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AVM Survivors Network

Treatment outcomes. Deciding to go for it or not


#81

Like I said I have lots of deficits. I’m permanently disabled. My particular case was a CM in brain stem which was apparently still oozing blood all the way till surgery. It’s hard to say what was result of surgery and what I would have been like had I skipped. Best guess is that I wouldn’t have lived very long. Most likely would have been effectively decapitated. I don’t wish anyone my hardships but I now understand why it is not so black and white the choices and outcomes.


#82

This discussion is turned back on. Please be courteous to one another with a focus on offering friendly support to the original poster. Remember that it is our diversity of experience that provides the most help in someone making their own decisions. One heart.


#83

Well said Sir!


#84

Thank you Jeremy for your comments.
I receive constant prompt's to respond to discussions by email.
When I do I receive negative unfriendly replies from other members not the member I was replying to and interested in.
Bottom line with this site is that we all different, have different experiences, different opinions. And that is it, they are just opinions. Nobody on this site is medically qualified, so it will be a series of opinions based upon personal experiences.
I can't be bothered with sanctimonious members who only see one point of view and then have them criticise, without qualification.
I always try to offer "my way" of writing, with a little humour but with empathy.
Obviously this does not bear well with these sanctimonious members on this site, so therefore I will withdraw from this site and remove my details.


#85

I think that your experience of surviving an AVM with little or no deficits is off putting but very valuable. It is important to remember that there is always hope for a complete recovery. That it does happen. That the younger you are the more likely it is. But it is also important to realize that people’s passion’s are born from personal experience. Many here have suffered life changing experiences. Even loss. It’s hard sometimes but try to be mindful that everyone here has been touched by an AVM. Opinions like Stuart’s are needed as much as Lea’s if we are to offer people like Sophie a full wealth of knowledge to help them deal with their situations. In the future, please consider private discussion or moderator intervention. This is all we are here for. And to keep out con men and hustlers :wink:


#86

I agree, well said.


#87

Dear Bill,
I did not intend to castigate or lecture. There will always be contradictions, as i said, we were given three complete different courses of action. I am so glad we went on for a second and third opinion. The first group of doctors were wrong to want to operate and do ten embolizations. In the case of my loved one, the best choice was to leave the avm alone and not operate. I appreciate very much everyone's input but it is terrible to have to live with an avm and keep reading how it is a "walking time bomb" a "monster in your head". Think how that would feel if you knew you could not have treatment. The first group of doctors we consulted were so wrong. I had a dear friend who had avm surgery done by that group and she died after her surgery. Do you see now why I was emphatic? All I meant to say was get several opinions, go to teaching hospitals, don't just listen to the first doctor you see. About capitol letters, exclamations points, those are just part of writing the English language and certainly were not meant to offend anyone. We all need to support this young girl and I admire her so much for researching here and showing her appreciation to people who comment. I spoke with concern and love. I am so sorry I was misunderstood. All the best to each one of you who might read this.


#88

Thank you, Jeremy. I didn't intend to offend or confuse anyone. My deepest respect for Stuart.


#89

Hi Sophie I just wondered how U were doing now and If there’s been any updates? Sarah x