A bit lost

It’s been a couple of months since my son’s AVM diagnosis. We did an MRI and Angiogram and finally had the neurosurgery appointment. I don’t know of it was the long wait and anticipation that just made the result worst. The AVM is big, deep and sits behind the left eye, it has a lot of ramifications and with that they don’t recommend surgery or intervention. I’m a fixer and it’s killing me that there is nothing to be done just hope it doesn’t rupture, hope he doesn’t die sleeping or from randomly while playing at school. I feel lost and in suspension ever since that first seizure and now the no solution left me here in limbo.
Sorry for the long rambling,.just feel so tired and lost trying to pretend everything is fine and moving along with life.


I remember those days waiting for appointments a month or three apart trying to get a diagnosis. Only to leave those appointments more confused and with more questions. Then when we finally get answers, it’s like the worse case scenario was delt to us. Too complicated and diffuse to remove. I just want my son’s AVM fixed, please! I know your fear. But it’s been 12 years since our diagnosis and so far so good. The AVM is behaving.


Sorry to hear your news. I was wondering if you considered a second opinion. There are a number of spots that will do it remotely with the scans etc…and I think of Barrows in the US at top of mind. I know that is a long way from home, but it may help put your mind at ease. I guess the risk is that they have another opinion you wish to explore further…I wish there was more I could offer to help. Take Care, John.


HI Moriko

Reading your description it sounds like your son has Wyburn-Mason syndrome.

I have this and have been diagnosed with it since 4 years old. I’m now 45.

Once diagnosed I underwent lots of angiograms and other tests to ensure there was no further spread. There wasn’t. And there very rarely is. By 10 years old I had lost sight in that eye.

But really, that’s all WMS has done to me. You’re right: it can’t be fixed. But it is perfectly liveable with.

Since diagnosis it has remained dormant. It has never ruptured and I have never had a bleed (nosebleeds, yes, but even they have stopped now). I’ve lived a ‘normal’ and fulfilling life, and never had the threat of the condition hanging over me. I know the same cannot be said for others living with AVMs.

I appreciate it is scary but rest assured there are many, many of us who cope with Wyburn-Mason and live a happy and normal life :slight_smile:

If you would like to reach out to more people living with WMS (there are not many on here; we are a rare breed!), come and join the WMS group I set up on Facebook. You’ll get lots of answers and reassurance on there.

Take a deep breath and know that your son is a unique human being who will have an incredible story to tell. And also know that you (and he) are not alone.

Dan x


Hi @Moriko

It’s good that you found us and I hope we can encourage you along the way. I have to say that I am very encouraged by Dan’s info about Wyburn Mason Syndrome: I understand he has quite a large community of WMS patients that he is part of on Facebook and if your son were to have a WMS diagnosis, the relative stability that Dan is reporting (and among those he knows) seems very encouraging. And I have to say Dan came immediately to my mind when I read your story.

Even if your son doesn’t have a Wyburn Mason diagnosis, you are still not alone: we have a number of people in the same circumstance of too big, too deep, too complex an AVM mid-brain that is too invasive to proactively operate on and a good proportion of the ones I can think of are adults, so again it may not immediately mean that your son is in danger.

I’m not sure if John’s suggestion to seek a second opinion is something you’d want to do but it is a route you could follow. It is possible to send scans, reports etc to the major neurosurgery practices in the United States via their website “Remote Second Opinion Programs” for something like $200 or $400 to gain a second opinion on whether proactive surgery of any kind would be recommended. It may well be that they agree with your existing neurosurgeon but it is also possible that they feel more able to do something than your local hospital.

However you go forwards, please know that we are a community of people in very similar circumstances, we completely get the shock of a diagnosis and at some point I hope you’ll find it easier to rationalise your situation. It definitely takes time.

I hope some of our thoughts help you to do so.

Very best wishes,




I can understand you just want this fixed but sometimes the risks are just too big.
What does your son want? How old is he?
I was 19 when I had a big unexpected bleed. There is life with an AVM (over 30 years now) but it’s hard. Much harder than I ever imagined.
If I’d known about my journey I would have turned the life support OFF.
On a positive view, I live independently and make my own choices. An interesting book I read was ‘me, myself and eye’ where a guy had an unusual eye problem.
Keep doing research so that you can help your son make informed decisions and good luck.


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This is Dan, @memyselfandeye


Hi Timb!

That will be me :slight_smile: (my profile pic is a give away)

Hope you enjoyed the book!


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I know what you are going through, my son was diagnosed with an incurable AVM (it was a grade 5) when he was 15 years old. Since then he had at least 12 bleeds but none of the bleeds had any neurological impact. When he was 31 yeast old he had a major bleed that left him disabled. We were seeing one of the best doctors in the world, he is in NYC and he always told us his AVM could not be cured. After he had the major bleed he told us he had recently met this brilliant surgeon in Germany. He was successfully performing surgeries on AVMs like my son’s. We sent him the fils and had a zoom meeting. He told us he can cure him so we went there 3 times and after 3 surgeries our son was cured. He is still disabled and during the last surgery he was affected with short term memory but it’s been 5 years now and his AVM is still gone. Michael’s AVM was in the corpus colosseum.
The doctor in NYC is Dr. Alejandro Berenstein, and the doctor in Germany is Dr. Rene Chapot. Please contact Dr Berenstein, he is a wonderful doctor. Let me know if you want to connect. I will be glad to answer any question.


I have to say, I’ve heard Dr Chapot’s name several times in recent years – all very supportive :+1:t3:

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