Hi everyone,
Just wanted to introduce myself, my name is Loulou, I'm 30 and living in Montreal Canada. My AVM was discovered in 1989 when I was 5 living in Lebanon, I had a hard time using my left arm and leg and after many tests, they determined it was an AVM and we moved to Canada so I cn receive proper support. My AVM was not removed because of it's location, I have a partial disability on my left side: limited use of my left arm and leg along with a limp. My AVM hasn't bled yet. I came to this website because other than having MRIs every couple of years the doctors in Montreal haven't been great at providing information and found this website when I was searching for information. I was thinking of visiting the AVM clinic in Toronto, does anyone have experience with the clinic? My main concern is pregnancy, how dangerous is it to be prenant with an AVM? especially at my age. I'm happy I found this community, because as supportive as my family is, it can feel very lonely going through this alone.
Looking forward to getting to know all of you
Thank you
Loulou
Hello and welcome to the group
This group is very supportive and knowledgeable
My AVM is a fistula in my head by my left ear. I see an expert at Stanford and he only see's about a dozen people a year with them.
What I have learned is you need an expert who has done many of these embolisms
I am not sure about the pregnancy but I was told it was dangerous for my blood pressure to go up
You can do a search on avm arm
http://www.avmsurvivors.org/main/search/search?q=arm+avm
You might also search pregnancy
I would personally go to the experts in Toronto all that can happen is you are where you are today-
We have to be are our advocates make sure you bring someone who can write down everything and look on here to see what questions to get answered
I asked my doctor
How does he know when to use glue, onyx, or coils
How many people has he seem how many years he was doing it
How many people died getting an embolism ?
How many people had a stroke?
How long do the expect the surgery to take?
What is the recovery?
Do they expect it to be controlled by one embolism?
Thank you Angela! My AVM isn't in my arm but it affects the mobility of my left arm and leg because it has damaged my nerves. You are absolutely right, we need to be our own advocates. Thank you so much for your advice and for the sample questions, it was very helpful.
LouLou
sorry is the avm on your right side of your brain?
Before my fistula I had a massive stroke that was kinda in the middle of brain but it affected my left side of my body
I was able to recover with speech and movement but my strength is still bad after 3 years and lots of pain if you did not know me you might not be able to tell
I can relate to issues with one side but for me its just been three years
Ange
Welcome, Loulou, we have a Pregnancy and AVM group you may wish to join -- just click on "Groups" at the top of the page to find it. You may ask wish to ask the Canada group about Toronto.
Welcome Loulou!
Sorry i don't know the location,severity and complications caused by your AVM.because I've facial AVM.May b i can answer some of your questions???
I am of the same age approximately and I've 2 kids.Although I had really tough pregnancies,I faced sever bleeding and pressure on my neck but by the grace of God today i am mother of two.My 1st pregnancy was really very complicated and high risk due to severe bleeding from my ear n gums throughout nine months.But before planning the 2nd one i went for a couple of Embolisations,So that made my 2nd pregnancy a bit easier.Dancermom is a very sweet n supportive member of our family so according to her u must join the group "pregnancy n AVM".
Hi Loulou...I do not have answers to your questions, but I wanted to say hello and hugs to you. I am less that 3 weeks post op of my avm being removed (cavernoma) and do have limited use of left arm but getting better. I would seek out any and all expert advise from doctors especially since in your area or close by. I was lucky to have a well known Neurological hospital (Barrows Neurological Institute) in my city. If you are able to get expert advise,consultation, you need to take it. Just my two cents. I wish you well and a long lifetime of happiness.
Hey! Ya it's on the right side of my brain, it doesn't cause pain on my left side of my body I just have very limited use of my left arm and left leg, they feel like jello when I'm really tired. The octor told me even if I remove the AVM the damage to my nerves can't be undone...
Thank you :)
Thank you1 That is some really useful information :)
Thank you! I'm definitely going to try and get an appointment at the Toronto clinic. Good luck with your recover :)
One thing that really helped me post stroke was introducing coconut oil in my diet every day- Our brains need fat to work and I lost weight
Google benefits of Coconut oil. I also took tumeric and this combo is finally when I started to improve
I imagine post embolism you can do PT for your arm and left leg and gain some improvement.
For me I knew I was weak but I went to a new PT yesterday and she tested me differently than all my previous PT's and one is to sit and have one leg out while you try to stand with just the other leg.
I could not do it at all with my left leg. I used to weight lift and squat 175lbs for my normal work out
The PT said that is probably why I can walk. So next week she will have a plan of attack for me
I am glad you are going to follow up with another doctor
Keep us updated
Angela
Hi Loulou, welcome to the group. I’m sorry to hear about the issues you’re having. Just wanted to say that my experiences at Toronto Western Hospital have been very positive so far. If you’re not satisfied with the information/treatment you’re getting so far, probably a good idea to get a 2nd opinion there.
Hi LOulou
I just last month had an arteriogram at the Toronto Western The team there is outstanding. I saw Dr Tymianski. He is patient but, very importantly, knowledgable about AVMs. Toronto Western also has seen so many more people with AVMs than other hospitals. You should ask for a referral for TW where they have an AVM clinic.The DRs have far more experience with AVMs