Hello,
As many of you have probably seen from my previous posts, I’ve found out that I have multiple cerebral vascular malformations…
I am devastated.
Nothing can be done… I honestly don’t know how to accept this. I can’t believe it’s this serious and I just can’t understand… why… and how…
I’m writing this here because I need advice… how do I get used to the thought that I might die at this age?…
You are the same age as my daughter. My heart goes out to you, and you ask a question that is very difficult to answer, but hopefully we can help you put the pieces in place to help you navigate it some. We have quite a few people here with untreated AVMs, and a lot of challenges associated to them, not only brain but many who are in a constant battle with AVMs all over the body. I can tell you what I did when I found out I had an AVM when it decoded to show itself by bleeding, I was 48 at the time. This May will mark 10 years.
When I got home after the hospital stay and was recovering I had a lot of time to ponder, I differ from you in that I had three options, Gamma Knife, Craniotomy or no treatment. I decided I was going to make the best of every opportunity, every moment and while listening to my Dr. got busy doing all that I could. I was always active but straightened my diet up a little, started to exercise even more as I felt my fitness helped me in many ways, including my mental health. I also started to see a psychologist who helped me process the things that were running through my head. A couple of small things, but for me it allowed me to carry on and build strength and resilience. I had GK after 6months and them it was 27 months after that I learned the AVM was obliterated. I thought about it every day during that time, but was able to processes it and put it “back on the shelf”. The professional help allowed me to do that, most of the time. Other times I would just get on my bicycle and ride with my thoughts.
I am not that familiar with the experts in Europe, but have you sought an opinion from:
Prof. René Chapot, MD, is a world-renowned expert in endovascular neurointerventional techniques, serving as Head of Neuroradiology & Endovascular Therapy at Alfried Krupp Krankenhaus in Essen, Germany.
Many of our family here speak very highly of him. Please know our whole community is here for you, John
Thank you John,
I ve aleardy contacted him
I don t know if he will be good for me since in the past he didn t saw on the mri that something is off
I just know my days are counted
I don t know how to accept it
This warmed my soul a little. Thank you John.
@Amareea , I’ll have to agree here with John. I think we can all relate to the fact that getting any not ideal news can be devastating at first, and our brains will always try to find a reason why something happened. The reality is, sometimes the genetic lottery is not in our favour, and sometimes, random stuff happens to the best of us. As John says, there are at least a few people here that have untreated AVMs, and they all live full lives. Being able to put this “back on the shelf” is detrimental, because a calm nervous system will for sure improve your life in general.
I think it’s important to note, that, based on what you described here … “nothing can be done, NOW”. This doesn’t mean that nothing can be done in a few months or years, OR maybe you just need to find the doctor that can think of a solution. Don’t lose hope. Your AVMs haven’t caused any problems yet, have they? This was more or less an incidental find? (at least this is what I remember from our conversations?). With the risk of sounding maybe a bit insensitive, are you in any immediate danger, or is your anxiety running the show? It is so important to remain balanced and kind, and realise that we are more than our illness and there’s still a life out there worth living. During difficult times, it’s a lot harder, in my opinion, to cope with the anxiety and fear, than it is to cope with any illness we might have. So while you keep searching for a solution for your AVM, I will double down on John’s suggestion to seek psychological counselling too, because it can help a lot during these times.
Best, Mihai