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AVM Survivors Network

Treatment or no treatment?

Hi there,

I am very confused and discourage about my situation and I would like to know if someone is/was in a similar situation to mine.

Four months ago I had a seizure and I was immediately diagnosed with a left-sided temporal arteriovenous malformation greater than 3 cm in size in the eloquent cortex with superficial draining veins. The AVM is supplied by the posterior and middle cerebral arteries.

I live in New Zealand and the board at Auckland Hospital decided that, since it didn’t present any sign of hemorrhage and I am a young and healthy 28 years old woman, it is best to not do any treatments because the risk of post-operation deficit is 20% (it means I could lose the vision from my left eye or my speech). My case was presented twice to the board and no one wants to take the responsibility to treat my AVM because they are convinced that something can go wrong.

Since I am originally from Italy, my mother spoke with one of the best neurosurgeon in Europe and after discussing my case with the board over there, they all decided that it si best to treat the AVM as in their opinion, I have a high risk of brain hemorrhage, especially due to my age.

At this stage, I am not sure how to proceed. Why there is such a discrepancy between opinions from two different countries? Shall I leave the AVM untreated as it might never burst according to Auckland neurosurgery or shall I start embolizing it with my 20% risk of losing an eye or speech? What I am also wondering is that if I leave it there and I have a brain hemorrhage, it might be worse than losing an eye or my speech.

I really don’t know what to do.

Thanks for your help

Lara

Get as much information as possible, and if its possible to send your scans or angio images to doctors overseas please do. If you’re a spiritual person, pray on it also. No one can tell you what to do to your body, it’s your call. The risk associated with brain surgery should not be underestimated and neither can the risk associated with a serious bleed. Good luck and God Bless!

Hi Lara, that’s indeed confusing and makes it difficult to come to a decision. For my Daughter the Hospital recommended the Gamma Knife because of her age of 34 or doing nothing. In a couple of conversations with the Professor and his team it became obvious that their recommendation is the result of their own experience in treating AVMs. I have asked for a second opinion from a specialist in Germany. He told me that when I am searching long enough most likely I would find somebody who would even try to operate despite the high risk. So we decided for the Gamma Knife (next week) based on trust in their experience and best practices as well as in their mindset to do the best for their patients.

The other point is, and that seems to be an issue for some of the survivors in this forum, that the health care in most of the European countries is not profit oriented. What I mean is that recommendations are not motivated or influenced by any commercial interests nor costs etc…and the public insurance cannot kick you out of coverage. That was a criteria for us to build the trust in their recommendation.

There was an AVM study (Aruba Study) 3 years ago which also did not come to a very solid result of what’s best in terms of treatment vs no treatment.

Walter

http://www.medscape.com/viewarticle/806297

Hi Lara,
I have a son who is 21 years old and also he was diagnosed with a left frontal lobe AVM about 2-2,5 cm in April 2015. At first the doctors wanted to remove it with surgery but when they had made mor thorougly investigations with MRI and Angiography they said it was to high risk that he would loose his speach. They then decided to treat it with embolisation, but when they were about to make this procedure they saw that the risk was to big in this case as well. All the doctors that we have been speeking to have all been convinced that he should treat the AVM. It all ended up in that we had radiation (Proton radiation) in May this year, he had 2 high doses in the same week and next spring we will be back for the first evaluation. Have any of the doctors said anything about radiation treatment?
I know the situation you are in can´t be easy but dont give up!

Best regards, Cecilia

Hi Cecilia,

Thanks for your reply. Yes, however, because mine is too big, 3.5cm, they said I have to embolize it first and then I can do radiotherapy. It’s very confusing as they said that even with this less invasive treatment there is the risk for me to lose my speech.

Lara

I’m in a similar situation, 3.5cm and Dr says I HAVE to do embolization that is the only choice. He says Gamma Knife is only used to do the ‘finishing touches’ and it should not be used as a first line of defense.

He also says embolization carries 2-3 less risks that craniotomy

My AVM is near the vision on the right side of the brain.

Hi,

I am about to turned 32 and it has been almost 4 years since I found out about my AVM and since I wrote that post. I know this decision might seem weird and crazy to you, but I decided to keep it and let the faith decide for me. I want to live my life normally and fully. It wasn’t an easy decision to make but I didn’t want to put myself through 4 years of pain and in and out of the hospitals and having so little reassurance about the outcome.

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Everyone has to decide for themselves what is best. Prayers for you for a full and healthy life!

I found out that I have AVM when I was 14, completely blocked the memory for 25 years until my AVM embolization was completed 2 weeks ago. . . . I am 100% rn physically, but emotionally & mentally I am mess - every day feels different than the last since the procedure. . . Nothing wrong with your decision & thank you for making the thread:)

Last, post of the day - I promise. Lol

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Hi Mike,

Haha, no worries…So do you mean you ignore it until you had the procedure? So does that mean you are 39 now?