Diffused brain AVM

Has anyone been treated for a diffused AVM with radiation and it was successful? My 11 year old daughter has a diffused AVM in her motor cortex so surgery is out of question. Please I need some hope
Thank you

2 Likes

My kid had gamma knife radiation for a grade 4 diffuse AVM. So far he has had only complications from it :frowning:

Oh no;( what type of complications? So sorry I hope everything gets better!!!

I think they want us to just monitor the AVM or radiation I don’t know what to do

@Bella

Welcome to AVM survivors!

I’ve moved your post to a different place so that it might get some visibility from some of the people who I think have had experience with diffuse AVMs.

From reading your initial post, it sounds like your daughter is being offered a possibility of radiotherapy or that the recommendation might be to just “monitor” the AVM. My understanding is that sometimes it is more risky to do an operation than to leave an AVM alone and we do have a bunch of people here who have been given that as their best option. While I think we all prefer the idea of having an operation to remove something that is dangerous, sometimes that activity to excise it or to embolize it or to treat it with radiotherapy brings a risk or a certitude of doing damage to your brain. When this is the case, the recommended path can be to monitor it.

If you have a bleed during the monitoring, then it may be appropriate to have an intervention to remove the AVM, since damage is otherwise going to result. Sometimes this is the better course of action: to have a better life.

There is no clear clinical study which tells us when we should be better by having surgery or better by leaving an AVM alone, so it is always a difficult choice whether to choose to act now or not.

Other than your initial question, do you have any other questions: do tell us how you are. How was your daughter’s AVM discovered: has she had a bleed already or is it an incidental finding to some other investigation?

Sending you lots of love (and pardon me because it is nighttime over here and I shall be quiet for several hours!)

Richard

Thank you so much for the detailed explanation. My daughter had a brain bleed and stroke that was horrible, 4 months in hospital and physio. Seen her go through so much scares me that she could bleed again. I have a Surgeon, dr Michael Lawton look at her images and advices full craniotomy would be best but we are from Canada and the cost to us would be around 400 000 to do this and is still extremely risky. Our doctors here are still trying to find a more compact area in her diffused AVM to tackle it with radiation so there is still hope!!!

1 Like

I think we all have Dr Lawton down as the expert on these things, so he’s as good as it gets when it comes to advice on what to consider and what not to consider. It’s a tough situation to be in.

Feel free to talk about anything you need. It’s what we’re here for. I’ll catch you tomorrow.

Richard

1 Like

Just wondering where your daughter is being treated? The team at CHEO in Ottawa saved my life when I had my first bleed in 2006.

1 Like

She is being treated at Toronto sick kids

Can you get a referral to the team at Toronto Western? They have a team of doctors who specialize in AVMs. Dr. Michael Schwartz and Dr. Tomas Dobrocky, to name a couple.

2 Likes

That is a great idea. I will ask my doctor and see about a referral. Thank you so much!!! I wonder if my family doctor can send us there.

2 Likes

Your family doctor can likely give you a referral, mine referred me to Dr. Schwartz in 2007 when I wanted a second opinion.

Hi Bella
I have a 16 yo daughter with a diffused avm.
It was found in utero. She had a craniotomy at 4 months old, and it was considered resected (totally removed). When she was nearly 6 it returned. Between the ages of 6-15 e were basically just monitoring it because it was too large and complex to treat. Plus the drs didn’t want to risk radiation on such a young child.
She started to become symptomatic at around 8 until they finally decided to try gamma knife.
Last year she had her first round.
Quite honestly she didn’t respond well. She developed tonic clonic seizures, lost use of her left hand, walks with a pronounced limp amongst other things.
She couldn’t go for her second round of treatment because she wasn’t stable enough.
It’s been over a year, and we were supposed to travel back to the US but there had been a number of changes in the American insurance industry and we no longer have coverage ( we’re coming in from Israel).
We’re still in the process of looking for other treatment options, but haven’t really been getting anywhere.
I can understand the frustration of consulting with a doctor and not being able to follow through with him ( especially someone like Lawton who is held in such high esteem). ( my daughter was initially operated on by Dr Spetzler before he retired. Lawton then took over her case but it was passed on to neuroradiation because he said it was inoperable. Where we live the drs don’t have the experience treating avms the way the do over there so treatment is incomparable)
Wishing you much luck on this journey.

2 Likes

You’ve both spurred me to have a bit of a Google and a read about Diffuse AVMs / Cerebral Proliferative Angiopathy, which seem either to be the same thing or very closely related.

The realisation I’ve had is that effectively a diffuse AVM is different from other AVMs in a number of regards but notably that there is good functional tissue in between the AVM sites. Now, I’m a patient, same as anyone here (i.e. I have no medical training whatsoever, so treat what I think I’ve understood with appropriate caution) but my reading of that is that to aim to treat the whole [set of] AVMs must have a higher risk of collateral damage to brain function than for other kinds of brain AVM. So I think that should be borne in mind when reading the success stories of those of us with more discrete AVMs.

I hope these thoughts help in the right way.

Very best wishes,

Richard

4 Likes

Thank you!!! I pray that of surgery is the way I will find the funds. If nothing can be done I pray she doesn’t bleed again. I was looking into Canada paying for treatment in the US if we can’t do it here, so far seems complicated.

1 Like

Thank you so much! I hope your daughter is doing better as well is so hard to see our kids suffer;( I want Dr Lawton to do this surgery so I will keep on looking for ways to do it. All the best :purple_heart:

1 Like

Were is is your daughter’s AVM located? I hope with time her symptoms improve

Hers is located in the right frontal/ parietal lobe

1 Like

In 2019, my daughter, then 10 and asymptomatic, was diagnosed with a diffuse right frontal AVM. Surgery was not an option. We held off for 4 years to allow her to live as normal a life as possible. In 2023 we decided to move ahead with radiation due to changes noted during her routine MRI updates.

Her planning angiogram went horribly: she had hours of nausea and vomiting and a very tiny stroke, as a result. Radiation 2 days later was a breeze. The following week, upon return to school, she developed a headache and intermittent face droop and numbness that traveled up her arm. So, we went to the ER at home. After a few days she was headache and numbness free. She’s been well ever since. It’s been 4 months. We go back for follow up in June, though changes to the AVM are expected to be slow: 2-3 years. The radiation won’t obliterate the AVM but is hoped to change the AMV to help inform next steps, if any.

Knowing that the AVM was changing the way it was, this seemed to be the right decision for us.

Good luck to you!

2 Likes

Can I ask why obliteration is not expected? Since some of us went the radiation path, we pray and hope for obliteration through radiation. Thanks