My daughter has a avm in the brain stem and behind the brain stem.It was 5 or 6 centemeters. It has been embolized with 64 pellets and a glue filled balloon about 20 years ago. She wasn’t expected to live more than a year. She was 17 ish at the time. We were told there was nothing to be done. The doctors in NY said, no surgery and none of that new proton been stuff would help her.
We went against the doctors advice. I searched all over and found someone who would clip many feeder vessels, took 28 hours of surgery. Them we got the gamma knife. This was not done in many places at that time. That was 19
She went on with her life with a few deficites, no balance, double vision, but lived on her own very near her mom, (me) and dad. She had decided she wanted to live her life as she wanted and didn’t want to do any more with the avm. She lived on her own for all those years and chose not to be watch over by the doctors.
She visited everyone at the mall and did ceramics, and had many friends. She, of course had sadness, for her life wasn’t what she had hoped for but she went on as bravely and ever. She exercised vigerously at the local gym which I worried about greatly but I knew I had to let her do what she wanted.
Now we are into this for 20 years and she just had her 8th bleed. The vein that bled was the vein of galen in the brain stem. It’s the main drain vein. They say it’s so very enlarged and had a few aneurisms on it. But listen, It is now only 3 centemeters.
She will be striving to recover this last bleed, as usual, but until then she is back under mom’s wing. She was totally parallized and on the breathing machine for about 2 months and is now just beginning to walk after about 4 months. We are now looking for new fixes since the medical world has learned so much more.
My reason for posting this is that we have found that the very same thing that the doctors told us not to do, they are doing now. How times change when you can see the history. We need to find the best way to life our lives the best way we can till those doctors learn more. My daughter is a good example of that. She would have been long gone if we did what the first doctor told us.
Everyone has to make these decisions for themselves, even though the decider may be to very young to make these decisions. Now that she is older and is faced with this past bleed and has the aneurism in the brain stem she is wanting to try to get help again. Two reasons, the medical world has progressed allot over the last 20 years and she is more mature.
I have chosen to stand by my daughters decisions in life from the first day. I do believe that it’s my job to present as much info as I can to her so she can make the best decision for herself. I am getting the same thing I did 20 years ago, “There is nothing we can do for her”.
The moral of the story is, life your life as best as you can and make sure and wise decisions for yourself. You are the one who has to live with the results.
It’s been hard to watch my daughter, “almost” going white water rafting, riding a horse, and the worst was 12 years of hard exercise at the gym. That surely couldn’t have helped that avm. I will keep saying, this is what my daughter wanted to do and if it killed her while she was doing what she wanted that was her decision as an adult. Maybe her actions over all these years were good for they say is better off with her body being is such very good shape in her recovery.
I must say I am very tearful reading all your stories and telling you about my daughter but it is very good for all of us also. Sharing is good. Barb