna


#8

Wow, can’t really put it any better than what JH stated. We humans aren’t machines, we miraculously can adapt and move on. Sorry if that isn’t the answer you’re looking for, but I find that to be truthful in my own recovery process. You keep evolving until you find your happy state, if that’s ever true (I believe we keep adapting throughout our lives). Good luck in your journey. The fact that you’re asking this question makes you pretty human like already in my opinion.


#9

In fact, all of you said that “recovery” is impossible. Some even said that we can’t restore damaged parts, but how about proven proccess of neurogenesis? Investigations show that our cels do recover and new neurons can appear. Due to that, why do people say that we can’t relearn “newcommers”?


#10

This site used to have a sub-group called Success Stories. I cannot find it any longer. But yes…some of us made a full recovery. You are welcome to look at my profile page here. But I do not define full recovery the way you do. I have many friends who are physically and mentally challenged. They do more now with their lives than they did before. They have friends and family who love and care for them and they contribute to society in a positive way. BTW…my bleed was 28 years ago. Your journey is just beginning. I know people who started walking after 17 years. It is waaaaay too early to give up!!


#11

My AVM ruptured & was removed just last year as well. People that don’t know us can’t even tell that we had brain surgery. Everything the doctors & internet tells you is very discouraging at times but I just try to remain hopeful & excersise the area of my brain that’s damaged in hopes that it will be healed enough for me to do the things I want to do in life.
I guess what I’m just trying to say is to remain hopeful & be patient & allow everything to fully heal. It takes a big emotional toll on us but everything does happen for a reason so just be patient & take baby steps to being fully healed.


#12

As my former supervisor always said “Anything is possible”.
It is very true, and it is surely possible to completely recover from
an AVM removal operation.

After my craniotomy…I was told that the Dr. said that I would
more than likely die or become brain dead. I was in very bad shape,
it is true, but I slowly, very slowly, improved. I had problems walking,
and problems with my facial expressions, and problems with my eyes,
and problems with my short term memory, problems with fatigue, etc.

But with slow improvements, I was back close to normal by about
5 years post operation. It was worth waiting for. I drive again, and
can hike three miles, at least if it is not 100 degrees out!

Life can be good, keep trying, and even if you do not get back to
100% of what you once were…you can hopefully still enjoy life, and be a
help to others.


#13

My bleed almost killed me and my dad was also told to “get the Minister”. I recovered enough in six weeks to go back to college. Short term memory problems had diminished quickly enough.

I had lingering effects of the bleed (near optic nerve) for a couple of years. These included poor vision and hand/eye coordination problems. It was a slow recovery and challenging being in college at the same time. But I graduated second in my class.

By 10 years I was almost completely back to normal and had even done back to school again and attained a University Degree in Mechanical Engineering.


#14

Good morning,

 My recovery was nearly complete. I worked hard at rehab. It took a lot of time. Years to be accurate.The slower I went, the quicker the recovery. Some speech burps but I would laugh, not resist, and practice the word. I learned the Universe does not hurry.

#15

Hello, my daughter has a facial AVM. She was born with it, everything was fine until puberty, first she has AVM on the right cheek, before 6 years ago she has embolization, followed by surgical resection. Five years we were without problems. AVM is now active again, spread to the jaw, lips, tongue, a month ago again she had embolization, tomorrow is waiting for an operation, she has tissue necrosis on the chin. I do not want to scare you but AVM is very unpredictable, you’ll often go to control. Two years are not enough to say everything is ok. Facial AVM are much different from the brain, they are not life threatening but they have space and rapidly spread. AVM is particularly active when hormonal changes in the body, puberty, pregnancy, menopause … We wish you all the best (Sorry my English is not perfect).


#16

I thought I had overcome my AVM. 2 years of recovery from the date of surgery. Went to trade school, 1 more year. Started drafting & started moving up the trade ladder. On the third employer, everything I had learned began disappearing. By the time 9 months rolled around, I didn’t even know how to turn on my computer. So in short, thought I had successfully OVERCOME my situation, I was wrong. I heard of most caese with full 100% recovery, with no side effects. That’s is great, happy for those people. To me, if I can tend to my needs & bath myself, that IS being successful, in my opinion.


#17

I often feel the same way, mainly because I am just beginning. I found mine 3 months ago and have since gotten cyber knife radiation. But I am constantly scared of having a bleed and becoming paralyzed or loosing my life. The wait process after radiation is so hard. I often have felt depressed and have anxiety. This site helps, I am trying to find a way to live life to the fullest and to stop worrying but its hard knowing you kind of have a ticking time bomb in your brain until it gets closed off. Everyone here really helps though. But like they said, patience is key. I think most of the time from what i’ve read people go back to living normal lives, but the trauma and experiences of having and AVM stay with you forever, for the better even to make you appreciate life even more.


#18

I am currently working daily on my recovery, but it has been years of daily work. I wish that it would be quicker, unfortunately this is not the case. As the time has gone by though, there has been major improvements. All good things take time never quit trying.


#19

It’s a complicated road many of us, are, or have navigating(ed). :persevere:


#20

GREAT NEWS. My doctor had me put in the hospital for my blood pressure. It was extremely high. 220/105 and they took an MRI of my brain. It showed a new 2.2 mm of a new brain aneurysm. I cried and worried so much for this and prayed and prayed. Because within me I knew I wouldn’t survive and other brain operation. A very dear friend called me and said Mary do you know natural doctor named Joel Wallach?

I said yes I have heard about him but I don’t like him because his vitamins cost too much. He said you better take a look at his video’s on Brain Aneurysms. I looked at it and he states that you could heal yourself of Brain Aneruysms. He said to take Colloidal Copper and zinc to stop the toxsisty of the Copper.

I did that for six months and last week the tech who took my brain scan called me after I came home about 3 hours later. He said Justice why did you come here? I said, "The doctor send me to see how my Brain Aneurysm is doing. He sounded strange so I called my doctor and his secretary said, The doctor said your brain aneurysm is stable.

It sounded to strange so I went to get my cd of the brain scan and the report that came with it. It said, “NO BRAIN ANEURYSM” I am not sure but believe it was the Copper.

Here is his lecture on brain aneurysms. https://www.youtube.com/watch?v=HY7ROWyKSiY

I took 1 oz of Colloidal Copper and 15 mg Zinc for about 6months. Now the doctor keeps calling me, to and get the brain surgery. I will not go I hope this helps someone because I couldn’t believe it. God bless you all.