Advice on my son’s recommended Stereo Static Radiation treatment for Grade 5 3.5cm deep brain ruptured AVM

Hi there, my name is Orla and living in Dublin Ireland. I’m like to hear some AVM survivors who have had SSR treatment for deep brain AVM’s. My 29 year old son was diagnosed with a grade 5 AVM after it ruptured on 21st February 2021. He survived in spite of many complications and 6 weeks in ICU and high dependency unit in Beaumount Hospital in Dublin. He has been an inpatient in our national rehabilitation hospital for 13 weeks and hopefully will come home in the next few weeks when supports are in place. He has made a really good physical recovery with some minor balance issues. Primary issues are short term memory loss, difficulty with planning tasks, problem solving and judging situations safely. He has his first SSR planning meeting with his Neurologist on 7th September. Dr Javadpour, a Neurovascular surgeon at Beaumont has been recommended to us and we are hoping he will be involved. We know Sheffield Centre in the UK is a centre of excellence for AVM treatment and wonder is it possible to get referred for a second opinion. Does anyone have experience of AVM SSR treatment at Beaumount hospital in Dublin Ireland? Open and all opinions? Orla

Orla,

Welcome! I’m sorry you’re going through this but I hope we might find some people in Ireland who are able to share their experience with you.

I’ve got just one question: what do you mean by “SSR”? Do you mean stereotactic radiosurgery?

I am aware of a number of people in Ireland coming to Sheffield for treatment, though I don’t remember if those were from Eire or Northern Ireland. I would hope it is an avenue you can look into.

Best wishes,

Richard

Hi Richard,

Thanks for your prompt reply. Yes, by SSR I meant Stereostatic Radiation treatment.

Many thanks
Orla

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I can also see that Dr Javadpour at Beaumont is often referred to here.

https://www.avmsurvivors.org/search?context=topic&context_id=25943&q=Beaumont%20after:2016-08-01&skip_context=true

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Hi Orla,

So sorry to hear your son is going through this. It must be such a nightmare for you all. I have no experience with ssr. However, Mr Javadpour was my daughter’s surgeon post avm rupture in 2019. I couldn’t recommend him highly enough, we trusted him completely and thankfully he was able to surgically remove my daughter’s avm. I hope you find a treatment solution with a team you are happy with.

Sinéad

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Hi Orla,
I had my avm treated in Sheffield in 2016 with SSR. I was referred by my Neuro surgeon from Royal hospital Belfast. In 2018 I had my follow up angiogram and my avm was obliterated. I highly recommend Sheffield and please contact me if you have any questions.
Regards,
Jane

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Hi Orla

I don’t think I have much useful advice for you, but didn’t want to read and not reply!
Sorry to hear about your son’s rupture, so stressful and horrible for you all I’m sure. I can’t pretend to know what it’s like, as my own AVM rupture was luckily much smaller and I only have minor damage from it.
I’m at Beaumont as well for my AVM, although I’m under Mr Rawluk rather than Mr Javadpour. I’ve had a different experience to your son though in that when mine ruptured I was actually living in the UK, in Sheffield as it happens (very lucky!). So I had the stereotactic radiosurgery there. I then moved home a couple of years later and have had follow-up via Beaumont - an MRI in 2019 which showed some shrinkage, and another MRI last week. I’ve an appointment later this month to see where things stand now.

So I’ve actually had very little to do with Beaumont so far, because I wasn’t diagnosed or treated there, just had that single follow-up appointment and no other contact. They do cyberknife (SRS) treatment in Beaumont but I don’t think they do very much of it, and if I’m honest, if I need more treatment my gut feeling would be to try to get myself referred back to Sheffield again somehow if it was possible, because I had a good experience there and they treat so many AVMs, I just assume there is more expertise (but maybe that is unfair of me). I’ve also no idea if it is possible to get sent there though, as they can treat in Beaumont so I probably wouldn’t qualify under the National Treatment Purchase Fund (and I don’t know if that even still exists, or how Brexit might have affected the options).

If I do have to get more treatment and am chasing the Sheffield option, I will let you know if I get anywhere with it.

Some of the consultants in the Hallamshire Hospital in Sheffield also work in a private hospital there, called Thornbury. It might be possible to get a second opinion from them?

Also, I have no idea what the NRH or Beaumont support is like once your son has been discharged, but I’ve had some good help from the charity Headway and there is also Acquired Brain Injury Ireland, so it might be worth getting in touch with them if you’re not already.

Best wishes, I hope the treatment planning meeting is productive.

Thanks so much all your feedback and advice. Our son had his first follow up apt with his neurologist yesterday. His opinion is that it is unlikely any neuro vascular surgeon would offer SSR treatment given his AVM is larger than any they have seen and is likely inoperable. We had thought it was grade 5 but turns out beyond the limits of this grading systems as it is closer to 10cm in size and across the midline of his brain and very deep near both basal ganglia and caudate nuclei. Basically he said the risks would far out weigh the possible benefits. Difficult news as our son’s AVM ruptured once and he has now significant cognitive deficits. His rehab team have said he cannot live alone now, cannot return to work, cannot drive and needs 24/7 supervision. Very difficult for him as a 29 year old who had his own apt, had a fantastic and was in the early stages of a relationship. We had confirmation yesterday that he has had state funding approved for a personal assistant which means he can at last come in next couple if weeks. He has been in hospital over 28 weeks since he had his haemorrhage on 21st Feb. We must live in hope he does have another rupture but are wondering should we get a second opinion on treatments that could help :crossed_fingers::crossed_fingers:

@Orla

I can’t really comprehend how you feel. I’m glad you’ve got care sorted for him because that can be a very unhelpful battle that nobody needs.

There is nothing that I’ve read about here that I could say “You should try this…” because his AVM sounds really quite enormous: you rather indicate that it is off the scale and that’s just rare among the very rare. There’s one person who I know who has dug into these things more than most of us. I’ll see if they have any thoughts to share.

Thank you for sharing how you both are.

Lots of love,

Richard