An AVM survivors brief story

I have had two cerebral aneurysms that were surgically clipped, as well as a brainstem AVM that I had surgically removed. Although I was told that my AVM was inoperable, I had already suffered from three haemorrhagic strokes, and my brain would not have been able to handle another one. So I took a big risk to have the AVM operation. Now I am in pain every day from nerve pain, which is one of the worst kinds of pain. I still cannot walk and although I may never walk again, I still have hope and faith for the future. I suffer from depression on and off, which is normal when you’ve been through trauma. I often feel alone. I moved into supportive housing located about an hour away from where I was currently living. I can’t do a lot on my own anymore, and although I do need help, I am not complaining because it could be far worse – and after all, I am alive.
The operation was a success in that the AVM was removed, but the after effects were quite horrendous. I had to learn everything all over again – how to eat, talk, move, etc. I even completely forgot how to pray. I had to learn all over again and, in fact, I am still learning. My vocal chords have been damaged, so it is a struggle for me to talk.
Even though I have people around who are supportive of me, they cannot always be there. I completely understand this. I really needed my family but they were not there. I felt very alone, like no one understood. When people say “I know how you’re feeling”, I know they mean well, but I still wonder to myself: “How? How can you possibly know how I’m feeling? After all, I don’t know how you’re feeling, so how can you understand what I’m experiencing?” No two people are the same. Everyone feels differently. I would never compare my pain to others. But I do know that I have the strength to endure this fight. My strength is what surprises me most.
brothers. There are also many I have never met who helped through funding for physiotherapy and praying for me. I want to thank everyone from the bottom of my heart. This health challenge is not over yet. I believe I can continue to recover with the help of Allah.
Many people do not know about an AVM. It is rare, affecting only 1 percent of the population. It can affect anyone. It is important to raise awareness to help others to understand or to help others who might be suffering from an AVM.

I want to Inspire others to not give up, no matter what battles they may be facing. My life changed a lot in just one day. I can no longer do the things I love, and that saddens me so much. However, I have been blessed with a lot of patience and I am focusing on acquiring new hobbies, new interests, and new things to love. Changing my focus to this new way of life is not easy, but it is not impossible.
I realize that it is human nature for people to be afraid or uncomfortable around things that they don’t understand. I am honestly the same way, but I have since realized that having a disability doesn’t make you different. A little understanding can go a long way in removing fear and doubt of things that we don’t understand or that are unknown to us. Have you ever stopped to think how the person who seems “different” is feeling? No, probably not. Yes, sometimes I am sad and I cry……and that is OK; I am only human. If God didn’t want us to show our feelings, he wouldn’t have given us feelings and the ability to express them.


Firstly welcome! It is great you joined our group, and you have experienced a lot. That is a huge understatement, and I admire your positive outlook so much. Our group here has a wide array of experiences, open and honest and I think thats what helps us be strong, even when we don’t feel strong. Thanks so much for joining, and being here with us and for us! Take Care, John

Thank you. I really appreciate it.


Your story is frightening and inspiring in equal measure! I think it’s an astonishing thing to share and to reflect upon. Your determination to get the best out of life is brilliant and I hope, if I ever find myself in a similar position, to maintain as upward an outlook.

I think you’re doing amazingly. In those moments when your doubts creep in, I hope you can remind yourself that there are people out here completely blown away by how you’re dealing with it.

Very best wishes,



That really means alot to me, thank you. :slight_smile:


I’m so sorry to read that despite your treatment that your quality of life is so poor. I’m Canadian too living about 45km west of Toronto. My 17 year old daughter is the AVM survivor. Her AVM was near her brain stem in the cerebellum and she needed emergency surgery following the sudden bleed that she suffered 7 years ago—happened just 11 days before her 10th birthday. She was in horrible shape for the first six months requiring a tracheotomy, Gtube for feeding and a wheelchair. No one could tell us to what extent she would heal in terms of speaking/walking etc. Fortunately at 6 months post rupture she turned a major corner and began to progress rapidly. I truly believe her youth is responsible for this. Today she is thriving and we’re planning a trip to Europe next month. It has taken her all these years to regain balance and stamina. Her stamina is not the same as her friends’ but she’s so much better.
Anyway that’s our story.
When I read about your nerve pain I wondered if you’ve ever been prescribed Gabapentin. It can be very effective for that.
I hope you will experience much improvement soon. We are happy to support you emotionally here. :heart:


I apologize for not replying back to you sooner. I’m really happy to hear about your daughter. I think you’re right, her age probably did play a huge role in her recovery. I had my first brain bleed when I was 27. After 3 bleeds I didn’t recover as I though I would, I was completely bedridden and couldn’t feed myself. Not anymore. :slight_smile: I considered myself blessed.