Hi, I need some information

I am Ruby my great niece 13 year old Olive had a bleed on the right frontal part of her head on the 14th November 2020.
After 4 weeks we were told she has an AVM, I have been reading on line extensively and found the name of a man called Rene Chapot…please does anyone know of this man and what are your thoughts. My niece and her husband and family have been plunged into hell and I want to find out about this man who I have heard speak and read about.
Many many thanks,
Ruby

Welcome Ruby. I hope we are able to be of some assistance. I have no knowledge of Rene Chapot but did look at google and ddid a quick read. It’s likely someone in our group has possibly been treated by him. I had a bleed in 2016 due to an AVM in my left temporal. Embolization was determined to not be an option for me, my choices in treatment were gamma knife and craniotomy. It was ultimately determined over a period of months that gamma knife would be the least risky route.

Where is your niece located? There are a lot of great places to deal with our AVMs, and in a fair number of cases the best option is to monitor. There are so many variables in dealing with these. I was comforted by having a neurosurgeon I trusted completely. My thoughts are with you, your niece and her family. Take Care, John.

Hi John,

Thank you for your response…I hope that you are doing better now, you don’t say if you are finished your GKnife treatment.
Olive is in Bristol and being operated on as we speak, it is impossibly difficult for her mum she has only just finished her own serious health issues!
The surgeons at Bristol saved Olives life when she went in with the bleed god bless them, the reason I am exploring is they have done an opp last week on the AVM and stopped as they said it was too risky and are replacing her bone today. This poor kid is going through enough and I want to make sure that the next move is done by the best person as there is no room for error!
Have a great Xmas…as best as you can given C19
Ruby

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Sorry to hear about the removal being too risky, it is a great option when the risk allows it. A really good idea to explore options for further treatment options. I hope today goes smoothly and she can begin her recovery from this phase, these are a journey and patience is so important! I struggled with patience. I have completed my GK and got the word I was waiting for “obliterated” in February 2019. Take Care, John

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Ruby,

We do have a number of people who’ve been treated by Professor Chapot. I’ll invite them into this conversation.

I hope you and your wider family have a good Christmas, after the most difficult of years.

Richard

Richard,
Thank you, it would be so very much appreciated!
It is a very difficult situation as the consultant she is being treated by in Bristol is so lovely, but this is not a situation to not have second opinions!
I watched a forum led by Singapore national University Hospital Live Stream, he was so enthusiastic and confident talking about the various ways he successfully does his procedures.
I looked further into his credentials but I wanted to connect with people that had been directly treated by him.
I look forward to hearing from these people and hope they are all doing well!
With thanks,

Ruby

No problem.

I think @corrine has a rather complex AVM and her UK doctors have indicated that to do further treatment for her, they would look only to one or two other experts, among which, René Chapot was one. He is clearly held in very high esteem.

We don’t always reply very quickly on this forum but I hope we can get you one or two who can share their experience. I have no doubt but the man is first class.

Very best wishes,

Richard

Hi Richard,
Are you saying Corrine lives in the UK and has a complex AVM and that the doctors are considering Proff Chapot to help with this??
As the consultant tried to operate on the AVM Thursday last week and they gave up saying it was too risky.
Monday this week they replaced the scull as they have decided to use another protocol for Olive…
Gamma Knife etc.
I have read about Dr Chapot that he has tackled difficult AVMs with great results…I was hoping to hear from people that had been treated by him.
Thank you once again.

Ruby

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Richard,

Has anyone been treated by Mr Richard Edwards in Bristol Hospital…he is a wonderful neuro surgeon but I would love to know what are your thoughts?

Ruby

Ruby,

That’s exactly what I’m saying. I don’t think Corrine is planning to see Prof. Chapot but in her assessment (for a second attempt on her complex AVM, I think) I have in mind that her neurosurgeons at the National Hospital for Neurology and Neurosurgery in London (“NHNN”) were saying that to operate further would be something they would only do with Prof Chapot or another doctor.

I’ve not heard of Mr Edwards; Dr Chapot’s name I recognised straight away. I might have a look to see if there are any references I can find.

So, Olive’s docs are looking towards gamma knife as the remaining treatment? This is pretty common, to be honest. And we do have an excellent facility at Sheffield for gamma knife. If appropriate, I expect Olive would be referred there. I’d also expect her current doctors to seek an assessment from Sheffield, based on her most recent scans and report.

Is embolization an option? I’ve seen Dr Chapot’s name associated with embolization treatment (indeed, I think Corinne’s would be an embolization). Do you understand these different options?

You’re not alone.

Richard

Ruby,

I can’t see a Mr Edwards in the UK here. I do know that @memyselfandeye is in Bristol so may be able to share who he has seen over the years.

Richard

Hi Richard,
I am sorry to bother you on Christmas Eve but I have a question that maybe someone on this platform might have the answer.
Olive has come home for a few days for Christmas and her mum and dad have put into place bells for her to ring if she does not feel well.
Does anyone know of an early alarm device that can be worn that gives warning of changes in the body or on-coming stroke?
I would really appreciate any feedback.
Merry Christmas to all…hope that 2021 brings only good news for everyone!

Ruby

Ruby,

You can ask stuff like this at any time, even Christmas Day! Others might know of something but I don’t. The only pre-emptive device I know if is a young man (couple of years older than Olive) who has an alert dog who can sense when he is becoming poorly.

The main comfort I found for myself was either to tell those about me that if they should see me in trouble, to know what to do. And for when out and about on my own (for example on the bus getting to our from work, since I was not allowed to drive for a while) I wore a medical wristband with my medical details and my wife’s phone number on. I also put the same details into the emergency details of my mobile phone.

Simply having people around you who know what to do if you get into trouble is the key, I think.

Ask anything you like.

Richard

Hi Richard,

Thank you for saying that I appreciate your advice and input…
It’s funny that you talk about a dog sensing a stroke, it was Gem the family dog that went ballistic barking incessantly the night that Olive had the stroke that alerted everyone!
I was looking for something that would alert Olives parents day or night even when she was asleep.
Once again thanks and merry Christmas and a happy healthy new year!

Ruby

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Hi Ruby,

I was treated by Prof. Rene Chapot in 2018. Have story posted here on this portal: Cured AVM with staged embolisation by prof. Rene Chapot at Alfried Krupp Hospital in Essen, Germany

Happy to talk to you if you would like to hear more details.

You can also watch some surgeries I found professor was streaming online for one of the conferences:
https://alice-the-course.info/live-cases-2018

Yes please would love to talk if you have the time??
I am so grateful for your sharing!

Ruby

@OliveKitty111 if you still need any info about prof. Chapot feel free to write. My wife was cured by prof. Chapot (grade 3 AVM) with no deficits at all.

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