Hello! As you can read by the title my name is Jonathan. I am a 16 (1/2) years old and I am living in Germany, so sorry for any mistakes! My whole “AVM story” started in december 2017 when I had an MRI because of my Migraine which got totally bad in this year. I had more and more migraine attacks. After the MRI a doctor told me that they found something they can not “clearly say what it was” but that things like those are good treateable. Of course he didn’t tell me what they found because he thought I might be scared and worried. With almost no informations I went back home and kept doing my stuff. After only a month I went to another doctor which told me that I have an AVM. He said that I am “not allowed” to do any sports for some time. That was really really hard as I played soccer for 9-10 years of my life and it was my greatest hobby! But I did as he said.
In May 2018 I had an angiogramm so that the AVM can be seen better. ( I also had 2 migraine attacks that day, one where I wasn’t able to talk anymore but that isn’t so important)
Again the doctors didn’t tell me really much… only that my AVM is between 3 and 5 cm big and that it is located in the center for movement and speaking (should be the left frontal lobe I think.) As I also wasn’t allowed to be part of PE in school I soon couldn’t handle that any longer and started to participate again. I am still not playing soccer to this day and probably won’t be able to do it in the rest of my life or atleast SHOULDN’T do it!
On Tuesday 2 weeks ago I was meeting my doctor again for the reviewing of my angiogram. I didn’t get any good news. I already knew my AVM was difficult to treat because my vessels are so small and there are soo many… so embolization would reach the healthy parts of my brain. Operation is not possible because my AVM is pretty much in the left middle of the brain. And Gamma knife is only possible for AVMs that are less than 3 cm big.
On that day he told me my AVM is ATLEAST 5 cm large/big if not even bigger. The blood flow is strong not extrem but also not weak. I have NO aneurysm.
They already told me that if I have a bleeding there a significant chance to be half side paralysed and I might lose my speech completely.
A group of specialists are now looking at my pictures and I will have 2 MRIs in may this year. One normal and one fMRI to see how much the AVM is affecting those areas of my brain. If the AVM is affecting my left frontal lobe “too much” there I will never be treated.
I am probably one of the youngest Member of AVMsurvivor but I still hope that you are honest to me and that you can maybe give me some advices.
I am a very good student. I am very concentrated and I can work fast and effective and that is one of my fears… I don’t want to lose this. I am extremely interested in natural sciences and no day goes by without me watching Videos about the greatest achievements of science or talking with my uncle about space and the big bang I love this!
What if I won’t be able to do that in the future anymore? I can’t imagine getting “bad” in school and not being able to come along with my classmates anymore.
One of my biggest fears is to be a “different” person after a bleeding or a treatment. Do you guys have experienced a change in your identity ? I honestly would rather die than becoming a different me.
And do you have any advices how to stay healthy in terms of AVMs? My blood pressure is totally normal.
Any messages are greatly appreciated thank you all!