We discovered that I had a brain AVM in my cerebellum when it bleed in 2012. I had then an embolisation which was partial because they were not able to reach a very small part of the avm. After that I had some angiogram that showed that the residual parts shrinked (they became very small) until one angiogram where we could almost not see the AVM anymore. Unfortunately in 2016 they saw that it became suddenly bigger so they did a craniotomy to remove it. It worked and we couldn’t see any AVM when they performed an angiogram on year after the surgery. They seemed to say that I dont need to have any follow up anymore however I disagree with them since i know that in some rare cases the AVM can grow back. I dont think that they are bad doctors but they are surgeons and usually they just focus on their surgery and not the rest of the story.
So do you have any name of AVM really really good specialist, people who know the last science and are up to date about it ? It can even be researchers ?
I thank you very much for you help, I will really appreciate it !
I just found your request and I wish I could remember all our European members and point you to some of them. The people I do remember who were treated in central Europe or took advice from central Europe are: @berlin112 and @Christine_Ottens. If I remember anyone else, I’ll write.
Did you get to meet @Corrine on 7 July? I don’t remember if the London meet went ahead that day or not. If you were able to get to London, Corrine definitely had some serious advice on her rather complex AVM, as I understand it, so NHNN in London might be a good recommendation.
Hi Claire. While Jack’s case was conferenced in Germany with Europe’s leading specialists for radiation and the UK for Vascular Surgery that part of it was done by Jack’s medical team so I don’t know who it went through.
I came across this though which could be a place to start. https://www.avm2018.org/sites/default/files/avm_programme_2018.pdf
If you look at the second page (and possibly further in the booklet) you will find the names of presenters which would be some of the best in their field, some of whom are in Europe. I would suggest you google their names for contact details (with Neuro as part of your search) and if you are having any trouble with that then even contact those that are running the Congress.
You are correct in that some AVMs can grow back and it is also most likely to happen in the teens to 20 which is when this occurred with you because of hormonal changes and a structurally growing brain. While it is unlikely to happen to you again you are concerned about it and that should be taken seriously. An MRI taken every couple of years would pick up on any changes, is not invasive and would give you the reassurance you need to get back to living your life and moving past this seriously traumatic phase. I hope I have helped in some small way. Keep being strong and advocating for your welfare! Good luck and God bless. Christine
This stream is also worth looking at Claire. https://www.avmsurvivors.org/c/recommend-a-doctor-therapist-or-clinic-positive
I am an AVM survivor from Europe too (Transylvania, Romania). I did a serious research last year when my AVM was found, and I found out that Europe is represented by Andreas Gruber from Austria in this domain in the EANS. He is no longer doing surgeries, he leads the Kepler Universitätsklinikum from Linz, but he has a great team of neurosurgeons, I personally met Dr. Wolfgang Thomae http://www.der-neurochirurg.at/ who offered me very useful information and advice regarding my case. Finally I could not do the treatment there because I could not afford it financially so I was treated in Hungary by Dr. Istvan Hudak, who is also a very good professional with serious experience (he has already done over 17.000 DSA interventions) and I can tell you that he does periodical controls even over 3 years after the last intervention, which is very important, because even if AVM’s cannot literally grow back but they can find a different path after one is embolized.
I hope this information will be helpful
Although you didn’t manage to make the London meet to talk over things in person, I am more than happy to give any advice or experience you’d like via this forum or on another platform (Skype, whatsapp phone call ect could exchange details via PM). I definently recommend the NHNN in London, I can’t think of a better place I could have gone. I really appreciate that as soon as they picked up that my AVM was a particularly complex and high bleed risk case - they went to have two UK wide meetings to decide the best step of action with all the specialists and appoint the best specialist to treat me for my case. I couldn’t imagine feeling in safer hands anywhere else to be honest.
Let me know if I can help!