I don’t know what to do!

Hey there!
I’m Yuli, Colombian living in Australia, I’m 35 years old. I have a AVM grade 5 in the left occipital side of my brain, diagnosed more than 10 years ago but until 4 years ago I started paying more attention to it since I didn’t understand the severity of the diagnosis; I still don’t understand many things and that is the reason why I came to this group. As for treatment, my only option is radiation due to the large size of the malformation. It really scares me to think about this and I’ve put this to the side so many times, for a long long time. I would like to receive advice and perhaps read the experiences of people who have get done radiation as treatment. I don’t know what to do and I’m really scare at this point because my symptoms are getting worse and worse every day. Is not fare to live a life like this.
Thank you all.
Y

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Hey @YuliM

We have lots of people who have had gamma knife radiotherapy to treat their AVM, so you are not alone. I’m going to let some of those guys tell you about it, how they got on with it but do feel free to ask any questions you like: this is what we are here for.

The other thing I’d say is that we all arrive here feeling just as uncertain about the future as you do at the moment. I had my right occipital AVM treated by a catheter embolization procedure but I can say that I was just as perturbed by the direction that my health had suddenly taken. This was 7-8 years ago now, so I’m nicely through the situation but I’m crazy enough to hang around here to try to offer a virtual hug to new people like you.

Welcome to AVM survivors! It’s great to have you find us!

Richard

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Hola @YuliM . Mexicano aquí reportándome. My son was diagnosed with AVM July 7th 2023. He was supposed to get it extracted on January 17, 2024 after several imaging sessions but during surgery the Neurosurgeon decided not to proceed as he felt he could have left him paralyzed on right side. Therefore on the 19th of this month March he received Gamma Knife treatment. Everything went well. He got no headaches, at least not, so far. He’s under steroid treatment to reduce inflammation. Overall he’s doing really well. I do believe that researching for the best treatment at the best location with proven professionals really made real difference and a difference in my mind. If you do your research Yuli you’ll be just fine. My son only received one treatment and you might receive more than one through Staged treatment because I think you said yours is on the bigger side > 4cm. Best of luck and I’ll pray for you. Bendiciones !

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Hi there! I have an AVM grade 4 in an eloquent part of my brain. Diagnosed June of 2022. Because of the location and size, radiation was my only option. they decided to break my radiation into 2 treatments 6 weeks apart. The scariest part is what I put myself through by worrying about what MIGHT or COULD happen and the mask you have to wear to receive the radiation. The radiation itself was fast and painless. I did experience some very mild headaches and dizziness for a couple of days following the treatments. I did a round of steroids to help with inflammation. Other than that, there wasn’t much to it. That was almost a year and a half ago. I went back for a follow up MRI and my avm had shrunk by about 20%. I am due for another one in July. I know it’s scary, but don’t freak yourself out by overthinking things. Look at the facts and make the best choice you can. You know yourself. You’ve got this!

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First, I am so sorry you have this terrible rare disease. My son has it. He has beaten it but will live the rest of his life with the effects of it. His AVM burst and left him with many issues amongst them right side paralysis. I share this because my advice is to take action, whatever that is for you. Second, I write to share hope. My son treated his second growth with radiation and it worked!

If nothing else, taking control and action (whatever that is) will bring some peace. Prayers for you.

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Welcome @YuliM to the group no one ever wants to be a part of but we’re so glad you found! I won’t presume to know your situation but as a survivor of 3 bleeds, a stroke, a craniotomy, an appendectomy, shunt install, shunt revision, and a number of other surgeries, feel you. The only thing I’ll suggest is to stay on top of it. You’re aware of an AVM so that puts you ahead of the ballgame! I would suggest getting professional treatment options and going by the doctors advice. I would also suggest for light reading my story, “Malformation: when bad things happen to the right kind of people” from Westbow Press written by yours truly. It’s a first person account from someone else who’s life was almost ended by AVM, but instead turned out to be beautifully used to spread this message of hope to others. Blessings as you continue, grace & peace as you go!

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Hi Yuli.

My AVM was discovered when I was 64 after I had a seizure. The Doctors decided to just monitor it since I had lived with it for 64 years. After two more seizures over the next 3 years, I had a stroke when my AVM bled. Given my age and the 3cm size of my frontal left lobe AVM. My neurosurgeon decided that radiation treatment was my best option. That was three years ago. There was absolutely no pain or problem with the the treatment. I’ve had no negative effects. My biggest challenge has been recovering from my stroke.

My AVM has shrunk but it’s not gone yet. We will wait another year to make a decision on the next treatment. It might be embolization or another round of radiation. Whatever you decide, I would not wait. I wish I had treated it three years earlier.

Best of luck to you.

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Thanks for all your support and for sharing your own experience with me. It sounds terrible to say, but through it all it’s been very comforting to know that someone else understands what I’m going through. I will definitely continue with my treatment, I live in fear of a stroke every day and possible permanent disability, I do not want to live my life with this fear. Thank you all again xx

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@YuliM

I understand this completely and I expect everyone else does, too. It is important that you make your decision based on the things your doctor is telling you and the risks and how you feel about them. It is not for us to persuade you one way or another: that’s not what this forum is for. Some of us haven’t had to make the decision – it may have fallen to our loved ones to choose – but for everyone else, we’ve been in very much the same place of needing to have that conversation with ourselves. It’s not at all easy but we’ve been there.

Do let us know when you’re up and we can think about you through the day, send you well wishes, etc.

Very best wishes,

Richard

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@YuliM
Hi

I don’t know your situation but I reckon ignoring treatment is very dangerous.
I had a bleed, from an unknown Avm, and survived but had surgery to remove Avm. If you are recommended for gamma then I think this is the best route. Ignoring the advice could lead to a bleed with life changing results.

Best wishes
Tim in UK

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Welcome @YuliM to the family & sorry to hear about your diagnosis… I noticed you are in NSW & I’m also in Sydney so please feel free to reach out if I can help in any way.

I was treated for my AVM via surgery at St George by Dr Erica Jacobson & Prof. Mark Davies… both fantastic at their job just in case you need a second opinion.

Please keep us posted on your journey… God bless!

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