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AVM Survivors Network

My Story

My AVM was diagnosed twenty years ago after a road cycling accident.
I was diagnosed with left sided sub dural heamatoma after an MRI scan. A coincidental discovery on the scan was a medium sized AVM on the right parietal lobe. At that time my AVM was asymptomatic and benign. After a consultation with a neurologist at the then Radcliffe Infirmary, Oxford, I was given two options. Gamma Knife or no treatment. As I then had a young family and the AVM was not bothering me at all in any way I decided not to have any treatment. Fast forward twenty years to last September when after accidentally striking my head quite hard on a door frame. I had a series of focal seizures.
After a spell in Northampton General and Oxford University Neurology wards it was decided that my AVM which, now had a small flow related aneurysm associated with it, had started to misbehave. After discussion with the consultant vascular neurosurgeon it was decided that the only viable treatment because of the location of the AVM which, is on the right side motor strip, other than doing nothing was to have Gamma Knife treatment at Sheffield.
I went to Sheffield on the 5th February 2020 to meet the consultant and the team there. I should have my treatment in the next two weeks.
Would be interested to hear from anyone who has had the Gamma Knife treatment, warts and all

@micko
“Would be interested to hear from anyone who has had the Gamma Knife treatment, warts and all”

It seems your decision on no treatment 20 years ago is a good one. My AVM bleeding happened 2 and a half years ago, Gamma Knife or no treatment was my option, I chose Gamma Knife. I knew nothing about Gamma Knife and didn’t do much research. I didn’t treat myself as a patient but did whatever I do as usual after the treatment. 2 and half months after Gamma Knife, I had the second bleeding which took me a longer time to recover than the first one. I experienced anxiety, sleeplessness, no heat tolerance, and being unable to walk without a walker or walking poles especially in the hot weather in the first half-year. Then I read through some medical reports about AVM and Gamma Knife. If I faced the same situation 2 and a half years before, I would choose no treatment. Right now I still need to wait for at least another year to know if my AVM will be obliterated.
What did your specialist tell about the long-term side effects of the Gamma Knife treatment?

micko, welcome to the site! I had Gamma Knife in November 2016 following a bleed to a previously undiscovered left temporal AVM. It was small but deep so Gamma was the best option. I found out in February 2019 that it was successful and one of my now favorite words, obliterated, was used. I have no lingering effects attributed to the procedure.

The procedure itself was a positive experience for me. Some pain when the frame is attached but other than tenderness afterwards, the next few months was fine. I did have some mild head aches and ice pick head aches at about 5 to 6 months. These all became less frequent and disappeared.

The waiting can be a little difficult at times but all in all mine went very well. TAke Care, John.

This is was going to be a very difficult decision for me to make as I guess it is for everyone. The consultant was very good and did not hold back on the brutal truth. Describing the possibility of symptoms similar to yours and worse!
But at the end of the day it is a rock and a hard place decision. No one really knows what the correct decision could or should be.
I have to say that if it wasn’t for the appearance of the flow related aneurysm which according to my consultant is more of a threat than the AVM I would probably leave the AVM alone.
I hope you continue improve and soon hear that magic word “obliterated”

“The procedure itself was a positive experience for me.”

Thank You.
I know everybody is different but I am reassured by your posting and hope for a similar outcome.

Hi,

I’ve had SRS at the Royal Hallamshire twice - in 1996 & 2001, plus a craniotomy done by Mr Radatz in 2010. I would recommend the Gamma Knife and Neuorsurgeons at the hospital very highly.

Good luck!

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Hi Mico:

Welcome to the group! I had Gamma Knife twice for the AVM in my Cerebellum. Due to location, Gamma Knife Radiation was the only option open to me. The first was in April 2015 and the 2nd in Jan. 2019. Had no serious side effects except for a numb scalp for days and pain where the Halo/Frame was screwed into my forehead & neck area; and a mild, nagging constant headache for about 2 weeks. I wish you all the best.

Sharon D…

I have a right frontal parietal lobe AVM near motor strip as well. Coming on 2 years post gamma knife. I have seven crazy aneurysms, one large beneath my left eye, 9 mmm… All others are under 4 mm. in circle of Willis. I suffered acute vertigo immediately after and still have difficulty with balance. I have a right labyrinth hypofunction. PT helped a lot. I’ve got ice pick headaches and eye pain that come and go. Left hand focal seizures are controlled by meds. My left side went numb after 2nd dose of radiation. I have a lesion near AVM and I’m waiting to see how it looks again in April. Anxiety is probably the hardest thing to deal along with some come and go sadness over this entire ordeal with but I have help for that now too. I don’t regret the decision. Too dangerous to do nothing. I’m still holding out for a good outcome. Best wishes to you. Hoping for the best possible outcome for you!!

Thanks for your message. Hope you’re ready for the Gamma Knife treatment. Have decent and enough sleep will help. Good luck!

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Thank you for your reply. I know it’s different for everyone but I am reassured by your reply and it’s interesting to hear of your experience.

Micko

Many thanks for your reply. I agree entirely with you about the anxiety.I hope you recover fully over time.

Micko

Thank you for your reply. I am under Dr Radatz as well and so am hoping for a positive outcome.
Micko

Hi Micko,

I had my right occipital parietal AVM diagnosed ten months ago due to a bleed. My neurosurgeon still Kings felt a craniotomy was high risk and that gamma Knife was a better option. I had my treatment at Sheffield under Mr Radtz in July 2019. So I’m only 8 months in and can’t be sure what my outcome will be in terms of effectiveness or side effects. What I can say it that the team at Sheffield are amazingly knowledgable and have treated many, many AVMs. I did a LOT of research reading many studies and concluded that I would ideally have no intervention, but that given the risks of further bleeding, a large venous aneurysm on the outflow and my young age, doing nothing is too dangerous. Having chosen to have Gamma Knife, I felt that Sheffield was one of the best globally so was happy to have it done there. The day itself was easy enough and the team very reassuring. I felt I’ll for a few weeks after (maybe a month, starting a week after treatment) but recovered fully and feel fine now.
All the best for your treatment and feel free to contact me if you have any questions about the process or Sheffield specifically.
PS: I stayed at the Rutland Hotel the night before and had a good dinner at Butcher & Catch across the road! Recommended…
Best
Jonny

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My son was diagnosed with his AVM in February 2019, after being fit and healthy all his 51 years. He just collapsed in the garden while cutting down some trees, we now know that he’d had a massive bleed and a seizure. It came as a massive shock to discover that he most probably had been born with it. He has a large right parieto-occipital avm. Inoperable, he had his first gamma knife in July 2019 and his second dose in August 2019. He said the worse bit was the fitting of the halo. He didn’t seem to have any adverse effects of the gamma knife though. He has now just in the last fortnight gone back to work full time and he can drive again starting next week.
I wish you all the best and I hope this helps in some small way.

Thank you for your reply Jonny it was very helpful the more I hear from people who have been through the treatment the more reassured I am.
By the way we stayed at the Rutland when I went for my consultation. Thank you for the tip about the Butcher & Catch, we will give it a try when we go up for my treatment, hopefully within the next couple of weeks.

Thank very much for your reply. It comes as a bit of a shock when you realise you have had time bomb in your head ticking away since you were born, something I have thought about a lot.
I am pleased that your son is on the mend and hope he is able to move on with his life.
I was interested to hear he is going to be able to drive soon, I have had my licence taken away by the DVLA Don’t know when I will be able to get it back.

Many thanks for your very reassuring reply. I know everybody is different but I know I am in good hands.

Micko,

My reading of AVMs treated by radiotherapy is that it depends on a few factors: where it is, whether it has bled and how treated:

… bus & lorry driving licence (right hand column) much less generous.

Talk to your doc to determine which category yours fits into. My licence was never actually revoked – I was simply told not to drive – and restored about 2 months post embolisation. An interview with my GP, followed by a phone call to DVLA and I was surprised to find myself back on the road in a matter of an hour or two. However, it doesn’t always go so easily.

Talk to your doc about how to interpret the info above. They will need you to apply to DVLA to regain permission to drive at the right point.

DVLA then ask your GP to interview you. If that goes fine, ring DVLA and your insurance company and if you follow my luck, you might be back on the road as soon as you’ve seen the GP, walked home and made some calls.

Best wishes,

Richard

Many thanks for that. I will do as you say after Gamma Knife treatment.
I am bit confused to as why my licence was taken from me in the first place as I have only had focal seizure with no loss of consciousness or control and always at least ten minutes warning. Added to that I am on Keppra since I started having them and have had none since I have been on medication.

Micko

If you’ve had seizures, different rules will apply. You need to look up seizures on that list (or elsewhere under the gov.uk site for health conditions and driving) and see what it says. If I get a chance, I’ll have a look myself. That you get 10 mins warning is important.

For me, one of the issues was that my DAVF was making me dizzy. It wasn’t “debilitating” dizziness: it wouldn’t have made driving immediately dangerous, so I had to cross the test for dizziness as well as the DAVF tests. If you’re getting seizures, you’ll need to see what the guidance is there, too.

I do think the seizure tests are more obstructive: I’ve got in my mind that you have to be seizure free for a year before you’d get your permission to drive back, but that may be for people who don’t get 10 minutes warning of onset.

There’s lots of info on gov.uk and the people I spoke to at DVLA were really helpful.

Best wishes,

Richard