I just did a search for you on here…http://www.avmsurvivors.org/main/search/search?q=Grade+4 Best wishes!
Thank you Barbara
Prayers to you❤️
Thank you and glad to see everything went well for your embolization. God bless
Hi John
You are on the right track to get as many opinions until you are comfortable with it. Listen to what the experts say, mull it over and eventually you will know when you have a decision. It doesn't have to be straight away, its when you know your ready.
Sending positive thoughts your way! My friend had gotten coiled at UCLA, they're a great facility.
Best wishes,
-Monica
I have a grade 5, un-ruptured, and opted to go the embolization route, it is concentrated in the motor area. The 1st embo was okay,I had moderate weakness and some loss of function in my left arm. The 2nd embo was worse, as I had weakness in my arm and leg ( hence I couldn't walk). The doctor suspended the planned 4 emos after that. The 2nd opinion doctor questioned whether intervention was even needed due the size and the fact that I was stable b4 the procedures began. I'm in my 4th month of rehab and still have not regained pre-procedure motor skills. I can self ambulate now, but I'm not sure when or if I'll regain my prior ability. All I can recommend is that you get several opinions before proceeding because large AVMs can be tricky ( which is what the 2nd opinion Dr. told me).
Good luck and God bless
Hey Rob I’m sorry to hear about what you went through and are still going. I pray your read helps you recover back to your prior self. Thank you for your advice. I keep hearing gamma knife is the best bet but of course there’s risks with that and I have no symptoms at the moment since I found it incidentally. It’s such a tough decision to make.
Hey Monica thank you. I was actually thinking of going there but Ive been hearing gamma knife is my best option. I’m still indecisive to what I will do.
Hi John,
I looked at your profile and wanted to add a couple things. My 2nd opinion was from Johns Hopkins and the neurosurgeon said two things that I often reflect on: 1) large AVMs are tricky, and 2) He said "Yes I can remove/neutralize it, but you're not going to be able to move the left side of your body afterwards". He also said it would take a large dose of radiation to treat it. There is a decent amount of research that suggest some AVMs should just be monitored. If you have not had any serious AVM problems,you may want to consider leaving it alone, with some type of regular monitoring schedule.
But this does not eliminate the risk! I have attached a couple of professional articles that offer support for monitoring. I am not a physician,and to my knowledge there is no consensus on this topic. I'm just trying to pass on information.
Dr. Robert Solomon at Columbia in NYC. Good Luck