Hi everyone. I’m very glad I found this site because no one I know has gone through any of this.
I had an AVM rupture back in September. Since then, I have had two embolizations, the last of which caused a stroke. After my last angiogram, my doctor told me radiation will still be needed since there are still some small areas that need to be treated. He also said further surgeries would not be an option because I would likely lose hearing in one ear.
I’ll be honest, I’m scared. I’m 32, and this is really the first major health issue I have had. No one I know has ever had to go through any of this. I am hoping someone who has already been through this can let me know what I’m in for.
Hugs to anyone else currently going through this. It’s so, so hard.
Hi. Welcome to AVM survivors! We do seem to have a number of people who are going through much the same thing: i.e. embolization followed by gamma knife. I hope some of them will find your story and say “Hi!” but do have a read around and I’m sure you’ll find some recent stories with people doing much the same.
It’s great to have you on board!
Richard
p.s. I don’t think the radiation hurts at all. There is a frame that you wear in order to target the radiation accurately (and you’ll probably be offered a local anaesthetic for where that is fixed). It is the frame that everyone describes as the least pleasant part of the whole thing.
Hello !I had a rupture also in September one month before I turn 31…
You’re certainly not alone…
I had my radiation treatment (cyberknife) in December,it didn’t hurt at all ,especially if you have done embolizations is really nothing compared to that.Stay positive you have gone through the worst of it!
I have had radiotherapy twice and although it sounds scary, it really is not. They use local anesthetic in the 4 areas they attach the frame so there is no pain involved at that stage and during the treatment itself there was no pain. After the removal of the frame I had a headache which was treated by a couple of paracetamols. I am currently waiting to see if they recommend a third session. If they do, I will probably have it.
Hi @GlueGal. Just to chime in and agree. Having been given gamma knife surgery 3 separate times, I can express its exhausting but really not that painful. They gave me a local anesthetic to fit the headframe. That was just a little prick on the side of my head. Then they screwed the frame onto my head. Again because of the local that really didn’t hurt. During gamma knife surgery they offered headphones to drown out the clanging of the machine. They communicated with me the whole time and offered music at various points. It really didn’t hurt it was just a long day. I’ll say I was in my 20s the first and second time. If you’re older, results may vary.
Hi. I had 3 rounds of radition. The radiation its did not hurt at all. Walk in the park. I had 2 of them 6 months apart and 1 a couple of years later. The fist one I had a head frame. That was some what uncomfortable. I was very nauseated. Until they took it off. It was like the pressure had been let off. I have never heard of anyone else having that issue. I was so relieved that I had the mask done the 2nd and 3rd time. I was like why didn’t they do that the time before? I have had 3 embolizations. Unfortunately it is still not gone. It was discovered in 2012. My option this time is to have surgery to get rid of it.
Thank you everyone for your replies. I feel a bit better, and it’s very nice hearing from people in similar situations. I’m sure you all know how exhausting everything has been.