I’ve been reading and documenting myself from the experiences of others…and I’ve come to the conclusion that many AVMS that were found before the rupture, that were treated with Radiation… ended up ruptured after Radiation…
From your experiences, what have you seen in the group or maybe even from personal experiences…Can Radiation make them rupture?
Thanks
This sounds like a very superficial post; presented this way, it risks spreading unfounded fears (or fears based on hearsay or “a friend of a friend” stories, as the Italian saying goes). Attached is the link to the study where the risks are discussed scientifically. It discusses risk percentages associated with different characteristics, and only in some cases is the risk higher than in untreated cases; the Dmin is highly predictive.
For example: Large Avm, older age might be more risky
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The entire objective of radiotherapy is to reduce the stroke risk, so the majority of people should expect to achieve a reduction in risk, not the opposite.
I think @Dado’s addition is very helpful, as it gives a sound basis and indicates that there appears to be an increased risk of rupture with larger AVMs treated with below a certain level of radiotherapy.
On gut feel, after reading about other people’s experience here and understanding about radiotherapy simply from reading the posts on this forum, I would have said that it appears that the risk of rupture doesn’t go away quickly with radiotherapy and that that is why some people have a rupture while waiting for the radiotherapy to do its job. It is interesting to read in the article that @Dado shared that there appears to be an increased risk of rupture in some circumstances but for most circumstances, an improvement in risk reduction is gained. I’ve not read the full article. I’m encouraged that this is a modern study.
It is true to say (again, based on reading many posts from others on this forum) that in some cases, patients are advised by their doctor that pursuing radiotherapy is inadvisable as their AVM looks more liable to rupture during the time that the radiotherapy takes to work: not necessarily that the risk of rupture is increased but simply the time taken to heal leaves that rupture risk alive for some years. However, to balance this, there are also many cases where radiotherapy is recommended as the best, most appropriate route to treat some people’s brain AVM. So you definitely need to understand from the doctor what their recommendations are (and I guess why).
So, the underlying reason why some people had a subsequent rupture could be simply to do with the time taken to get to a lower rupture risk, or if their AVM is large and the treatment offered below a certain level, it seems possible that their risk may have elevated over time rather than reduced.
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It cannot be ruled out that in some cases any intervention (including radiation) may contribute to ruptures due to changes in haemodynamics, but given that SRS is so slow acting it seems unlikely, and the best quality studies on this suggest the opposite, with some suggesting a moderately protective effect from SRS. It is suggested this may arise due to hardening / thickening of AVM nidal vessels during the latency period, prompted by the radiation….ie….rupture rates post SRS appear slightly lower than those of non SRS patients once adjusted for other factors. That’s my understanding.
I don’t think it’s super clear but certainly I have never seen any data suggesting an increased risk of bleeding post SRS.
I would caution against arriving at any conclusion based on anecdotal information because we all hear all sorts of things and every case is different. Stick to hard data, and the tailored advice of neurosurgeons who can assess your own particular AVM.
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Hear! Hear!
Everyone is different and everyone’s physiology is slightly different, so we need the assessment of a professional about the situation they can see on scans as to the risks pertinent to us, not generalised statistics.
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i had 3 avms - 1997, then 1998, then 2003. I then had Gamme Knife first 2005, and another dose on 2008. Touch wood, but i have not had another bleed since, and thanks to the radiation, it has shrank almost all of my dodgy viens down to almost nothing.
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Hey Rich, thank you for sharing your story with me…can i ask…they didn t see all of them in te first place?
Also remember that it’s possible the AVM would have ruptured without the radiation. Correlation isn’t causation.
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Hi @Rich2
Do you remember how big/small were your AVMs and where exactly were they located?
I’m currently in the latency period, almost 3,5 months after GK, so it would be interesting to hear what were the radiation results in your case (i.e. did any of your AVMs obliterated completely and after what time after GK did you see the first obliteration signs?)
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hi Amareea. sorry i dont quite follow what you mean there?
AVM it bleeds all over the place. I had massive strokes, my MRI is a big old screen thats for sure. My side was on the left side though (not right)
AS i remember (dont quote me im not neuro doc!) i had very large bleed veins across my dodgy brain. This is where the most likely bleed would occur. The last time i had another MRI and saw my doctor (maybe 6 years ago) he said that he could no loner see any large bulge viens anywhere the damaged areas. Of course, i still have issues - GKR does not bring brain back lol! - but now theres a lot less chance of another bleed. Touch wood, i wont have another, and hopefully same for anyone else in the same situation. Thank god i was able to use GKR.
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