How did you come to terms with your diagnosis?

Types of Avm's Cerebellum & Brainstem
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Hi everyone.

those of you who have an inoperable AVM because high risk of complications (disability or even death) - how did you learn to live with it? Mine avm is large, but we didn’t dare to have a trepanation and the only treatments I’ve had are radiation therapy and embolization.

How did you come to terms with your diagnosis? Do you still get anxiety? How do you cope?

I’m in therapy, but I still have setbacks — like right now. I have an MRI coming up, and I’m terrified that there won’t be any improvement, and that I’ll have to go through this hell again.

It’s really hard to accept the “new me.” There isn’t a day when I don’t think about my condition. It makes me angry that my life now has so many limitations, and that I can’t see a future or a sense of purpose anymore.

How do you find meaning? What helps you?

I do find small good things in my days, and I’m grateful for them — but that doesn’t erase the rest of what I feel. I’m just genuinely interested in your stories. Maybe I can learn something from your experience.

And I’ll share what helps me. My dog ​​makes me so happy every day. I hope I can be with him until he’s old, be him support.

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@Nana

I want to ask a little about the treatment of your AVM, because there are many, many people here for whom having open surgery was not a preferred option or even an option but who have had either embolization or gamma knife or both. That doesn’t really translate into “inoperable” because you have had some operations, they just weren’t open surgery type operations. Does that make sense?

There are a bunch of people here, a smaller group of people, who’ve literally been told “watch and wait” – take no action at this point – because to do so would be damaging: that’s an even more challenging situation to be in than yours, perhaps. Those guys are the “inoperable” ones.

So if I can ask about your treatments so far, what degree of obliteration are your doctors hoping to get for you? Have they told you that they’re hoping for a complete obliteration or have they indicated that it is more likely to be a partial obliteration? I understand that if the prospects are only to reduce the size of the AVM, it remains much more of a worry.

With the gamma knife, it does take a long time, so it is good to get your mindset into a way of coping and I hope some of the gamma knife patients will share their thought process. I think it might be helpful to think of it along the lines of every day into the future is a small step towards being safer: that you’re getting better over time. It is unhelpful to focus too much on the remaining risk but instead to take a positive view of it. I think.

I had to go through several months of getting less well with my AVM before I was able to have an embolization. I worried my way through all of those months and I worried my way through the recovery months afterwards, as well. So I think worrying about these things is pretty normal.

The main comfort I took while I was waiting for surgery was to wear a medical wristband. I reasoned with myself that having a wristband that told anyone who found me that i had a medical condition and that if they find me apparently having a stroke, simply to call for an ambulance, would lead to better outcomes for me than if they didn’t know what to do. There was a better chance of being looked after through having that piece of information with me 24 hours a day, or at least while I was out in public on my own. So maybe think whether having a medical wristband would help you to feel more settled. My wristband said something like my name, my hospital number and “Richard has a dural arteriovenous fistula, right occiput. Care of QMC Nottingham (= the hospital name). In case of stroke dial 999,” and my wife’s mobile phone number.

You’re not alone.

Richard

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Hello Richard!

I’m so sorry — I truly didn’t know about cases like this. In my understanding, embolization and radiation therapy were just procedures, but it turns out they’re also considered forms of surgery.

actually I don’t know what degree of obliteration my doctors are expecting, but since my AVM is large, I assume I can only hope for a partial obliteration. I’ve also heard that it’s often necessary to undergo radiation therapy again 3–4 years after the first treatment.

Thank you so much for your support and for sharing your experience.:folded_hands:t3:

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I just want you to be more positive about your situation! “Procedure” and “operation” are synonyms, so you’re not “inoperable”, which directly translates as “cannot be operated upon”, because you’ve had at least a couple of procedures towards treating your AVM.

It’s going to take time but you’ll get better than you are today :heart:

The other thing I reminded myself of as I was having my procedure was that the aim is not for zero risk of a stroke but to reduce my stroke risk back to that of an average fifty-something. Zero doesn’t happen. All we need is to be back towards what everyone else takes for granted.

Very best wishes,

Richard

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Hi Nana. Just thought I’d chip in and say ‘welcome’. I’m in the exact position that Richard describes. At 14 I was diagnosed with hydrocephalus and shunted. 11 years later I found out about the direct cause, a cerebellar AVM. Mine is large too (5cm+). In my younger days I was once offered Gamma Knife - with at least 3 embolisations first, all carrying A LOT of risk. I turned it down and said I’d reconsider when I was older. But guess what? I don’t feel that time has come yet. Until my late 40s I had regular MRI appointments to monitor everything. The advice of the docs was always the same - ‘don’t touch it’. I’m really lucky cos I don’t suffer that much with side effects and I’m thankful for that every day. But like you, this is always with me. I can’t forget it or pretend I’m not really scared of what might eventually happen. But I tend to be quite a positive person - about this anyway. And I surround myself with things that take my mind off it. I have a great family life, a lovely home and a good job. I exercise regularly, have outside interests and keep my brain active. And I’m still here, which is a bonus. I do get very anxious about things sometimes and also annoyed with myself when I lose my balance, when I’m clumsy etc. But then I remember we all have our crosses to bear. Best of luck to you. Lulu x

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Hi Nana. Like @DickD said, you have received procedures as I have heard some in this forum that they have received no treatments whatsoever, especially those in countries that do not have the equipment needed for Embolizations or Gamma Knife type treatments nor Craniotomies. You have like my son. The Craniotomy he almost received in January 2024 failed as the neurosurgeon decided on the spot that it was too risky for paralysis on his right side. Therefore, he only received Embo and Gamma Knife in March 2024. He does not duel on it and has moved on to do his life and tries his best to comfort us instead of us to him. He is in college, had a job and is starting his own marketing/ website business. He takes Keppra to prevent seizures. He is slowly getting his life the way he had it before the AVM was discovered. He is a man of faith and is at peace through God. Fear is not God’s is what he believes strongly. We do understand what you are fearing but you have received procedures that should allow you to be less fearful than someone that has received nothing at all. Greetings from Texas!

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Hello Nana

My AVM ruptured 2019, when I was 19. An international student who studied in Canada from China. I had to say I would have a bright future if I didn’t have this nidus. The doctors there preferred to treat me with gamma knife, since my nidus was large and sort of deep. Honestly, I was extremely anxious about this treatment because I was told that there would still have chance to rupture during the waiting period for the radiation therapy, I probably would get killed by another rupture.

And I decided to come back to China for further treatment. I was eager for the craniotomy, because I believe this is the only treatment to let my nidus was vanished, once and for all. You know during that horrible period, not only my personal time boom in my head but also the deadly and severe virus, COVID-19. Therefore I waited for about half a year to come back to China and accepted craniotomy.

During the time I stayed in Canada, from the diagnosis until the flight. I moved out my apartment that rented with a friend, and re-rent a little house with my mother ( Once she heard the hemorrhage of my brain, and came to Canada and take care of me immediately. There’s no greater love than a mother’s love. )

I started to travel many cities in Canada with my mother. She never left China when she was born, this was a great chance for her. Also many new things and views can also integrate into my heart, to distract the attention from my AVM.

After the open surgery, I suffered numerous and severe complications. Until now I am not able to act like many “normal “ person. I still have to rely on the wheelchair. If I had chance to do it all over again, I would do things exactly the same.

All I wanna say is stay positive for every decision, be happy, grateful and enthusiastic about the moments in your daily routines. Keeping yourself busy, in order to forget the annoying AVM, more important, is to find the meaning of your life. To love and be loved, to touch and be touched. All the best wishes for you. Feel free to text me. I hope these words can help a bit.

Best Jimmy

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Thank you! I never thought about it that way!

Wishing you peace and happiness!

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Hello Lulu :face_holding_back_tears:

I’m so happy for you! I imagine it wasn’t easy to make such a difficult decision at such a young age. In general, at any age, this is a difficult decision that affects your whole life. But everything came together in an amazing way! Thank you for sharing your story with me. Even though I’m surrounded by love and care, only someone who has been through a similar experience can truly understand. Here, I don’t feel so alone, and I’m inspired by stories like yours :growing_heart:

Sending you love and warm wishes

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Hello hello!

Thank you for sharing! You’re absolutely right, I’m grateful to the doctors who fought for my life and for giving me this chance. And I’m glad your son is moving forward, despite everything! This attitude will definitely have a positive impact on his health!

I wish your family health, happiness, and peace!

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Hi! You’re amazing. It takes so much inner strength to agree to go through that again. :open_mouth: I know these conclusions aren’t easy to come to. But if so, the light that fills you is stronger than any fear. You have an amazing mom! It’s wonderful that, despite all the difficulties, you found something good in this situation. And I would even say something priceless! Wishing you and your mom health, happiness and peace. Thank you for sharing and for supporting!

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Hello! @DickD @dageris @Jimmy1103 @Lulu1

Everyone here thank you :beating_heart: your stories helped me let go of control and trust life.

I had an MRI, and the doctor said the results were good. He didn’t answer my questions about whether additional surgeries would be needed or what percentage of obliteration had been achieved. But when I asked when I might be able to stop taking the medication, he suggested reducing it to just one pill for seizure.

I realized that anxiety will always be somewhere around. At first, I was angry about having to take medication for such a long time. Then I began to worry that without it, the risk of a seizure would be higher.

What truly matters is learning how to relax. Life is beautiful because it is unpredictable.

Life was just as unpredictable before the illness—only now I see that it was an illusion to think everything was ever “under my control.”

I prepared myself for a bad outcome in advance, so I wouldn’t be too disappointed. But the result was different. And I felt such mixed emotions: gratitude intertwined with happiness. A quiet happiness, as if it could be frightened away.

It’s hard to simply relax, but ignoring anxiety is neither possible nor necessary. I’m only learning how to live with it. But because of you, I no longer feel alone.

I wish you strong health, health for your loved ones, inner peace, and happiness. :heart:

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Oh, absolutely!

Keep talking to us about how you’re going on. Don’t just go away, but use this space as a place filled with people who are doing much the same as you and going through similar troubles. My own view is that there is at least as much to be gained by giving to others here as by receiving.

Very best wishes,

Richard

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yes, I totally agree with that.when the first time I heard the diagnosis “arteriovenous malformation “ I was like what the heck. I was completely shocked, because I have never heard the words, but the nidus had coiled in my brain since I was born. I remembered I could not stop to think about it once the diagnosis was informed. I experienced a hairloss after the embolization and after the craniotomy, when the air hits my brain, nothing was not the same. I’m really glad that can help you. I wish you all the best.
Jimmy

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Thank you Jimmy!

Yes, we will never be the same again. Sometimes I think that when my hair fully grows back, I’ll be able to return to the old, carefree version of myself. As much as I wish it were so, it won’t happen. But this illness has strengthened me—I have never felt this strong before. It feels like after going through all of this, is there really anything I couldn’t handle? Yes, it will be difficult, but inside I’ve found a kind of inner strength.

And I think that people who have been through something like this are able to find joy in the small things more deeply. Because before, so much was taken for granted. Now, you truly realize the value of everything.

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Yes, you’re right. I was very worried these days because of mri, but now I’m coming back :blush:

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I completely understand you.

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It’s ok to be sad, or down, or confused. I’ve been telling myself lately–it’s ok if I don’t remember things.

I don’t know you, but It’s ok today–however you feel. For me, admitting that I could not control things was the first step.

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Thank you, you’re absolutely right. I think it’s first and most important step.

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