Staged gamma knife help

Hi everyone,

My husband has a large unruptured grade 5 AVM which was diagnosed when he was 11 (he’s now 37) due to sensory sensations down his right side. For years, neurosurgeons have recommended monitoring only as the risks of treating are very high so he has learned to live with it. He is largely symptom free but has had 4 seizures which are well controlled with medication.

However, we recently had a consultation with the Sheffield centre for stereotactic radiosurgery who said they could treat it with staged gamma knife (probably 3 sessions) - 65% chance of obliterating it, 7-8% chance of side effects (aggravate seizure, headaches, numbness) - most likely temporary but 2% chance of being permanent. It feels a hard decision because he’s been advised by other neurosurgeons to leave it alone (largely based on the ARUBA trial which has its flaws).

It would be great to hear other people’s experiences

  • Has anyone had staged gamma knife for a large AVM, particularly in Sheffield? How was it and how were the side effects?
  • Has anyone with a large inoperable AVM decided best to leave it alone or made the decision to have treatment after many years of leaving it alone? How did you make the decision?
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Welcome! I can’t comment on the staged gamma knife as I had one shot that resulted in mine being obliterated. I know a few of our folks have had staged GK, sometimes a second shot as a result of the fort not achieving complete obliteration. The decision is always tough, often down to confidence of the care provider. For me I discovered my AVM when it decided to show itself via bleed, I had the option to treat with small percentage of side effects produced by GK. It made the decision a lot easier for me, I did not want to have a second bleed if i could reasonably, in respect to risk, avoid it. Once again, welcome. John.

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Hi! I am a working oncology nurse with a 7x4 x3.6 cm AVM with Lt hemiplegia. Once a specialist tried to embolize it, without success! Developed seizure after procedure that lasted almost 15 years. I decided to leave it alone . A second bleeding stroke occurred 32 years later that sent me to ICU. Even though I have been recommended gamma knife, I will still leave it alone. I have been struggling with my second hemiplegia , I have done therapy and still doing self exersize regimen and I am still working as a nurse! Being a healthcare person I am always reading about AVM cases! New England Journal published a 12 years study with a fair amount of cases with AVM. The study concluded that it is better to leave the AVM alone, to maintain surveillance and manage only what ever symptom appears secondary to the malformation! It is always tough taking decisions because you have to live with the consequences . Why I decided to leave my AVM alone? All the persons that I new with similar escenario when I got sick, tried all what science had to offer, I am the only one that is still alive!!

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Hi Jenny. I’m in exactly the same position as your husband. I have a large AVM (diagnosed in my 20s although caused a secondary issue when I was 14) and specialists have always told me its untreatable. Its way down in my cerebellum and they’ve always said its too near essential brain structures not to be risky. As I suffer very little everyday defect I have made my peace with it and left alone. In truth though I think I’ve always had this feeling that ‘one day things might have progressed enough…’. Best of luck to you both whatever you decide.

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Hi Jenny,
I found this video helpful where some Neurologists discuss % outcomes on different types of AVMs.
Bing Videos

It is unfortunate that our society spends millions on calculating the exact percentage chance of going for a first down or kicking a field goal in a football game, but we have these somewhat nebulous percentages of outcomes for these types of situations.

Hope this helps.

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Hello Jenny,

I have had two stereotactic treatments at Sheffield for my AVM and am waiting to see whether they recommend another session. The first session did reduce the size of the AVM (apparently the size of a golf ball when diagnosed) but they found that there remained a large vein/arterial flow that concerned them so they recommended another session which I accepted. As of today the AVM has reduced by a third and they will monitor to see whether I could benefit from a third session or whether to live with it as it is. My AVM has never bled but I did suffer from seizures for many years which were just put down to epilepsy. I was diagnosed at the age of 50 and was told that as it had not bled by the age of 44 years it was less likely to do so but that radiosurgery would reduce the risk further. Prior to my second session I was told that the risk of a bleed increased with my age.

Going on to the radiosurgery at Sheffield - it was OK - uncomfortable but not massively so and restricted to the day. I had no side effects after either session other than a few days of headaches and I live my life normally.

If I was in your position the question I would most be asking is what has changed between the waiting and see advice and the radiosurgery advice. For example - could it be age? or could it be better medical techniques enabling better treatment options than previously available.

I will not deny that the choices are hard and the outcomes are hard to predict but I do think that Sheffield were open and honest with me throughout and I ultimately put my trust in them.

I wish you and your husband all the best whatever path you chose.

I have a 24 yo female close family member with grade 4 AVM. We decided to just leave it like this mostly due to the Aruba study but also becuase of the direct risks of any treatment option available and we didn’t find one Dr. that claimed that it has to be treated. They all claimed that leaving it like this is also an option.

On a side note, the symptoms are ver minor, we are talking about ocular migraines for a few hours a few times a year.

Hello, I would be happy if you can post a link or at least details of/from the New England Journal study you stated. Thank you.

I’m in a similar position. Large AVM of the Cerebellum - docs say too risky to treat and should be left alone. I’m 50 now but have known since I was 27 and had my first MRI.

Thank you for sharing. Dr’s claimed that they can do it, but Dr’s don’t agree on which which treatment option is least risky and they all claimed that all of them have risks of side effects, some even fatal.

I would appreciate if you can share with us the grade and location of your AVM and if it ever ruptured.

Brain blood vessel disorder best left alone

This article was published on –

@Baby2 tried to reply with the report but the link didn’t work.

Here is the link that she was trying to post. There’s no supporting detail: https://www.ed.ac.uk/medicine-vet-medicine/news-events/news-archive/news-2014/avm-290414

The news item is dated 2014 and cites a study over 12 years, so would be based on medical knowledge circa 2002-2014.

I’ll have a look and see if I can find the actual article. It does (on the surface) sound similar to the ARUBA study but there is disagreement over the validity of the funding of the ARUBA study.

This looks like a more detailed reference to the same article:

But it is a restatement of the ARUBA trial, not a separate study as far as I can see. Rustam Al-Shahi Salman was one of the authors of the ARUBA trial.

I would urge everyone that this thread is @Jenny24 's call for help on staged gamma knife. If people want to discuss ARUBA, please find a separate place to discuss it.

Thanks,

Richard

This is definitely the ARUBA trial. It’s even referenced below of the article.
As to the ARUBA, this is the first time I heard that there is disagreement over the validity of the funding of the study, I’ve read a lot about the ARUBA and all I found is surgeon’s (who are biased, as the ARUBA is reducing the amount of surgeries, studies are even showing that surgeries were reduced since the ARUBA study) trying to disgree becuase of short commings of the the study itself (such as the length of time of the study - which was btw followed 5 years and let to the same results in 2020, didn’t give the same weight for all treatment options, age, not enough participants, etc) none of them were on the funding, I would be happy to see a source if you do have one who claiming about funding.

Regardless, what can be a fundng argument ? pharmaceutical companies funding the study with an interest that patients should stay with medcine to treat the symptoms instead of treating the source of the symptom? or goverment or insurance companies trying to avoid paying the costly procedures?

I don’t want to repeat my first comment in this thread, but think it shows the need for all to evaluate the risks from all options. Leaving it, treatment options, risks, potential impacts, a lot to consider in most cases. Is there a quality of life view? For me leaving it was not an option. There were no symptoms to treat and then wham. I did not want to experience the bleed again, and the option was a root cause decision. That being the AVM itself.

The risk of treatment vs the bleed risk vs. the research associated to bleed impacts. There are lots of people who have AVMs who never know, absent bleed in 2016 maybe I wouldn’t have known, ever, or maybe until 2017 or yesterday. I do know that my treatment risk of deficit was less than my chance of another bleed over the course of my lifetime. The result of that bleed would be unknown, maybe minor, maybe not. Nothing is exact in our AVM world, but for me the decision was made easy by considering all the facts to my personal situation. That is the main point, to assess all the options based on personal factors and risk levels.

I hope I don’t go in a circle too badly! I often use the line “at peace with the decision” as again nothing is exact. John

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My view (in the hope that it helps) is that there is no good study out there to help us decide generically whether to operate or not operate is best. So we have to rely on the views of the neurosurgeons as to what the specifics are in our own case.

There’s definitely a case to leave well alone in some circumstances, and having to, in @JD12 s own words in his own story, “mash through too much good brain” to get to the AVM can lead to no action or to using radiotherapy to reduce collateral damage. But there also appears to be good cases where intervening saves a lot of damage. I am absolutely convinced that my AVM (specifically a DAVF) was changing rapidly and without intervention I’d have been very poorly and quite probably have had a stroke had I elected to not have an embolization.

So I’m convinced there is a full range. How to choose is the near impossible question.

I hope sharing my experience helps.

Richard

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My son’s doctor (Neurosurgeon) told us that his AVM will rupture. He was strict to the point. He didn’t hesitate; he didn’t sugar coat it. I respected that blunt reality. He’s a very respected AVM-only doctor in Houston. With that urgency we moved to do the best we could for my son. Whatever do or don’t do better come from a doctor we all in the AVM community can trust. This is too important and too unpredictable to leave it to any neurosurgeon. That’s what I will say to you in your decision making. Pray all goes well !