Hi there, hoping you all doing great! Recently I was diagnosed cerebellum avm in Toronto Western Hospital. I had extremely headache and vomited many times, but I thought it was because of the nervous, so that I didn’t go to hospital right after. However, the headache didn’t disappear after two days, so that I went to ER in Toronto General. They gave me a CT scan and told me my brain had bled. Then I was transferred to Toronto Western by ambulance ( first time doing this, pretty exciting lol ). In Toronto Western, the doctor told me I have avm, and this was the first time I acknowledge this disease. I did another CT scan, MRI and embolization there. Now I’m waiting for my next embolization and gamma knife, which will be in Feb.
And do you guys live alone, I mean I’m a student of U of T St George, I’m really concerned re-bleed after gamma knife ( although there is only 4% per year and is decreasing with time according to my surgeon), so is it ok to live on my own? Or probably I should find a roommate or a homestay.
Sorry for the super long posting, hope you guys have a goooooooood day and night, if there are any gramma mistakes, please ignore them, I’m an international student and English is not my first language.
Jimmy,
Hi! Welcome to avmsurvivors! It’s great you found us!
I haven’t had a bleed (I discovered my AVM because I could hear it) but I know that when I got my diagnosis, it bothered me a lot that I might have a bleed. My work wanted to send me home (and have me work from home sometimes while I was ill with it, because it was making me a bit unsteady on my feet and I think they didn’t want me falling down the stairs at work – too much paperwork, maybe!) but I felt safest being at work than spending 8h a day on my own at home. It doesn’t feel like the most sensible thing to be alone for long periods, does it?
So… I think as a minimum you could do with someone who will check on you from time to time; otherwise getting a roommate is a good idea, I think. Hopefully, the interventions you’ve already had have reduced your risk of a bleed but maybe your risk is still above average for someone your age until your gamma knife has worked through for a couple of years.
The other self-help things you can do are to think about what you eat, drink or smoke and avoid stuff that spikes your blood pressure; and the same with the level of exercise you do… keep that in sensible, moderate, not pushing or straining, levels.
Hope some of these thoughts help.
Very best wishes,
Richard
Hello Richard,
Thank you for your advice and kind words. I identify with your situation. I still go to university but somewhat with less course loads. As long as I am busy with my assignments and exams, I barely think about the avm.
You know I’m an international student, and I have no relatives in Canada. It is kind of cruel for a 20 year old student, but I believe I can handle it. I’m trying to find a roommate next semester.
After I was diagnosed avm, I stopped going to gym, and replaced any sports with taking a walk after dinner. I’m not a smoker, and I don’t drink alcohol. I believe I should not stay up until I finish my assignments, so that I go to bed at 11 everyday.
Again, I’m really appreciate your help and advices. By the way, do you mind if I ask is your avm obliterated successfully? Take care and have a good day.
Jimmy
Jimmy,
It sounds like you’re doing all the right things, so keep on. I agree with you that keeping suitably busy is a good way not to spend your time worrying about stuff.
Being so far away from home and family is remarkably tough but I don’t see why you can’t get through it just fine. We’ve certainly got a decent contingent of AVM @Canadians and I think a good proportion of those in Toronto, so we could possibly find one or two folk to spring a visit if you ever need another AVMer to talk to face-to-face.
I believe my AVM is fixed. I had an embolisation (only – no craniotomy) in April 2017 so am carrying round more than the average amount of glue in my head 
. It all seems to work.
The other thing that bothered me when I was pre-op was that I might have a bleed at work or on the bus and have people around me who didn’t know me and didn’t deal with a stroke promptly. I found I relaxed about that a bit by having a medical wristband made up. I had a rubber one made up, like you used to see many people sporting a rubber wristband for all kinds of reasons. It was perfectly durable and gave details of my name, hospital i.d., condition and the simple instruction to dial “emergency”. It helped me not worry about being found on the floor and nobody knowing what to do. It was £12 well spent.
Best wishes
Richard
Hi Richard,
Glad to hear that yours was fixed. Of course I should get some wristbands prepared. Thank you for the wonderful advice.
Jimmy
Hi Jimmy! John here from Manitoba, so next province over but somewhere around 2400 km of lakes, trees, rock and then some prairie! I had a bleed in my left temporal from an AVM in May 2016, and had gamma knife in November of 2016. I did not have embolization, straight gamma, and have been advised of success.
I can only imagine some of the pressure being a long way from home with no family around it has to increase the stress significantly. Don’t worry about leaning on us in this group, we have a ton of experience between us all. While supporting each other on line is quite different than sitting beside someone, the folks on here understand the AVM by living it as a patient or caregiver. That understanding gives us an appreciation the fears, challenges and questions.
It is really great you are here with us, stay strong and look forward to your net embolization and gamma knife as a stop on the journey! Take Care, John.
Hi Richard,
The idea of the wrist band is fantastic and can help reduce the anxiety.
Have you looked into active emergency devices or wrist bands? Those that call a center, 911, or family members with a press of a button?
I am very curious about this, particularly in Canada.
I’ve not. At the time I was worried about this, I looked upon it as a temporary situation and my embolisation would render a more permanent or expensive solution unnecessary. So I’m not sure I needed such a thing. However, I recognise completely that others are in a more long-term situation and might benefit.
I did buy about three separate bands over time to update the information but I looked upon £12 each time as a perfectly sensible level of spend for my peace of mind.
The other things you can do are:
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Enter your key medical information in the Health or Emergency Contact information in your mobile phone, if you have one.
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In the UK, an entry “ICE” in your phone contacts list (e.g. for old fashioned “brick” phones) is interpreted by the emergency services as “in case of emergency” so you can store an emergency number even if you don’t have a smart phone. Canada or elsewhere may have a similar approach.
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My old smartphone didn’t have an emergency contacts feature, so I edited a picture to use as the lock screen image to put my wife’s phone number on, so you only needed to switch the phone on to see “Richard’s Phone” and “ICE 07777 770770” (made up number in this example) to point the ambulance service to my wife.
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And I talked openly to the people who I worked with. In the company where I work, we aim to have a world class safety culture and wellbeing is an extension of that, so we regularly have discussions on safety and/or wellbeing and I introduced a topic on stroke with a number of groups of people that I worked with and revealed a bit about my situation. It’s amazing what other people have going on but never tell you until you start the conversation on these sorts of things. I’m completely convinced we should talk about health issues with our colleagues so much more than we ever do, though I also recognise that other work cultures may not be as open, encouraging or may (for some neanderthal reason) start to limit career opportunities for people.
As always, I hope anything in this might help others.
Best,
Richard
Hi Jimmy. Welcome to the group. As you’ve already seen, there are lots of wonderful people here to support you. First let me say, welcome to Canada! What are you studying at UofT? Where is your home country? I live about 70km west of Toronto. The AVM survivor in my family is my 13 year old daughter. Her AVM ruptured very violently and suddenly just over 3 years ago. Hers was also in the cerebellum, but her bleed was described as catastrophic by her surgeon. If we hadn’t been close to a hospital when it happened she would have died because she stopped breathing just after emergency services reached us. She then was rushed to the nearest hospital to be intubated. Then on to the children’s hospital for emergency brain surgery. After that, 3 months in the acute care hospital followed by 5 months at the rehab hospital for kids (Bloorview) in Toronto. As you can see it was quite the nightmare. She lost all of her functions for months and required a tracheostomy and feeding tube in her stomach. We are extremely lucky that about 5 months after the bleed she finally emerged fully from her “mental fog” or reduced conscious state and started to communicate with us again. Then she started to eat and talk. Walking took much longer but she has finally regained independent walking too. Unfortunately she will never be the adult I hoped she could be. She will have lifelong deficits because of the bleed.
I’m glad you are under the care of the skilled surgeons at Toronto Western. I’ve heard they’re experts with AVM. Did they tell you why they are not recommending removal of the AVM by surgery? I only ask because the risk of rebleed once an AVM has already bled once is quite high. I don’t want to scare you more than you are, but I wanted to share with you how serious the rupture of a cerebellar AVM can be. The bleed can compress the brain stem like in my daughter’s case. We’re very lucky that she suffered no permanent damage to her brain stem. I think you’re doing everything right and have a great attitude towards managing your situation. I just want to know that all options were laid out for you. Take care, Jimmy!
Hello John,
Glad to hear you’re avm free! When I was in hospital, they diagnosed that there was a venous aneurysm on the margin of avm that they believed was the source of bleeding, so that I did embolization. And I will have another embolization before gamma knife, what doctor told me is that they will find and obliterate any fistulous components, and improve the success rate.
Thank you for the kind words.
Jimmy
Hello AllieG,
I’m really sorry to hear what happened to your daughter, glad she’s doing good. I have been in Toronto for 3 years, and I study applied mathematics in UofT. I’m from China.
I asked doctor why they are not doing open surgery to treat my avm. What they told me was that they have a conference to discuss my situation, and surgery is the first option for avm, but every avm are different, and mine is grade 4 (3cm, near cerebellum nuclei), so that surgery is too risky for me. And after the discussion of all the possible treatments, they decided embolization and gamma knife. I know there is chance of re-bleeding, the doctor told me that there is 4% per year and is going to decrease with time after gamma knife, he also told me that do not let it bother you everyday, everyone has risks, you just add an extra risk. Furthermore, they will perform embolization prior to the gamma knife, in order to reduce fistulous components.
I trust the doctors, and I shall keep optimistic attitude towards to my treatments. I’m really appreciate your advice and kind words.
Jimmy
Hi again, Jimmy!
That all sounds very good—your treatment plan. I’m glad the doctors are taking good care of you! Best of luck with your procedures and studies. I hope you like living in Toronto.
Allison
Hi AllieG,
I love Toronto, I have lots of memories here. To be honest, I have traveled to many cities in Canada like Niagara Falls, Kingston, Ottawa, Montréal, Quebec City, etc. All people are extremely friendly, I’m really impressed.
Jimmy
Hi Jimmy,
I had a successful surgery at Toronto Western Hospital back in September of 2016 and I have nothing but wonderful things to say about my experience and my team of physicians and surgeons.
After my surgery, I stayed at Toronto Western for roughly 2 weeks and then moved on to an in-patient rehab for a few months and then out patient rehab following that. At the time of my burst, I had just bought my own house, but I was still living with my parents until my move out day and during that time, I unfortunately had my burst. BUT, It was a blessing in disguise. Without the support of my parents and the rest of my family I do not know how I would of gotten through everything. I can’t imagine the thought of having that burst had I been home alone.
My experience may be different from yours, but I do not believe I would of been capable living on my own after surgery. My vision, memory, motor skills and general movement was affected after the surgery (all which are back to normal now). You may walk out of surgery 100% normal but if not, you may need to prepare yourself and have a back up plan.
I wish you nothing but the very best and hope everything goes well for you!
Katerina