I just received a phone call from the doctor. It seems after seven years three since last treatment (4 embo’s and 2 radiations) my AVM does not want to oblierate. His feeling is that nothing more should be done and just watch it by having MRI done every six months. The nurse (since the doctor never talks directly to me) said he feels it is stable for now. I am not sure if they feel more treatments out ways the risk of just watching it or not because again the doctor seems to not want to talk with me directly. I am not sure I can afford another opinion I don’t think my insurance will cover it. I guess this is something my husband and I need to look into. I also have seen where treatment without the success of obliteration could increase the risk of a bleed. (need to do more research on this) I am so tired of fighting this thing! As I said in my previous post it may be time to just try and enjoy my life the best that I can.
Yeah you are right I could go through the rest of my life with now bleed which would be great the only thing is I was hoping to obliterate it and have some success in getting rid of the side effects from it. The doctors are not perfect. My husband feels I should go back to John Hopkins and have them review it and if they say the same then what will be will be. It hit me pretty hard yesterday after they called but I am doing a little better today. See you on FB.
Okay, first of all, it makes me mad that the doctor does not deliver that news himself and allow you the time to ask questions. It makes my blood boil, actually. That is such devastating news. I’m trying to imagine how I would feel hearing that about my son…
I wish I could understand better why sometimes the radiation works and sometimes it doesn’t? How can you radiate tissue and not have any reaction? But I know you are also not the first person to say this so you are not alone.
I agree with your husband- at least get another opinion and make your decision after that. It is so overwhelming to do that, I know, but you never want to look back and wish you had taken that one more step for your health and wellbeing. You are an important person to alot of people and I’m sure you would want to do the same if it was your husband or child going thru this. Treat yourself with the same importance and find the strength somewhere. My thoughts are with you Lee Anne and my heart is just breaking that you have been thru so much and then get news like this.
Hi Lee Ann I’m sorry you received just crappy news and from just a nurse. What a doc huh! I to a degree know how you feel. I have been dealing with my avm for 3 years and like yours mine doesn’t want to leave. It effects my everyday life and how i think and what i do and just like you i need to live my life as if this time bomb isn’t in there. But its easier said then done. Don’t give up hope some day you will hear those wonderful words “your avm is obliterated”. Your in my thoughts and prayers as always