Hi everyone, i didn’t log in to this website for around 5 years…time go quick!
Back in 2015 got diagnosed with large AVM in the right parasagittal subvertical pairetal lobe. The AVM AP Measures in diameter, on the coronal images it appears to cross the midline in a subfalcine position. A hypertrophied falcine and cortical veins on the right side are present Representing the drainage on the AVM. The arterial supply appears to originate from the CEREBRAL anterior circulation. The AVM is causing Considerable compression of the body of the corpus callosum best appreciated on the sagittal images. No other lenses of Identified in teh brain and extra axial space.
Conclusion: large right parietal supracallosal avm.
Had gamma knife surgery done in 2017 which didn’t made any difference. Last month had cerebral angiogram done. Now waiting for consultation to discuss further treatment,doctor ( Paul Bhogal London Royal Hospital) recommended to do embo it might need to be done in 3times. Trying to research about surgeons in Uk and Europe ,want to get second opinion.Maybe anyone had treatment done in London Royal Hospital with Dr Paul Bhogal?
Found here many good reviews about Dr Renè Chapot in Essen,Germany anyone maybe know any information about how to contact with him? I found some info…but best advice i think is on this site!
Nice to see many old members and still active! Also many new members and good stories!
I can tell you that @Indalo was saying only a day or two ago that he is off to see Herr Professor Dr Chapot, so I’d liaise with him.
I had my dural arteriovenous fistula embolized by Dr Norman McConachie at Queen’s Medical Centre in Nottingham and I have every confidence in him, so if you fancy a trip to Nottingham, you could look him up. I would have thought that the NHNN in Queens Square would be just as good and much closer, though.
I’ve had a consultation with Professor Rene Chapot and am aiming for treatment in September. I have a similar story to you, had gamma knife in 2019 with minimal effect probably due to the high flow fistulous nature of my AVM.
He works out of the Krupp institute in Essen and you can make an enquiry for a consultation using the email below. So far he is the most knowledgable and experienced neurosurgeon I’ve spoken to when it comes to embolisation. I’ve done some research and only found good things so far. Here in London (I am under KCH) they aren’t practicing transvenous embolisation. It’s a somewhat newer technique which may be perceived as higher risk due to the fragility of veins and tortuous pathway they can take, but the few early studies from those using Chapot’s technique look promising (though more data is needed). I suggest searching studies by Chapot and Mani Putheran (who learned from Chapot and works at the Walton Center).
@Indalo thanks the info! I will try contact him after my hollidays. i read google reviews and here people who have treatment with Professor Rene Chapot and all is positive! Hope you will get treated soon!
@Indalo@DickD . Hello to both! I had a curiosity that I’ve had for a while since my son had the Embolization and Gamma knife after that. I can tell both of you have studied this for years. If anyone other than these two gentlemen or ladies want to share your thoughts please do so. How long does the embolization agent stay inside of you without breaking down? Is it for life? For Indalo that you want curative Embolization its a good question if you’re cured for life or only until the Embolization agent remains intact in your brain. I looked for info online but nothing. My son also received Gamma Knife and hope it works but what if it doesn’t like Indalo’s. My son is doing so good nowadays I will do my best to keep it that way. Thanks for any replies.
Easy answer, I’ve no idea. I’m currently working on the basis that it lasts a long time, otherwise even the UK NHS wouldn’t use it as a stop gap. (I do think we go with the cheaper options over here, and I can see good cause to do so). So, personally, I’m working on the basis that it’s basically permanent but if I start to get any effects that are unusual, would take action. I’m 6¼ years post op at the moment and it’s completely out of my mind. I know I hang around here a lot, so it could very much be front and centre of my thoughts several times a week but honestly I’ve “moved on” as far as my health is concerned. I’ve even had time for other medical issues (late 50s male!!) to start to cause trouble so there are new, wholly common, health issues to deal with. My assumption is that it only gets more frequent that new issues arrive! Hurrah for free healthcare! I recommend an NHS model for many more countries.
If someone else knows it’s good for 10 years or 20 years (or 7!) then do speak up! My assumption is that if it starts to break down, the only recourse will be a craniotomy. I’m sure there’s no way to fix it the same way twice.
I do get the impression from reading stories on here about extremity patients or facial patients that embolization seems to be very temporary. I’d be surprised to find either of those groups of patients lasting more than a few years but my assumption is that that is perhaps due to the blood vessels being outside the brain. Inside the cranium, inside the bone dome, I think it is better protected, not regularly flexed, not bumped or knocked and therefore more likely to last longer.
Very happy to hear from anyone who knows the answer to this, though I hope to live in innocence for plenty of years yet.
Sorry that your son has an AVM. Gamma knife is quite effective generally. Did they give you odds of obliteration and do you know the dose they gave? Was it a single session? I was told 80% chance of obliteration at 4 years but around 10-15% of patients are minimally responsive and causes for this are speculative. Genetics possibly and also high flow AVMs can be more challenging (which is the case with me). Although it didn’t work for me the chances are strong that it will work for your son. My advice is to assume the best and enjoy life.
Embolisaiton if successful should work for the long term. I don’t say ‘for life’ because there are no studies that show 50+ years, but the advice I have received from several neurosurgeons is that it is very rare in the case of a brain AVM to see it recur once successfully and completely embolised, except in children where recurrence can be more common.
@Indalo thanks for reply. No odds were given thou. The Gamma knife radiologist told me he used 19 gray. The machine used was Elektra Icon. You know in my world of curiosity that sometimes does get to my head is my lack of understanding how the radiation will obliterate the niddus plus the dried up Onyx agent inside the malformation. How is that going to work? Where does the dried Onyx go? Yes I agree that my questions seem too complicated but I would love to understand the mechanics of this obliteration dream.
I do hope that your curative Embolization is a success and you’ll tell us all about it. For my son it’s in beginning stages of obliteration but like you said he is enjoying his life going to school and going out with a possible new girlfriend today. His old girlfriend actually broke up with him days before his Embolization and failed Craniotomy because she couldn’t handle his situation. Hard times for him but he is doing better. Thanks for giving me hope ! God is with us.
I don’t think the radiotherapy will affect the Onyx. Rather, it is focussed on scarring up the remaining vessels. As they scar, they close up. The Onyx is there to fix the larger vessels. The radiotherapy finishes off the smaller vessels by scarring them.
@DickD so interesting! Hope I never had to know all this but you make a lot of sense as larger vessels and small vessels and where the Onyx is and where the radiation went. I was thinking the Onyx was every were in the malformation and radiation had to penetrate this embolization agent. Thanks !
@DickD we all like that you hang around here because you do give great advice and information as a survivor yourself. Not like me as a dad not as a patient. Not the same thing as I’m not living with this… my son is. So please do stick around! We all hope this is a permanent fix as the Craniotomy would be a bad option for my kiddo being so close to motor cortex . I also hope and pray the gamma knife works so this embolization question would be not important anymore. Take care of yourself as you move unto different late 50’s health issues.
Radiation obliterates the AVM by causing scarring to the inside of the vessels. The scar tissue grows from within and slowly closes off the blood flow that represents the AVM.
With embolisation the liquid embolism agent blocks the blood flow preventing the ‘shunting’ and this may be done in one session or several sessions depending on the specific AVM. They want to avoid making a dramatic / abrupt change in blood flow because this can increase blood pressure to surrounding vessels which are often primitive due to the lack of blood flow they have had (due to vascular steal from the AVM). For the same reason they tend to control blood pressure for a short period following the procedure to minimise risk of such breakthrough bleeding in surrounding vessels.
Your radiologist should have given you an indication of the chances of success. Otherwise how can you make an informed decision to accept the gamma knife treatment? You may have forgotten what they said and perhaps you are able to contact them and ask for clarification. My experience at Sheffield is that for ‘small’ AVMs treated in a single session they quite around 80% obliteration rates. Larger more complex AVMs may be lower but I’ve seen studies showing good obliteration rates (60%+) even for AVMs requiring fractionated treatment.
