After epileptic seizure in 2015, my wife was diagnosed with left occipital AVM (grade 3).
After her diagnose she was treated in Bosnia and Herzegovina (where we live) and underwent 3 embolizations, but her AVM wasn’t cured and she AVM had developed new feeders after last embolization making it even more complicated to treat.
At that point we were told that they cannot go further with embolization and that her only option is surgery. Considering the location and possible risks she decided not to take her chances with surgery.
In years to come, her epilepsy was out of control even with large dose of antiepileptics, so we started searching for cure on our own.
At the beginning of 2020, I found out about this forum and started reading your stories and experiences. After some time, we found few stories/examples here of a successful curative treatment only by embolization by prof. Rene Chapot (Essen, Germany). We got in touch with him, and he explained to us that curative embolization is possible in her case.
This April, after only one treatment in Essen, my wife’s AVM is completely cured/oblitared with no deficits at all - literally nothing (which is extraordinary).
The doctors that perform this are not dime a dozen - the name you mention, I have heard on here quite a few times. Apparently it is a “Dr Lawton” of Europe
Truly amazing! Glad you found who she needed - best wishes:)
@Angela4 THANK YOU! It was a long journey for us, but cannot be more happy with the outcome. She is also with no EPI symptoms (2 months) after her treatment which is a record (she had visual auras at least once a week before her treatment).
@mike_az_21 Thank you! Yes, I agree with everything you wrote. I follow Dr Lawton on Facebook and he is true magician for AVMs. Also, one thing is really interesting, and that’s usage of transvenous approach for AVM embolization. Not many of neurradiologist do that, but at least with Chapot, results look great (he is saying that there are around 90% of AVMs where cure can be achieved only by embolization including transvenous approach). So because of this I am really wondering how will treatment of AVMs be in 10 years.
Embolization is what allows me to live my life as I do right now. And, it seems to be their first line of defense - so, they are perfecting it as fast as possible.
I spoke to them about this for quite a while - in their words “this wouldn’t be possible five years ago”
My grandfather was born in the 1890s. He fought in the trenches of world war 1 and by the age of thirty was having regular migraines, regular nosebleeds. After many years of worsening health, he died in a mental hospital in the 1950s.
As far as the doctors were concerned, he was one of many men who returned from the front with unusual illnesses. Even if the doctors had the means to look at what was going on in his head, they would have been unable to do anything about it.
Cue 2016, and I get a strange sound in my ear, I go to hospital and a marvellous thing called an embolisation is undertaken through a tiny cut in my groin so that my risk of bleeds goes from what felt “very high”, back to that of a normal 50-something year old man.
It is really a wonderful thing to live in the age that we do.