Dear all,
When I first found this post, I felt a great relief - all the exchange of info and the positive outlook on this Board is wonderful, but it's also wonderful to acknowledge all our frustrations honestly.
I haven't read every entry in "A place to vent", but I want to add some historical perspective to the posts about doctors with unsympathetic attitudes and no particular recommendation. I'm definitely not trying to sugar coat everyone's experience, just point out that it used to be alot worse.
Although there are many, many egotistical doctors still out there, at least there are SOME who actually listen. (You may have to repeat yourself a gazillion times.) The attitude of the medical profession has changed alot in the last 40-50 years. There used to be very, very few doctors who weren't arrogant. Now there are many, or at least some. That's a big change to me, in my life time. I saw my mother suffer horribly, being constantly told that things were "in her head." I know it still happens alot - it happened to my husband with what was eventually diagnosed as MS. But now that our family doctor (a younger person without decades of experience) knows what MS 'looks like," she openly acknowledges that she learned alot. For me, there's a huge difference between my mother's lifetime of suffering, and the 6 months or so it took for Clyde's persistence to "educate" our family doctor. And my mother was a smart and very feisty woman, so it wasn't for lack of trying on her part. I tell these stories to my doctor so she'll know the vast difference between the 50s and 60s and now.
I know it's VERY difficult to be under the extreme stresses of AN symptoms AND having been told you have a tumor, and then having to decide yourself what option to take. But to me this is such a positive development in medicine historically, I sincerely think we should appreciate it. I am only at the beginning of my AN journey and i don't know if my GK procedure will help or hurt my situation, nor do I know if there's some fact I haven't uncovered in research that I will wish I knew in retrospect (as I know is the case with several AN Forum members). BUT it seems accurate to me that the choice of treatment for ANs is appropriately one that each of us has to make, no matter how hard it is. It's the doctors who say defniitely to us that "procedure x is the answer" that are speaking an untruth, unless of course one has a large or particularly invasive AN. Many of us have a choice, and many people have 'fought' the medical establishment over the decades to give us that choice. It makes it oh-so-much harder, but it's better to be able to take into consideration ALL of our personal factors in addition to the medical realities of our situation.
And, finally, the internet. What we would all do without this Forum? I'm not sure we'd be able to make an educated and personal decision. The internet allows us to talk to hundreds of other people we would not know otherwise. I find it difficult to wade through the posts, but I found the posts and the recommended links I needed to make my decision.
I'm sure several of you will say, "What the heck is this Pollyanna doing here?' I'm not a Pollyanna; I'm just saying it's so much better than it used to be. Both my mother and I have spent our lifetimes fighting the establishment, being dogged patient advocates for ourselves and loved one. It takes pushing, pushing, pushing. You have to see it as a contribution you're making to human progress, even as you suffer. It IS a contribution to human progress! In the 70s when I was involved with a meditation and wholistic health group, I would have NEVER thought that acupuncture would be so accepted by the 1990s. There's lots of racism still in the world, but it's better. There's alot more openness and acceptance of, for example, depression as a medical condition, not a moral one, but there's still alot of stereotypes that still need to be overcome.
Fight on!
End of rant ................ :-)
Dana
