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AVM Survivors Network

Canadians

#1

Hello! I was five months pregnant when I had an avm. Im 33 years old.It was five thirty am and I woke up just feeling off. I went back to bed and woke up to my bf shovelling the walk. This was January 2016.i was medivacced out of the only home I ever known and taken care of by my inlaws. In may I gave birth to a healthy Baby boy :slight_smile:

I have double vision and a weak right side. In October I finally got out of my inlaws house and back home. I just had my angiogram on Friday so back to my inlaws I go. I’m from fort mcmurray Alberta, my drs appointments are in Calgary. Anyway I have an avm deep in the central brain. It’s too deep to cut, the glue may or may not work so my dr thinks radiation is the best bet. It’s 6 weeks to 3 months just for a consultation:( I’m pretty bummed because I just want to be healthy for my baby .

My question for you Canadians is how long did it take you to get treatment?

My question to Americans is how long did it take you to get treatment? If I have to make a go fund me account and go down there I will, I have no Shame at this point. I just want to be healthy for baby.

Does anyone else have Diplopia or double vision?

#2

Hi Koko, I’m from Manitoba. I had a bleed in May of this year and Gamma Knife in November. Took a little longer than it would have as we decided which route to go. The fact that the it was over the summer I think slowed things down some due to somewhat reduced staff. I understand the time line would have been similar has I one the craniotomy route, however in that case my risk of significant side effects was high. Calgary and Winnipeg are well known for their outstanding Neuro programs. All the best to you.

#3

Hi there Koko. I’m in Kingston, Ontario and they’ve been incredibly quick with me. My 1 year anniversary for my bleed is tomorrow. I spent time in the hospital then, tried the glue through my femoral artery to my brain in March in Toronto and then had my full on brain surgery in Kingston on June 2nd. The doctors were incredibly proactive with testing and treatment based on their opinion that if they were able to fix it in the first year that it would ultimately be better for my chances for survival. I’m hoping they get to you quick or that you can find an even better, quicker place to get care.

#4

Hi Koko!

Fellow Canadian here, I actually live in Toronto and had my surgery back in September 2016 (just 4 months ago) at Toronto Western Hospital. When i had my initial surgery I had what i like to call dark spots in my vision but after a few short months that has seemed to fade away. The night of my burst, I was actually in cottage country about 2 hours away from Toronto. My friends reacted quickly and took me to a local hospital there. That hospital realized they could not give me the proper care that I needed so I was almost immediately airlifted to Toronto Western by helicopter.

I had my surgery and after a few weeks I was transferred to a rehab where I spent a few months working on some of the affects of the bleed. The biggest impairment is my short term memory loss.

Good Luck with everything!
Kitty

Visual Dark Spots
#5

My son just discovered he has an AVM. It is 6 cm and inoperable. Gamma knife is an option on a smaller part of it but not sure if the possible side effects are worth it. Just trying to find as much info as possible and learning to live with it without it overwhelming it.

#6

Hi 328mom. That must be so difficult for you. My decision was pretty much made up for me so I can’t imagine what you must be going through. If I were you and if at all possible, I would probably get a second opinion. The only thing my family was conflicted with was on which type of procedure to go with. My mom fought hard to get the less-invasive gamma knife surgery and I’m so happy she did.

I wish you all the best of luck for your son!

#7

Hi 328mom I should also add that the procedure I had was Endovascular embolization.

Kitty

#8

My son is leaning toward a second opinion. We are dealing with Drs in Winnipeg and they seem pretty confident in their findings. We are just trying to gather as much info as possible to help us make a decision.

#9

328mom, I’m from Manitoba and was treated in Winnipeg. They are simply amazing people there. My initial was Dr. Silvaggio and then to Dr. Kaufman when we decided gamma knife was the best option. I can’t say enough good about them. I explored the possibility of going to Mayo clinic for a consult but felt so comfortable at HSC didn’t give it more than a passing thought although the cost would have been a factor as well.

#10

JD12 that is so interesting. We consulted with the same Doctors and I totally agree with you. I found them amazing as well. One of my sons co-workers planted the Mayo Clinic in his head and I told him to research it and if it was something he seriously wanted to persue then I would help him. Dr. Kaufman felt treatment would not help much at this stage and I think that is why he is considering a second opinion.

#11

Hi KoKo…I’m a fellow Canadian from British Columbia. I started having symptoms (loud pulsatile tinnitus) in 2010. I saw over 20 doctors including GPs, Vascular, ENTs (3), Internalist and Neuro surgeon. It was only after a bleed in 2015 when I really started to fail. I was semi conscious, falling down, double vision, vomiting, violently shaking and still no luck from doctors until my husband contacted a neurosurgeon in Vancouver and threatened to camp on his doorstep until he saw me. He saw me the next day and admitted me on sight. That was January 2016. I had a catheter embolization for an AVM of right sigmoid dural fistula the following morning. The surgeon said I wouldn’t have lasted another 48 hours. I owe him and my husband my life. I progressed rapidly after that. When I asked the neurosurgeon why no doctor could recognize my symptoms he said it was so rare that most doctors could work their entire lives without ever seeing an AVM, and he was trying to educate doctors and change this. One of his residents is writing a paper on this and phones me regularly for updates. Who knew?

#12

Hi Koko,
I am in Ontario, and my surgeon in Toronto at first did not believe I needed surgery! He told me to go sky-diving!! I requested a new doctor, who performed the Gamma Knife surgery within a few months. Four years after routine MRIs they found two areas they had missed, and after another angiogram, they tried to treat them with “superglue” through another angiogram. That didn’t work because the vein hooked, so another MRI later, I went through the Gamma Knife again in 2012. I didn’t find there was much of a waiting for the surgeries–really just a lot of waiting to find out what needed to be done.
I had double vision and was told I would need surgery to correct it, but it healed itself within six months. I was ten at the time of my AVM bleed but am 20 now.
I wish you all the best!!

#13

Hi kitty,

I am also from Toronto and pretty much gone through the same process as you mentioned. Do you mind sharing what type of AvM you had? And how you feeling now? BTW I’m still suffering from it since 2012…
Thank You,
Angel

#14

Hi!! I’m not very active in this site. So the gluing of at avm didn’t work-it’s to deep and small they didn’t want to risk it. So now they are going to try radiation. Not until September though :frowning: I’m worried but such is life. I’m going to try and enjoy my summer

#15

Hello Angel,

My AVM was a left paramedian frontal parietal AVM. That basically means its was on the left side of my brain. My AVM was treated on September 9th, 2016 with onyx embolization at Toronto Western Hospital.

Besides the obvious memory loss I’m starting to feel like my old self again. It does get frustrating and embarrassing when I make mistakes and forget things but I’m learning how to adjust. I’ve really pushed myself and I started working full time again recently. I try to look at things through as positive light and consistently remind myself that it could of been way worse.
I’m not perfect but I’m well on my way.

Im curious to know what type of AVM you had? How wad your AVM treated?
If you don’t mind sharing how old you are and how old were you when this was discovered?

I’m turning 30 tomorrow :slight_smile: my AVM bust this year at 29 years old.

Katerina

#16

Thank you for sharing your story with me Kitty. Happy birthday to you!
Well, my story is very long as it’s been more than 4-years now that I have artery and Spinal AVM.I was 25 when it burst and I had internal bleeding which left me paralyzed for couple months. having no family support and seeing my little ones struggle was more painful than anything else. The doctors were not able to reach the injured area to perform surgery, I was left with pain killers, hopeless.
Without any treatment I gained my strength back and I managed to research on my own and find a treatment option for my AVM, at Hamilton Jurvinskiy hospital I went for radiation therapy. 2- days ago i had my second-year MRI and can’t wait for a positive result. I live with my husband and two children, have no other family in Canada which has been very difficult in terms of emotional support. Despite of severe burning pain in my left hand, memory loss, vision loss, I managed to go to college full time holding on to my last breaths to become something for my children…

I’m glad to be in touch with you through this website and hear that you are also a positive person. btw have you tried fish oil and nuts to boost memory??
All the best to you dear, and happy birthday once again.
Angel

#17

Hi Angel,

We’re the same age! How amazing is that?

Wow your story is so special. I can’t believe you weren’t able to get surgery.
The option of direct brain surgery was deemed to risky for me because my AVM was buried too deep in my brain. My doctors, after many discussions figured that Arterial Onyx Embolization was the best route to take. Thats where they go through the pelvis into my main arteries up to my brain to treat the problem. I was in the hospital for a month recovery and then was transferred to inpatient rehab for an additional 3 months to get the help I needed. Most of my recovery was there. They were amazing to me.
I should add that from all the radiation i was exposed to I lost quite a bit of hair- I would say about 40-50% was lost- thankfully not all of it. It took 4.5 months to start to grow back. Most of the hair I lost was on the left side of my head at just about ear level to the top of my neck so I was able to hide it quite easily. Did you have any hair loss?

Im so sorry that you didn’t have very much family support. That must of been so tough for you. I don’t know what I would of done without the support of my parents and my siblings, my boyfriend and close friends.
But It’s important to stay strong and positive. I believe it’s what has helped me get better so quickly. Staying positive and understanding that we were dealt these cards for a reason.

Thanks for the memory tip! I’m going to try the fish oil immediately.
And happy mothers day to you!

Ps. My real name is Katerina… Kitty is my nickname that my friends call me.

Katerina

#18

Dear Kitty, thank you for your email.
I’m happy for you that you had successful surgery and you are getting back to your normal life. Being the same age is a sign that We can be good friends.
Toronto western hospital couldn’t help me. Actually I’m a hairstylist and makeup artist so Pretty much i know a lot about natural remedies, hair and skin care.
Massage your hair and scalp with pure coconut oil the night before washing it for ticker, longer, and faster hair growth.
Massage your head with Almond, olive, walnut pure oils at least once a week. It helps memory boost, minor headache, hair/ eyebrow growth. If your hair is oily even after washing, rinse it with a bucket of water with some drops of fresh lemon in it. Lemon gives your hair shine, good smells and makes it strong.
If you need any other tips please don’t hesitate to ask me.
Thank You for mothers day wish.
Have a good night,
Angel/ Freshta

#19

Thank you for the tips! I will try some of them for sure.

You mentioned that you were left paralyzed… is that still so? Or are you able-bodied now?

You are so strong!