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AVM Survivors Network

Cured AVM with staged embolisation by prof. Rene Chapot at Alfried Krupp Hospital in Essen, Germany


#1

I discovered my AVM in August 2017 almost by chance, I was 26. In May same year I started to have constant headaches which no painkiller could stop. Plus eyesight echoes occurred from time to time. I found it strange but kept repeating myself “this is all because of stressful project and too much work on computer” as , by the way, was “confirmed” by first doctor who prescribed me relaxing massage and sedatives… In a month just in case I decided to go for MRI as symptoms didn’t go away. That is when for the first time I heard words that supposed to scary sh*t out of me “there is a ticking bomb in your head, and if I were you I would rather hurry up doing something about it”. Of course, as probably for most of you here, this was the time to cry, reflect on life for a bit and then start looking for a solution to make lifetime decisions.

After going through angiography I was diagnosed with arteriovenous malformation of approx 3.5cm in diametr in the parietal lobe (Spetzler Martin Grade 3) and right anterior cerebral artery aneurysm at least 4-5 mm in size. Crazy, right. But I believe I was very lucky - it never bled, got no serious symptoms.

I talked to more than a dozen of doctors across countries to gather as much information as it was possible to bare. Read probably hundred of articles, blogs, watched dozens of interviews, conferences and vlogs. And as many of people wrote here every single opinion was different from the previous one. I got as many suggestions as one could possibly imaging for my condition and in different variations. I got operable and non-operable, congenital and acquired, etc. characterisation of my AVM. Doctors advised me to operate it and to just wait-and-see, craniotomy with and without embolisation, with possible follow-up radio-surgery treatment as well as solely treat this thing by embolisation.

After an attempt to live normally trying to stay with It as is (I usually practice lots of sports and travel every second week) I decided I just couldn’t live with it as thought of sudden bleeding didn’t leave my mind for a second especially it was itching at my happiest moments. So I had to do something with it and after I carefully considered all the risks I decided to go for a treatment. I of course was thinking in favour of embolisation (as the least “invasive” option in my case, though only one doctor said it may be possible to cure it just with staged embolisation).

But to be frank I didn`t choose modality but I chose doctor. After speaking to most of the doctors specialising in bAVM in Germany, Ukraine, the US, Israel I only felt deep trust to Professor Rene Chapot (whom I found on this forum reading through some stories).

I wrote an email to him, he replied directly quite quickly and invited for a consultation. He was first professor who didn`t take a penny for an hour that he spent with me explaining how he sees my treatment options. He was so passionate about the topic that it was so obvious he loves his job and does a lot of practice and research. He and his team treated lots of AVMs which just reassured me that I am at a right place.

So I went through 3 stages of embolisation at Alfried Krupp Hospital Ruettenscheid in Essen, Germany. Each stage with few weeks break. After each procedure I got temporary loss of peripheral vision on the left (for about a week) due to swelling. Now after a year since discovery I am recovered, no major deficits (just tiny blindspot which makes troublesome reading numbers or counting rings on Audi logo), NO pulsation in ears - so silent in my head now. Aneurism already after last embolisation started to shrink. Waiting for a check up in 6 months. Hospital was amazing too, staff very friendly and helpful (some speaking Russian, majority speaks English). My AVM and aneurism seems to be cured with solely embolisation and fingers crossed for my last check up.

Please feel free to reach out to me in case you have questions and can make use of my journey and experiences. Happy to provide more details and photos. I really owe to this community as here I found my rescue!


#2

Congratulations on being recovered with no major deficits I’m glad you attacked your AVM before it bled!


#3

Congratulations on your recovery so far, and thank you for sharing your opinion & story! You seem like a very strong, proactive, and positive person :slight_smile:


#4

Thank you Mike, hope you too well recovered after horror you`ve survived! I wish you strength and many good years ahead!


#5

Great to hear! Take Care, John.


#6

@Kasumkina, how are you doing now? Thank you for sharing your positive experience with your embolisation treatment by Dr Chapot. I am wondering how you are doing and how you look back on your experience now that you are a little bit further in your recovery. as I will have a consultation with him in december. Thank you!


#7

Hi Kare,

Thanks for reaching out! Hope you are doing as good as it may be possible in such situation!

I am very well and recovered. After each embo I only was less than a week in the hospital and within 2 weeks was absolutely independent and functioning well. After last session when prof. Chapot closed most of my AVM i needed a bit more time as my peripheral vision was sometimes disturbed but it stabilised within 3 weeks so I even went for a festival in other country. Now I only have little blind spot which is within norms even for ppl without any deficits. Still sometimes have problems with quick read of figures (but that is really something to get used to). By the way there is hardly any mark on the body after operations. I came back to sports now.

I showed all my embo images to one of the leading doctors in Kiev and he has confirmed that it was done on the highest level possible.

I have to go for a final check up in January to see if indeed whole AVM is closed and there are no changes. Also they need to see if my flow related aneurysm also shrank after AVM was obliterated. Prof. Chapot suggested it will go away after some time and it became smaller even right after last embo session that we saw on the images.

Prof Chapot is very passionate and he will show you in detail what cases he treated. I am sure if you tell him my name he will remember what he has done in my case.

To me his team is also very knowledgable and direct. Seems like they will not promise or commit to anything they wouldn’t be able to deliver. I talked several times also with doctor Starke, so you may want to talk to him as well after.

Hospital is great and seemed to have best in class technologies for radio-surgery and infrastructure in high intensive care unit. Staff in this unit was extra caring and attentive.

After I was discharged from the hospital and was back home when had some concerns I just wrote email to prof Chapot and very quickly got detailed responses from him with suggestions that really worked.

Let me know if you would like to talk on the phone maybe I could share more if helpful. Hope this will give you courage and hope! Let me know if you have any other specific questions.

Be strong!

Alina


#8

Thank you for your elaborate and kind reply! So good to hear that you are doing well and that you feel recovered. I will keep my fingers crossed for your final check up in January.
Ultimately I have decided for surgery. I have read many publications, recent and less recent, and made the decision based on location & characteristics of my avm. I have good trust in the advice of my own neurosurgeon. So I will not meet dr. Chapot to discuss embolization. But thank you again very much for sharing your positive experience with him.


#9

Sure, this is soooo specific from case to case.

Where are you going for surgery?
Please do let me know once you are done with it! I am sure it will be all good after-all and soon you’ll be back to normal happy life :slight_smile:

Be strong and think positively! When is the date? so I could send my supportive good vibes to you too!

Alina


#10

Thanks for sharing your positive story. Did he use coils for your embolisms ?
Hopefully your story gives people hope - A great doctor can a huge difference.

Angela