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

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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

Hi Orla. So sorry that your son and family are now part of our AVM family. At least we’re a good bunch :slight_smile:

Absolutely you can ask for a second opinion and you absolutely should. From the link Dick provided I noted a surgeon who specialises in Gamma Knife that is in your part of the world and is worth consideration. SSR impacts surrounding tissue. Gamma Knife does not as it has the precision of a scalpel.

The risk of another bleed is highest immediately after a bleed of having another and reducing on a sliding scale for a year after his bleed. You are halfway through that.

My son has had both radiation systems so I am happy to answer any further questions you may have in regards to that.

Might I add, in reference to his balance issues, rehabilitation should help with that. He may however also experience dizziness and nausea as part of the balance issue which may or may not be reduced with rehabilitation. If it is ongoing he may be experiencing vertigo. If it is a problem for him you may find that treating it like motion sickness is helpful. Ginger may be of assistance, wrist pressure bands or medications are all options. I add this one because this was an issue I had to figure out myself that was having a significant impact on Jack and he suffered for a long time before I was listened to and it was addressed. This may not be a problem in your son’s case but if it is being aware of this will help you out a bit.

Good luck and prayers being sent for your son, yourself and the rest of your family. These are not easy times for you but know that the AVM community is here to support you in any way we can.

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So sorry to hear about your son and hope things get better for him over time with the faith that technology is changing so much daily that maybe one day they can get this sorted for him… sending prayers to your son and your family and please do not hesitate to reach out to the family here for any comfort or general information/updates… God bless!

Hi everyone,

I wanted to update this thread as I know I found relevant posts useful to search last year when we were trying to learn more about Stereostatic radiation therapy (SSR) when it was recommended as a treatment for our son.

Our son care was transferred to Prof Mohsen Javidpour last November when he was admitted for investigation after developing weakness in his left leg. Following detailed planning scans including a digital substraction scan, it was revealed that my son had actually two grade 4 basal ganglia AVM’s on the left and right side of his brain. Prof Javidpour recommended SSR targeted at the front side of the right sided AVM at the precise sight of the original rupture.

Following further scans and mask fitting (frameless so not screwed into his skull)in January 2022, my son had his SSR treatment last month (single high dose). He came through it amazingly well with only one day of vomiting and a couple of days fatigue. As per protocol he will be scanned at 1 year and then at 2 years to see if the SSR has had a positive effect on the right AVM.

I have to say in spite of all our worries and concerns the multidisciplinary team that worked with him at St Luke’s Oncology Centre, Beaumont Hospital, Dublin Ireland we’re amazing. It’s still along way to go but we are relieved to have it over with.

I hope this information helps anyone contemplating this treatment.

All the best

Orla

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I hope he progresses and recovers.
Prayers within you Olga

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