Helpless, nervous, and seeking support

Hi all,

This is the first time I’ve ever joined and participated in a online support community.

My name is Amanda, I’m 26 and live in Ontario, Canada. A little about my journey so far:

I was born with what was diagnosed as a “blood vessel tumor (hemangioma),” which now has been diagnosed as an AVM (September 18th, 2017). It is located in my right cheek. I’ve never had any major issues my entire life. It could not be removed or touched as a child as there were many risks associated such as blindness, paralysis of the face, etc.

In July of this year my right cheek had swollen to the size of a tennis ball. The ultrasound read 4cm. A week later it grew to 5cm. Since then the pattern I’ve noticed is two weeks of hell and swelling. I can’t eat, talk, sleep, and the pain is excruciating. It stays like that for about 2 weeks. After a week and a half it swells back again.

I have had many emergency visits to different hospitals, have visited different surgeons, with each surgeon telling me they have no idea what to do or who to refer me too. I finally found a team of surgeons at Toronto General Hospital who said they would take on my case. I had an MRI very recently and had the follow-up appointment yesterday, the 18. The team of surgeons have said there is no one specialized in the hospital to deal with my case…it is simply very rare and unusual. They have been trying to get me into the Vascular Malformations clinic at Toronto Western Hospital. They’ve been having a tough time. They don’t know when they will hear from the clinic and haven’t given me a time frame.

I’m lost and trying to hold onto whatever hope and courage I can summon. I spent my entire life looking for someone to take on my case in Ontario, and have been denied over and over again.

I’m so glad to have found this network of awesome individuals fighting their own battles.

Does anyone have any advice? Are there any surgeons that anyone can recommend? I’m now going to fight for treatment outside of Canada as my last hope is the AVM clinic at Toronto Western Hospital. If they don’t approve my case there’s no other resource here for me.

Thank you for taking the time to read this! I would really appreciate any feedback!

Amanda

1 Like

Hi Amanda, welcome to the site! It is really a great place with a lot of people with a lot of experiences dealing with these things. I have an AVM in my left temporal that bleed last May, prior to that I had no idea what an AVM was. I’m from Manitoba and was treated with gamma knife in Winnipeg last May. A great group of folks in the neurosurgery unit. You present an interesting dilemma in respect to treatment options and sure sounds like you’re having a heck of a battle with the AVM. My suggestion, and you mention it in your post, would be to gain your doctors support fro treatment in the US. OHIP would have to be involved as they would need to be the factor in costs. I would do some more research in Canada as well, starting with London, and would look at Calgary and Vancouver as well. I’m sorry I couldn’t be more help, most of my knowledge and research dealt with brain AVMs. Take Care, John.

Hi mandyp, I feel for you and we are all here for you, I had an avm removed 30 years ago at UCI medical center in Irvine California at zero cost to me, see if you can get ahold of them, also, I now live in Arizona were I am a patient at barrows neurological institute in phoenix, not only do they have a program for this type of situation, you can forward records to them and get free advise via telephone conference with multiple doctors, these are two that I know of and there are others that are willing to help, just need to search them out, hang in there and be strong, your not alone and we are all pulling for you, take care EYY, : )

1 Like

Amanda,

Welcome! I would have a look around the Facial AVM posts that we have and consider joining the Facial AVM group.

Do take in a number of views but I know of a young lady in the UK who travels to the US for treatment on her Facial AVM. I’ll find a link to her story and pass it to you but she is seen by Dr Wayne Yakes. See here:

Dr Yakes uses a technique involving ethanol embolisation.

We’re all here to help you. Just tell us what’s going on and we’ll try to support.

Best wishes

Richard

This is the young lady I was thinking of

Hi Amanda,
I am also from Ontario Canada, and I had my surgeries for my AVM at Toronto Western Hospital (and I had a second opinion from a doctor at Sunnybrook hospital in 2007). Now, my AVM was in my brain, which is obviously an entirely different area, so I don’t think I can offer any advice for a surgeon because my doctor was a neurosurgeon. But if you want to talk to someone who has dealt with some of the same hospitals, you can always message me!
Good luck!
-Julia

Hi Amanda,
I also have a hemangioma in my throat that will be dealt with hopefully next month in Chicago at the University of Chicago Hospital. I just had a craniotomy for a DAVM in my brain at the same hospital. Dr. Lee did the embolization, Dr. Awad (neurosurgeon) did the craniotomy, and Dr. Portugal (ENT) will be doing the throat hemangioma. They all work well together and between them they have over 75+ years experience and at least 5-6 medical degrees. Also, all three are very nice people who care. Never hurts to ask for a second opinion.

If you can’t find a surgeon(s) for your situation, maybe your medical coverage will consider treatment in the U.S. I think Chicago Illinois might be closer to you than California.

I wish you lots of luck, sounds like you’re going through hell right now with the way it’s swelling and going down. I can’t imagine the kind of pain you’re in.

@mandyp Hello and welcome to the group. I live in California and had my work on my avm/davf at Stanford.
I once read a book about a man who had cancer who lived in Canada and the drug was not offered there because of the costs and the greed of the pharm companies. Somehow the man was able to get Canada to pay for him to come to the USA and get treatment.
Can you petition to get treated in the states? In the Bay area we have wonderful doctors who specialize in these at Stanford ( Dr Michael Marks) and at UCSF ( Dr Lawton) -
Do they have social workers to help you navigate?
We have something here called Standard of care and it does not seem like you are getting it. There has to be a way to get you to a doctor who can help!

Hugs
Angela