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AVM Survivors Network

Mum of AVM survivor

Hi all, thank you for accepting me to the group. Our story…last August, my 8 year old daughter suffered a sudden onset headache and vomiting while on holidays. Following a ct the following morning she was diagnosed with a cerebral haemorrhage as a result of avm rupture. She was transferred to a children’s hospital here and then to a neurosurgical Centre. She had a very successful (10 hour) surgery. Thankfully she didn’t have any lasting side effects and recovered very quickly.

I have been doing a little reading. There is very little research, especially in paediatric ava’s. However I have found some literature which suggests a 15% recurrence in paediatric avm. She is due an mri/mra in November and a I assume yearly checks after this. Has anyone else come across this in the literature or had real life experience of recurrence. We are also awaiting a genetics follow up regarding possible hht.

Thanks, Sinead

Good morning, Sinéad!

It’s great that you found us and lovely to have you! It’s also wonderful that your daughter has had an excellent outcome from her surgery!

If the literature you’ve found is online, please include a link to it, so I or others might have a read. I’ve not seen such things as you suggest, though others may.

Since you’re cross checking for HHT, is that because you or your husband have some signs of vascular malformations or that your daughter has some additional signs? I worried a little about HHT myself but I don’t think my doctor’s believe it to be relevant to the type of AVM I had.

Very best wishes,

Richard

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Hi Richard,

Thanks for the welcome! I cannot find the literature I mentioned which gave 15% recurrence rate but I will keep looking. Some other articles I read are linked below.

Anna has had recurring nosebleeds as did her Dad and Uncles. Her paternal grandmother also died of a cerebral haemorrhage at the age of 36, of course we don’t know the cause of that now. I doubt she has hht but because there are some signs in her history we would like to rule it out. Unfortunately the wait to see genetics here in Ireland is often several years!

Sinéad

https://www.ahajournals.org/doi/pdf/10.1161/strokeaha.113.004292

https://www.lenus.ie/handle/10147/314393

Hello Sinead!!!
My avm was found after my first stroke in 1984, I was 8 years old at that time. I received proton beam radiation because my avm could not be operated by conventional surgery due to its location in my brain. The treatment I received was in experimental phase at that time. I have survived four strokes: 1984, 1986 and the last two on November 2002. I am 45 years old in this moment. Every avm is different and every person is different. I will pray for your daughter. Please have faith. If I could do anything for you please contact me. With all my love Angie

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Ok, so that sounds definitely like it is worth checking out. My grandfather was the same as you describe but my doc poo pooed any familial link. However my AVM was a DAVF and the thinking is that those are acquired rather than congenital or hereditary, I believe. Definitely worth checking the HHT line. Good luck!

Hi Angie,

Thank you so much for your reply. It is very interesting to hear your story even though it is so different from Anna’s. I think I am dwelling more on what happened as we approach the anniversary of it happening. Myself and my husband are still dealing with the trauma of it to be honest. We realise how lucky we were that it was operable and that she survived with no deficits. I would love to be able to draw a line under it but still worry about recurrence.

Wishing you well, Sinéad

I hadn’t even heard of DAVM until I found this page. That is interesting that they seem less likely to be inherited.

Hello there my son too is an avm survivor and his Craniotomy was on june 2019 … So it has been a year and im too worried sick about the recurrence and thank god my son has no side effects at all except a headache that not on the surgery place that usually happens every two weeks or more … And it started after 6 months of the surgery and thats what started the worrying in me and we were supposed to do the angiogram on last june but it got postponed cuz of the coronavirus situation … So do your daughter too has any headache or not ?

Yeah i forgot to mention my son is 7 years old now.

Hi Omairi,

No, my daughter hasn’t had any regular headaches since her surgery. Have you been in touch with your neuro team to discuss the headaches?

Anna had a headache and vomiting shortly after discharge from hospital last September. I brought her to a and e on the advice of the nurses on the ward she had been on. She saw someone from her neuro team and they did a ct which was clear and put my mind at ease at the time.

During her surgery they thought they had got the avm fully and did an angio during the surgery which showed a little left. They removed that and did another angio at the end of surgery before waking her. I am wondering if recurrence happens when they don’t actually remove every part of the original avm.

I hope your son gets his angio soon and that puts your mind at ease.

Sinéad

I dont mean regular headaches … Does she have headache at all or not? Sorry for asking alot though.

My son only had ct angeio after 4 days of the surgery and mri/mra angeio after 6 months of the surgery and all was clear thank god.

She only had a headache in the week after her craniotomy, thankfully nothing since.

Great… My son had it every once in a while and not even on the surgery place… Sometimes on the top and sometimes on one of the temples …but the doctor says its a tension headache.

HI!

I’d write in greater length, but time and a major headache are telling me to make it short.

My AVM was first diagnosed in 1978 at the age of 13. 11 hour surgery at Mayo and they basically clipped the sucker out. Was told it might come back.

1984 it was showing above my left collar bone again (the normal site where mine shows up.) A trip to Mayo and the results were that the risks of doing something outweigh the risks of doing nothing.

1986-87 - 21 years old. No question it needed to be dealt with. 8 embolizations and 1 surgery in the next 7 months. Oh and my firstborn came along about 60 days after the last surgery.

1987-2009 - watch and wait, advancements in how they treat these things were accelerating more than my AVM was.

2009 - AVM pinched a nerve in left shoulder. Mayo Clinic fixed it.

2018 - Major embolization/surgery/allfelltopieces and here I am.

I have no academic research, just my own diagnosis as teenager.

Hope this helps, any questions, I’m an open book with lots of smudged pages.

TJ

Good to hear the surgery went well. It’s in a way a good thing to have the surgery at a young age. It makes it where you can adjust to the new person you are and also lets others see your struggles. I had my AVM when I was 10.

Hi John,

Thanks for the reply. My daughter thankfully has no lasting effects so I am hopeful that will remain the case. I would love if her avm was not a big deal to her in the future. Did you have regular scans after yours to check for recurrence? That is my biggest fear at the moment.

Sinéad

My story is a long one but I had a check up twice a year after surgery. Mostly just a neurologist appointment but some times a couple other test with my memory loss and physical health. After my surgeries were over they did one more MRI just to see how things looked because I was growing at the time. I only see my neurologist once a year now and that’s just to test my blood and keep me on my seizure medication.

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Anna, you and your husband will be fine. I will include Anna in my prayers. I am here if you need anything. With all my love Angie

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Mine was found when I was 14, but apparently I had it from birth. As soon as I came to post my AVM “Procedure” I remembered that the conversation my mom had with the MD when it was found - I have not recalled this memory since. He said there was nothing that could be done & it was something to just keep an eye on & nothing could be done - I never realized that moment changed my life

Hi Sinead,

I’m so happy to hear your daughter is doing alright. I had an AVM hemorrhage when I was 16. Similarly to your daughter, I presented with a sudden intense headache and vomiting. I had my AVM surgically removed and it was a success, but unfortunately, a year later an angiogram showed I had regrowth. I’ve been having yearly MRIs ane meetings with my neurosurgeon to monitor and discuss possible treatments (when appropriate).
I’ve been told that AVM recurrences are relatively rare, but can sometimes happen in children/young adults. I hope all goes well with your daughter’s next MRI.

All the best,
Ella

Hi Ella,

Thank you so much for your reply. I am sorry to hear that you had recurrence of your avm. What options have you been given for treatment? I assume you have had no symptoms due to the recurrence?

Sinéad