Hi Ana, sorry to hear what your son has had to go through, especially the recurrence.
I certainly did not say there is a ‘promise’ of a cure, that was never suggested at all. I wouldn’t want anyone to misinterpret this. There are no certainties, and there are risks. But there is a good level of confidence that my AVM can be occluded with a low risk of recurrence. Overall success rates for curative embolisation are around 60%, and this is from a patient cohort selected as being suitable….ie…not very good at all. One of the major issues is that it’s often not possible to sufficiently occlude the draining vein(s) via the arteries, and that’s where transvenous / a dual approach appears to have far higher efficacy. If the footing of the main draining vein isn’t occluded there is a reasonable chance of recurrence. What I’m hearing is that the transvenous approach is traditionally perceived as more hazardous, but early studies from those who have specialised suggest that actually the complication rate is low (in the hands of a skilled operator) and the efficacy is far higher than a purely arterial approach for carefully selected patients. Mani Putheran has a 95% success rate in his relatively small study, using the teachings of Professor Chapot.
My options are to try an arterial only approach, possibly in two or more sessions and that leaves a 50/50 chance of still requiring a challenging surgery due to my AVM’s location. I have been told that my AVM is very well suited to this because it is fistulous. So while there is no promise of a cure, the risk of causing bleeding is roughly equivalent to a single year of observation, and the cure rate over 700 patients is very high, with a low risk of recurrence. The other factor I consider is that I have a large venous aneurism that is possibly growing based on the latest scan, and SRS has not had any material effect (due to the fistulous anatomy). So while there is no guarantee and nothing is without risk here, I feel optimistic but realistic about the decision.
PS: helpful paper here on embolisation including discussion of patient selection, techniques, what is required to achieve true occlusion and the risks of recurrence.
If I remember good Prof. Chapot told me that he already did over 1,600 treatments (not 700 as you stated), maybe the research were done on 700. I suggest you to check this factor up withhim again, as it may be an important factor for the forum readers as for their decision making process, I believe he told me he does one procedure a day and sometimes even more than one. I believe that he busy only with this meaning that he is focused on AVM’s which makes him a world expert in AVM’s.
Makes much more sense, I think so as well that this is what he told me, maybe next time if you talk to him as him and this way you can update the comfirmed info for the readers.
The other thing I’d add in here is that facial AVMs seem to be very, very difficult to tame. (I’m going by the stories I’ve read on here rather than hard statistics). So I’m more comfortable that @Indalo may well have a better outcome than you’ve seen.
Yes it is old, but still the best single paper I’ve found looking across the available embolisation studies out there (at that time). It also addresses the challenges quite well. I agree techniques have moved on, but are still not thoroughly proven in larger studies.
Fistulous means direct connections between feeders and main draining veins. These larger connections (I’ve also seen them referred to as macro fistulae) lend themselves to embolisation but are also associated with lower obliteration rates in SRS.
I asked about the “fistulous” word because mine was described as a dural arteriovenous fistula: and yes, it drained into one of the major venous sinuses of the brain. DAVFs do seem to be a little more often treated by embolization, so there appears to be corroboration there.
Mine has held well for seven years now, if that gives you any encouragement. We are, after all, all in need of a little encouragement in the matter of subjecting ourselves to surgery of any kind.
Thank you both for the update and level setting. I am so glad you have hope and a viable path to treatment!!! Thanks Dick and best of luck Jonny : ) Ana
Hi Jonny, I am sad to hear your Radiosurgery didn’t have a more favourable outcome. I really hope you have success with Rene Chapot.
I feel I may find myself in a similar scenario in two years time. I had my two year post gamma MRI in April 24. Unfortunately minimal reduction. I also have a large Varix and was told my AVM has ‘intra-nidal zones of rapid artery to vein shunting’ and is very ‘high flow’.
I will be very interested to hear of your progress. I wish you the very best.
I write to update on my embolisation by Rene Chapot at Alfried Krupp. I had the procedure on Thursday 26th Sep, it lasted 6 hours and the AVM is completely occluded / cured. I will be discharged tomorrow just five days after. I’ve been told I can live normally now, do anything I want, and have zero risk of future bleeding. They will check in one year to ensure no regrowth (which is very rare), but they have never seen a regrowth after one year. This is the good news!
I should also say that presently I have lost a lot more peripheral vision on my left which was explained as a risk of the procedure. I would describe it as concerning but not disabling, but we will see when I start walking down busy streets . There are two possible reasons, ischemia or edema. Ischemia in this case means the migration of embolic material (glue/onyx) into healthy arteries unintentionally/unavoidably, which tends to cause more permanent adverse effects as healthy blood flows become blocked. Edema is swelling in the brain which is a natural (temporary) consequence of the procedure. My scan does show some low level ischemia which is not an alarming, but it also shows a lot of edema, so the team are hopeful that my vision will improve as that swelling diminishes. Of course if it’s the ischemia causing the problem there are no guarantees. This can take several weeks or months to resolve, and I will pursue neuro optometric rehab as soon as I’m back in London. I have another talk with Mr Chapot tomorrow before I leave.
I now have to focus on resting, and then coming to terms with the new reality. The AVM has gone, but I also have a new challenge and may need to make adjustments. For example, driving may not be possible, I don’t know yet, certainly I can’t right now. I will bump into things more. My kids will take the piss out of me, they do anyway ….But if this is the price to ensure that my AVM never bleeds again, it will be worth it. I knew the risks of action Vs waiting and am satisfied with my decision even if the vision doesn’t improve. I have so much to be grateful for. My central vision is perfect, I can read, see loved ones faces etc. I have no other new deficits.
I will continue to update here to let you know how things settle. Thank you to everyone here who has supported me on this weird journey we share, and I will continue to follow yours also. Please get in touch if I can be of any help.
Best
Jonny
. There are two possible reasons, ischemia or edema. Ischemia in this case means the migration of embolic material (glue/onyx) into healthy arteries unintentionally/unavoidably, which tends to cause more permanent adverse effects as healthy blood flows become blocked. Edema is swelling in the brain which is a natural (temporary) consequence of the procedure. My scan does show some low level ischemia which is not an alarming, but it also shows a lot of edema, so the team are hopeful that my vision will improve as that swelling diminishes. Of course if it’s the ischemia causing the problem there are no guarantees. This can take several weeks or months to resolve, and I will pursue neuro optometric rehab as soon as I’m back in London. I have another talk with Mr Chapot tomorrow before I leave.
….But if this is the price to ensure that my AVM never bleeds again, it will be worth it. I knew the risks of action Vs waiting and am satisfied with my decision even if the vision doesn’t improve. I have so much to be grateful for. My central vision is perfect, I can read, see loved ones faces etc. I have no other new deficits.