Hello, AVM bleed at 23, living in London - soon to be undergoing gamma knife

Welcome & Help New Member Introductions
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Hello all,

I’ve lurked on this forum for a while but wanted to say hi.

I had an AVM bleed a little over a year ago. Like so many of your stories, it came out of nowhere and as a fit and healthy 23 year old it was pretty shocking for everyone. I was doing exercise and it just went, fortunately got hold of my dad on the phone and didn’t lose consciousness. I had a tingly left side for a while and have double vision which should be with me forever - but I know I’ve gotten off lightly compared to so many people.

I’ve gotten on with life and moved to my dream job but I’ve struggled with a variety of things. Depression for quite a while, the double vision changing the way I get around and get on with life and also not knowing what the doctors have wanted to do for treatment. It’s hard not to feel like a ticking time bomb whenever you have a scare or start to feel ill (or depressed).

My AVM is in the thalamus on the brain stem, so operating has been ruled out a few times. Embolization is also a no go and after one final micro-angiogram, the NHS has agreed to go down the gamma knife route. I know quite a bit about it now (a lot from this forum!) but now it’s finally going ahead, it feels surreal that there are no real side effects or likely complications. Am I wrong there?

I also was wondering, the day before my bleed I had about 4 very painful, quick thunder clap headaches - lasting about 1 second each time, over the course of 24 hours or so. I ignored them, as they were so quick. But now i’m sure they were linked even though the doctors say it’s not something they see normally. Did anyone else get warning headaches like these?

But then in January, when I was overtired, I woke up with the same pains beginning to happen. I had a day of feeling like it was going to bleed again with the same short, intensely painful head pains out of nowhere. It was pretty bad, but accident and emergency at hospital said there was no new bleed and there was nothing they could do. I saw the neurologist quite soon after and he said there was likely no link at all. Has anybody got any experience of this sort of headache post AVM? I describe the pain as extremely short (1 second long) and the most painful head pain you could experience.

Anyway, I’ve rambled on. I manage to forget about the problem for so long and then an appointment or procedure comes up and it becomes a major issue in my life again. I find that depression and positivity comes in waves, and it’s always helpful to have someone to vent at or talk things through with. So thought I would post to say hi.

If anybody in London ever wants to chat about things, always happy to listen and talk.

Best of luck to everyone :slight_smile:

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Welcome! Great you’re here and really interesting post, never heard of a head ache called thunder clap. A common description is ice pick, and I’ve had a few I would describe as ice pick, no sound, just the quick short term pain for me. I had a bleed in May of 2016, and found out what an AVM was and that I had one. I had Gamma Knife November 10th, 2016 so am in the process and roughly 6 months out from the next scan. I’ve had no side effects from the gamma knife to date. Thanks and Take Care, John

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I have never had a bleed, but I have had ice pick headaches. That hurt terrible, but like you said they are gone in a second. No warning when they happen. If they were to go on and on, I would pass out from the pain. I have always had them. I used to ask people did they have the feeling like they were being stabbed in the head with an ice pick. Because that is exactly how it felt to me. I didn’t know that’s what they were actually called.

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Raj,

It’s great to have you out of hiding and sharing stuff with us. I’ve not had a bleed or gamma knife but I have read, among these pages, of some side effects from gamma. I’m sure it is a good thing to do but it isn’t without risk.

I’ve also read of thunderclap headaches. I found this reference, so you’re right to link it with your AVM:

https://www.mayoclinic.org/diseases-conditions/thunderclap-headaches/symptoms-causes/syc-20378361

We’ve had an AVM get together in London in the past and if you fancy meeting up, I’m sure we could round up a few people for a lunch out.

Very best wishes,

Richard

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Hi @raj13,

I am also from London and 23 yo :raised_hand_with_fingers_splayed:

We have another London meet up event coming up: July 7th London Meet Up

As for me, I haven’t had a bleed but as a result of my AVM I had brain damage over the years leading to my diagnosis. Then I had a stroke during the embolisation procedure in January 18, I am visually impaired as a result. Following diagnosis in May 17, my degree completion has been delayed and moved back home with family. I have struggled with depression alot on and off too but going for CBT sessions and then counselling now has helped alot. The waiting list on the NHS is long but well worth it!

PMing you my contact deets :smiley:

Corrine

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Thank you all for so many lovely, helpful and really interesting replies.

A jumble of my thoughts:

  • Ice pick headaches. This is so interesting, and thank you so much for highlighting it. I think it must be similar. When mine are about I can be walking through my flat and it is like a thunderbolt to the head that knocks me off my track. And then it disappears again until the next crash a few minutes / hours later. Amazing to hear that you’ve had them forever Melissa!

  • Side effects of Gamma Knife. I’m going to go ahead with it, so I’m not going to worry too much. It’s the only real option as it’s in the thalamus and embolization won’t work. It’s not fun and it’s the not knowing if it works that upsets me the most. Also, I’ve read some studies that gamma knife to the thalamus can lead to the worst necrosis and edema - but again, not much I can do so no point worrying.

  • London meet up. It would be great to do lunch, and I’ll put the 7th in my calendar.

  • Depression. First it was anxiety that hit me, but then once I got back into the swing of life after a few months of recovery it was amazing how this changed to depression. I struggled. I completed the CBT courses on the NHS (which did help in some ways I found, but was limited), was offered medication but wasn’t convinced it was right. It came in waves and even moving to my dream job didn’t put it away. I think I’m managing it better now but it is still there if it is triggered by some event.

A couple of weeks until the treatment and I’m more excited to move on than anxious!

Thanks again everyone,

Rob

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Raj welcome to our group of AVM-ers. So glad you found us. I never had thunder clap or ice pick pain, but I have had the Gamma Knife procedure. I had no serious side effects except for a mild to moderate headache for about 3 days, for which I took Tylenol. During those 3 days, I also slept a lot. I wish you a speedy recovery from the Gamma Knife procedure. Keep us posted on your progress.

Sharon D…

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Rob,

I think you’re managing it pretty well the thoughts you’ve laid out above are very sensible and commendable.

Hang in there. As you say, there aren’t too many options, so we just have to take what seems best.

Anything that bothers you, we are all here.

Best,

Richard

1 Like
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Hi! My avm is also in Thalamus, and thank God i didnt read anywhere what are the probability of edema and necrosis, because at this point i just dont want to know and read more :sweat_smile:
I understand what you feel concerning gammaknife, i waited 9months after bleeding for it and when i woke up the day after it was the happiest day of my life, i just dont know how to explain, i felt so so happy knowing it was behind me and i was doing something to heal.
I feel exactly like you, first i had an extreme anxiety and now i think its depression syntoms… I think a lot about past instead of the future, the meaning of everything, i do things and react on ways totally unexpected and specially i dont know myself or what to make to be in a happy path again :confused:
I wish i could go to avm london meeting!!