Hi everyone! New introduction here, although I’ve been a member and reading posts for a while now. Looking to share my experience and to learn from others who may have had a similar situation.
I was diagnosed in April 2016 at 31yo with a small right frontal lobe AVM after suffering a mini stroke from a bleed. I had never had any medical history whatsoever until then. After a sharp pain in my head, my symptoms were weakness on the left hand, a slight facial droop, and difficulty articulating words, although I remained conscious at all times.
I was in the hospital for about a week, and after repeated MRIs the doctors noticed the bleed had stabilized very quickly after the initial rupture. After a follow-up angiogram 2 months later I was told about the AVM. I was referred to the doctors at Toronto Western Hospital who reviewed my case and recommended I have surgery for resection of the AVM, as they say it’s superficially located, and seems to be easily obliterated through surgery. I’ve been resistant to surgery, due to the risks of complications and also the stigma associated with having a potentially visible scar on my already bald head/forehead. For this reason I explored the option of Gamma Knife treatment and have been inclined to go that route.
The doctors have said gamma knife is an option, but their overall panel recommendation was surgery as it’s located in an accessible area and is fairly superficial so it would be the most quick and effective solution. The gamma knife doctor believes due to the small size of my AVM (about 1cm), there is good chance it would be completely obliterated with radiosurgery in the first year.
Now, almost 2 years after my initial consultation, I feel ready to choose a treatment option, and still very inclined towards gamma knife. I feel so lucky to have made a full recovery from my bleed, and the only thing I still have occasionally are mild headaches in the region of the bleed to remind me to do something about it.
Would love to find out from others who’ve had similar experiences. Thank you everyone!
Hi Pedro! Back in September of 2016 my AVM burst and I suffered a stroke. I was up at my cottage with my boyfriend and my friends enjoying a glass of wine by the fire when my life completely changed forever. I was airlifted (my cottage is in Wasage Beach, however I live in Toronto) to Toronto Western Hospital. After a few days I was treated with Onyx Embolization and Gamma Knife Surgery. After that I spent 3 enitre months in in-patient rehab where I worked on things such as mobility and memory. I can happily say that I have had great success since my surgery and can say nothing but positive things about the staff at Toronto Western Hospital.
In fact I am back at work and life is pretty much back to normal. I attribute a huge part of my recovery to the fact that I did work hard everyday, keep positive and that I chose the option of in-patient rehab at The Toronto Rehab.
Although I have such a success story with the type of surgery I had, I would strongly recommend doing your research and completely understanding the good and bad with each and every option of treatment. I know that Toronto Western Hospital is one of the best in treating AVM’s.
Take Care and good luck on your path to whichever way you choose to treat your AVM.
Hi Katerina, thank you so much for getting in touch with me and sharing your amazing success story!
It’s so good to hear from others who’ve had treatment at Western. So far I’ve only met with their doctors a few times to discuss the treatment options, but for the past 2 years the ball has really been on my court, trying to decide the best treatment option for me. I have done so much research from studies on PubMed to talking to doctors, but no one can make the decision for me between gamma knife and surgery.
Surgery is what has been recommended due to the small size and easy location, but I’ve been leaning towards Gamma Knife due to the non-invasive nature. However sometimes I’ll have some stronger headaches in the area, and that makes me a bit anxious about choosing a treatment option that takes longer to take effect. I should be making a decision in the next 2 weeks.
It’s so great to know your life is back to normal. How are you feeling nowadays? Did you have swelling or any side effects particular to Gamma Knife?
I’ve only been offered embolisation for my AVM (which happened to be the option I was most comfortable about) but I have to say I agree that your choice seems difficult for you in the same way I would see those choices as difficult for me.
If you really want it gone sooner, then surgery is probably the right answer. I don’t know that you should worry about a scar. One of my colleagues at work clearly had an accident of some kind and has a decent scar on his egg-bald head. It tempted me to talk to him about it but it in no way diminishes my view of him: rather, I can see he has been through a big deal at some point. (His scar is actually Harry Potter zigzag shaped!). You’d get some pin marks from the gamma knife “halo” for a while. I don’t know how long they show for.
However, I look upon open brain surgery as a major assault and to be avoided unless absolutely necessary (personal view).
Gamma knife, if you got on with it, you might be fixed by now! 1-2 years is not too bad. A year would be great. There are undoubtedly risks associated with gamma knife, so to be chosen carefully, too.
So I think it comes down to your personal choice over the risks, the pace, etc. If you like the non-invasiveness of gamma knife maybe you could ask about taking the gamma knife route first?
Pedro, my apologies I mean to add my adventure some time ago. I had a bleed in May 2016, it clotted and stopped bleeding without medical intervention. I only spent 4 nights in the hospital and was sent home to recover, although early there was discussion of a possible need to release some pressure with a brain shunt. The steroids and pain killers managed to do the job.
After another angio and MRI I had two options, craniotomy or gamma. Mine was located on the inner side of my left temporal. The surgeon felt I had significant risk of sight issues and possibly seizures post op. He described it as “having to mash through a fair bit of brain” to get to it. I loved my surgeon but it is funny what is normal talk for them just abut floored me! He recommended gamma after all tests were done due to less likelihood of side effects. Basically I asked him if it was him, what would he do. He said gamma. I had total faith in him, had he said craniotomy, I would have gone that route.
I’m now just about 17 months post gamma and go back for an MRI in another 7 months. I still have pulsatile tinnitus so don’t believe it is gone yet. I’m happy with my decision but do sometimes wonder if the risk with the craniotomy would have been worth it to get it done. Hindsight is always 20/20!
Long way to say I trusted my doc and appreciated his honesty in helping me make my decision. Take Care, John.
I understand your concern. My AVM was located deep in my brain, too deep to operate on and because of the bleeding in my brain from my burst/stroke the doctors had to move quickly. So In theory, my family or I didn’t make the choice, the doctors did.
To be honest had they given me the choice to choose which type of operation, I don’t know what I would of picked either because all sound scary and intimidation. Onyx and Gamma might seem less invasive but I really had to work my butt off to get back to where I am today.
I know your concerned with the lasting issue of a scar but think of it as a battle wound! With Onyx/Gamma I did experience quite a bit of hair loss due to the massive exposure to radiation and I lost about 50% of my hair. It took just over 4 months to even start growing back. Lucky, the hair loss was at the bottom half of my head so with my long hair it isn’t super noticeable. I now wear a type of hair extension that has helped me cover up the area with the hair loss. To be honest, due to the circumstance, I had no idea that I was going to lose hair and it came as a big shock to me. It was a hard pill to swallow. My hair started falling out exactly 3 weeks post surgery and the doctors never warned me about it. So you could imagine my horror waking up one day with clumps of hair coming out. It was really scary at the time but now looking back it was kind of silly of me to be so upset over hair.
Over all I’m feeling great! I do have a couple of lasting issues/side effects- predominantly pertaining to my short-term memory. But that has gotten sooo much better- I use methods to help me not forget important things. I also get what is called post stroke pain occasionally, which has nothing to do with my surgery but the fact that I had a stroke- I basically get numbness and some pain in my right hand and/or right leg. This comes and goes every couple of days but absolutely has nothing to do with the surgery, just due to the stroke. I do also occasionally get a headache but such a small price to pay since it could of been so much worse. It really sounds worse than it is! I really feel like I’m 99% back to normal.
I do know that there is a third option which is a type Chemotherapy, have they offered this type of treatment as an option?
PS. I had my one year post-op back in September and I’m happy to say my AVM is 100% gone!!!