Back in Canada, YAY, now the tough part

So my MRI went as well as can be expected! I was given permission to fly home from France. Of course now I am waiting to be seen by Dr. here inToronto and am anxious. Professeur Cognard said my AVM is huge, his word, and he is not sure how he would/could treat it. Now to top everything off my husband seems to want to return to France and leave me here to raise our 2 young children (I have 19 year old from prev. marriage).
I am utterly afraid and confused. I don’t know what to do, expect, I can’t drive due to seizures, pain, exhaustion. Am staying with my parents temporarily while looking for rental in city! Long, long story, just needed to “vent” a little somewhere where someone might understand. Thank you for “listening”

Okay…I thinks it is time for a primal scream…One…two…three…AUUUUUGGGHHHHHHH!!! Did that work??? Feeling better? My Aunt Gwen was a psychologist. She always recommended taking a pillow and punching it out. That course of action will not solve anything but she swore it made her patients feel better!!! Please know that you are in my prayers!

Wow, AVMs are hard enough without the international factor. There might possibly be a bright side to that, though, since some treatments are approved in Europe before they are in North America...that could give you some extra options.

Before you let a doctor tell you the AVM is too big to treat, make sure you get a second opinion from someone who has experience with AVMs. Some neurologists barely even know what they're looking at when they see an AVM. You can search this site for recommendations of doctors from people in your area.

For the seizures, consider seeing an epileptologist--a neurologist who specializes in epilepsy. They are the only doctors who keep up-to-date on all the seizure meds, so they can get you past side effects and to seizure control the fastest.

I know it's hard to manage all the things you have to do right now. I just wanted to tell you that you have options!

I agree with Barbara a good scream is in order!!!! Hell why not a full on fit! You very much deserve to have one. So much is going on and then having the added stress of a loved one walking out on you puts more stress than you should be dealing with. It makes me mad just hearing this! Deep breath! I wish I could hug you and give you advice that would make everything right. I am glad you are home and in a place more familiar. Please keep us updated and remember a good scream a good cry and a good tantrum all have their place.

Do you have a doctor in mind?

OKay, wow, Suzie. This is all just too much but I am glad you are back in Canada. Let me know if I can help at all. What hospital and doctor are you seeing?

Hi Suzie. I just found a sub-group here on this site...

group/canadaavmsurvivors

Maybe someone in that group knows of an AVM expert in your area! Good luck!

Punching a pillow is a great idea. Just make sure it’s down. The feathers look so beautiful and just a little absurd floating in the air. Plus you can scoop them up and restuff your pillows again and again. Then just vacuum up the fluff. And yes I feel much better afterwards. I feel like I’m carefree again even if it’s just for a little while.

I have not written, or replied, am having a difficult time of everything, I am supposed to be seeing Dr. terBrugge at Toronto Western


Joy said:

OKay, wow, Suzie. This is all just too much but I am glad you are back in Canada. Let me know if I can help at all. What hospital and doctor are you seeing?

One step at a time, one day at a time, Suzie. Just thinking of you. We met with Dr terbrugge too. He’s a very nice man and laid out all our options in a way we could understand.

suzie hardy said:

I have not written, or replied, am having a difficult time of everything, I am supposed to be seeing Dr. terBrugge at Toronto Western


Joy said:
OKay, wow, Suzie. This is all just too much but I am glad you are back in Canada. Let me know if I can help at all. What hospital and doctor are you seeing?

If anyone would like to share there stories u can contact me or the reps from the daisy foundation the website is www.thedaisyfoundation.ca Also we have a great team who just help a little 10yr girl get to the mayo clinic since she had a dural avm…I am on here to see if there are more people with a avm or u had surgury and u can share your story with the daisy foundation,…

Hello Barbara! My wife has gone back and forth with the doctor u are seeing,We were and still helping a 10yr with a dural avm…But here in toronto they couldn’t do anything for her since it was to large…So we raised money has benefits in toronto to raise awareness…Semm like people are not aware of an avm…So our goal as a foundation here in toronto called the daisy foundation are trying to change our health care and people in realize this is a serious illness…So far i have talked with 5 people with a spin avm a brain avm…So being a new foundation since helping this 10yr old little girl i came to realize i want to learn all i can about an avm of all kinds…Since our foundation is here to listen or help in any way we just want to let people know what people go through in the daily life with or had a avm…Cause right now we have helped 1 child were also going to be helping children and adults who do need help…So the doctor again as i said my wife mentioned he was awesome doctor…