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AVM Survivors Network

Has anyone managed to succeed?


#21

My neurosurgeon says I am 90% recovered after rupturing in Oct 2015 and surgery in January 2016. I feel quite normal. I can do most everything I could do before except that I am weak on the left side. I am working on that. I tried physio but didn’t find it very helpful. I now do 20 minutes a day on the treadmill, walk around the neighbourhood and do most of the yardwork including mowing and weed whacking. For 65 I don’t think that is bad. I think age and attitude determine
how well you recover.


#22

I know this topic was posted last year, but when I saw the title, I knew I had to contribute. I have been having a really strong flashback all week about being in grade 6. My AVM was discovered in grade 5, 2006 when the bleed caused a severe headache. It was report card day at school, but I was taken away in an ambulance a few hours before the end of the day (I have never looked at a report card since–but it’s because I don’t judge myself by how a school grades me. I don’t value that perspective… I never even liked school to begin with!!) I always did well in school… I think I finished grade 4 with straight A’s, but my grades dropped during home-instruction for the rest of grade 5 because of my short-term memory loss.

Anyways, my flashback is report card day grade 6, roughly a year later. In school, we got certificates with seals for different accomplishments… volunteering in the school, perfect attendance, regular homework completion, etc. My teacher gave out the usual bunch of seals to the class, and then he said, “I have one additional “winit” (as the seals were called) to hand out. One student has had to change her learning style quite a lot this past year.” (I realized: this has to be me.) She has to take a lot of extra notes, and she uses a high-lighter for everything… in fact, the people who sit around her have even started using that technique as well. She even managed to pull off a few A’s on her report card this term." Then he presented me with a note-taking and study skills “winit” and the class applauded for me.

So, I hadn’t “recovered” completely, but I had used my new strategies to succeed. By the time I got to high school, I made honour roll every semester and aced every class. I still have not recovered totally, but I succeed in many aspects of my life because I am determined to be better than my AVM!


#23

Hi Artem
I can say that I have returned to pretty much normal! I had 2 aneurysms in 1998 a craniotomy shortly after and it took a couple years but I went right back to everything I ever did before of course now I’m 20yrs older and I think age is affecting me more! I think everyone has a different experience so don’t give up hope I had a serious bout depression after surgery thinking I was never going to be the same and feeling scared that I couldn’t do anything like I to but I soon realized I couldn’t if I didn’t try!


#24

thanks much for such words. you are seem to be the only peace of hope in this theard. could you tell more? i mean: which side was weaker? how did you manage to overcome depresseion? how much have you recovered? and how old were you when it happened?
thx for any info, your words are “golden” for me.


#25

dueing the time you were recovering were you able to do anything on your own after the rupture?


#26

I ruptured in October 2015 and didn’t have embolization until January 2016. During that time I could do very little. Double vision, tinnitus, dizziness, falling down, incontinence, severe pain and extreme shaking. I was at the mercy of my husband to take care of everything for me. After the embolization it took about a week before I became conscious then recovery became more rapid. Virtually all the previous symptoms were gone and I began rehabilitating. I was back home by mid February and getting stronger by the day. I’m very stubborn and determined!


#27

I wanted to make a few points. It is not uncommon to make a complete recovery. It is uncommon to find many of those stories here. Many get weird headaches or strange bruises and shortly dismiss it and go on with their lives. Others get a good scare and join us for a short time before making enough of a recovery that the need for this support group fades as they return to their normal life.
Today makes three years for me. This has become my new normal. It’s different than it was before but it is happy. When my focus changed from how far away I was from the old normal to how far I’ve recovered things improved emotionally.
I have a pretty good grasp of the how and have made peace with the why. I enjoy the what now. I have found three years later that I’m still improving. Not everything I can change, but there is still a lot of ground to be made in the places I can. Best wishes.


#28

Always great to see you here Jeremy. I’ve found perspective is so important, I’ve had some adjustments for sure, and some close friends and family that remind me when I need it! Take Care!


#29

This is a sad question, and sadder still that many people aren’t providing the right answers.

I agree with JeremyH that complete recovery stories are probably rare to come by in this forum, so I am here to share my recovery story to show you that it IS possible and probable.

When my rupture happened in early 2002 when I was almost 21 (funny how I think of it as MY rupture), I was physically and emotionally destroyed: I stopped making efforts to respond to doctors’ requests to lift my hand or open my eyes. All I was able to focus on was the pain and the darkness (I was unable to see for several months, lost all short-term memories, and lost mobility in my lower body). They say I had a seizure, but I can’t remember. The pain was wearing me out, the drugs were bringing me down, and drowning in self-pity, I had all but given in. In March 2002, I had a craniotomy and started my road to a better and healthier life.

Today, 15 years later and 15 years wiser, I am stronger than ever. I went from a pack-a-day smoker 15 years ago to a marathoner (I’ve run 15 half marathons, 2 18-milers, 2 marathons, and 30 other races in various distances) and a semi-competitive canoe paddler (I raced in Moscow, Russia on behalf of Team USA in the dragon boat world championship in 2016). I beat the short term memory issues and the frequent blinding headaches to finish college (albeit a few years late) and am now a VP in a financial institution.

My most humbling moment was learning to walk again, blind or not. I remember how embarrassed I was when my parents had to hire someone to stay with me overnight so they could carry me to the bathroom when I had to relieve myself or take a shower. I literally crawled around the house when no one was home to help me get a cup or water or something to eat. I realized how many challenges I had ahead of me and made a commitment to myself that I would get better so that I would not be a burden to others and can participate in living this life with the ones I loved. That was my personal motivation.

I made it through that two years just talking myself through it, taking it easy through the anxiety attacks, but always looking for some small progress. There was also someone in my life at the time who motivated me to become stronger, who showed me pity has no place in my life, and that I survived because I was meant to do something bigger than better than where I was headed before the rupture. I’d like to think, whether you are religious or not (I’m not really religious), that ‘God’ let this happen to me because he knew I was strong enough to overcome it: better me than someone else who was less able to withstand the pain. I’m not the same person as I was before the AVM, the headaches and occasional memory loss still happen, but I’m better in so many ways.

I hope you find that same strength in you… no one else believes in you more than you do.


#30

Please tell me more about your husband training for a triathlon. Before I got sick I decided to train for one, and it would be my dream to see that through. It’s been harder for me to train with my left side issues and vertigo and I was just thinking if maybe I should just let that dream go. I could use some inspiration!


#31

Amazing! very inspirational, thank you for sharing


#32

Patience, motivation, every AVM seems to be different and lots of faith. My niece had a cerebellum AVM rupture on May 23, 2018. She is 16 years old and youth on her side. Her AVM was retracted in the cerebellum and was a 7 cm vermi. So far recovery has been slow and small steps. She still cannot talk but she is moving her limbs on command. She is functioning without life support and the doctors and cna staff has started to believe that her recovery is possible! It is possible and I am seeing it first hand. Stay positive, believe you can get better and look for what is going well. I believe recovery is very possible. Truly you and those around you will never be the same having gone through the experience. It will be a miraculous journey!


#33

Fingers crossed and many many prayers for your niece and her day-to-day recovery. God Bless. Magda