Hi Jonny,
I (26F) recently joined this website as I found out in March that I have ~3cm grade 3 AVM in my left posterior occipital parietal lobe. Since then, I have been seeing different doctors for advice on what I should do about it. They have recommended embolisation treatment for me and suggested Dr Rene Chapot. I’ve been searching up posts on here that mention him and have been incredibly impressed and encouraged by the stories his patients have written. I am so sorry you have had to go though such an awful health issue and I’m happy to hear that you had success and wish you well as you carry on your recovery.
I would really like to arrange a consultation with him, however, as I live in the UK, I can’t easily get to Germany just for an initial consultation, I wondered if you knew whether it was possible to meet with him online via video link? I read on their website that they are not currently doing online consultations, which confused me as I know they have many international patients.
I’m also not quite sure who to contact about arranging an appointment and saw that you might have some email addresses I could try. Would you mind letting me know which emails these would be? I know there is a general enquiry email for international patients, however, I wasn’t sure whether there was a more direct one that would be better to write to.
I’m also having trouble accessing my angiogram scan, with the NHS hospital saying it will take up to 1-2 months to send it (I’m looking to get a consultation and treatment asap). Plus the hospital I had it done at are incredibly overwhelmed and very slow, so I know it will take the maximum time. Do you think Alfried Krupp can request it on my behalf (?), as I imagine they would process it far quicker if it came from the hospital instead of me!
I’m sorry to ask you multiple questions in a very lengthy message. I feel very out of my depth with this health issue already and now I feel completely in the dark trying to access healthcare in another country, so any help or advice would be so welcomed.
Thank you so much for reading 
-Sophie.
….Like you say there are different risks to balance, and I totally get that you don’t want the 3-4 year wait. So let me tell you my experience. I was also under Mr Radtz at Sheffield, and was quoted similar odds, but was non responsive having waited five years. However, my AVM was very high flow, and they think I may be in the 10% of people with radiological resistant tissue. So possibly just unlucky. Initially I was very keen on surgery or embolisation as a certain ‘fix’, but quite honestly the risks for me were very high, they said 40% chance of significant visual impairment either way. Whereas gamma knife was 5%. My AVM was very deep and presented a challenging surgical target, and high risk for embolisation due to flow rates. So gamma knife was the only realistic option as I had not heard of Mr Chapot back then (2019). And in hindsight I am still glad I tried it. I was diagnosed due to a bleed, from which I lost some lower left peripheral vision, no big deal. The bleed was unpleasant and took some time to recover from but I was basically fully intact. So a bleed isn’t necessarily the end of the world, although it can be. I think around 15% are fatal, and another 30% leave a mark. I recently was told of someone whose had five bleeds and is ok. So that’s one thing to consider. The gamma knife risk you’re been quoted is significantly lower than the embolisation risk, but you also carry a ~1% annual risk of bleeding until obliteration (higher if you’ve had prior bleeding). A bleed may never happen, be years away and may be harmless, but it’s an open ended risk. But surgery / embolisation risk is all up front, today. I did have my AVM successfully embolised by Mr Chapot in a single session. It was a text book surgery, and they were all very pleased, however, I woke up with total hemianopia on my left side (right sided AVM) . They expected this to resolve when swelling subsided but it has not, and is the same today. I also had a complication from the catheter and have a significant narrowing of my right femoral artery which prevents me from running. I can’t drive due to the visual field deficit, and although I’ve adjusted amazingly well and live normally, it is something that I live with every day. So, do I regret the operation? No, because I’ve eliminated the risk of the AVM bleeding again, and I knew that was an open ended risk, and mine already bled twice. Once at 20 years old (undiagnosed at the time - but I’ve only had that headache twice) and again at 40. It helps me be at peace with my visual deficit knowing that I tried every low risk option and didn’t rush into anything. I’m not saying that you shouldn’t go for curative embolisation at all!! I am just saying that my perspective changed throughout the process. I became relaxed about the bleeding risk even though it had happened to me before, and the five years ‘waiting’ were not spent waiting, but living life to the full, with my full vision. I had a great few years. At the end of it more difficult decisions and then surgery one year ago. Mr Chapot and the hospital in Essen were excellent throughout, and will take great care of you, but they cannot be sure whether you will have side effects as my case shows. They didn’t expect serious issues, but they can’t say for certain and we were all surprised to find such a significant loss of vision without any recovery. The risk of embolisation is that you are making an abrupt change to the blood flow which can cause swelling and venous congestion, potentially damaging brain tissue. Gamma knife is a gradual process giving the brain time to adjust, which is less likely to cause radical side effects, although not risk free of course. I should say that I am 14 months post op, and it is possible to recover some level of vision for 2-3 years as collateral blood supply develops to compensate for whatever supply has been lost, IF that’s the problem. No one really knows exactly why I’ve lost the vision.