Thanks Carla

[Guest guest]

Thanks so much for posting this. I think this was important to post.

It does feel like some of the e-mails are attacks or trying to sway

someone's decision. I am sure that is not the intent, but e-mail is

without tone so it is difficult to determine sometimes.

Unfortunately, there are really awful things that can happen and it

is important to know those risks. However, there are good things as

well and wonderful success stories. I think it is important to keep

the balance when making decisions.

> ,

>

> I have absolutely no doubts whatsoever that you truly do have the

> support of every single woman on this list group. Including me. To

> the best of my knowledge, we ALL wish you well and hope for

tremendous

> success with your treatment choice.

>

> Critical discussion of the treatment options, clinical

investigators,

> information published or media stories produced are par for the norm

> on this support group and should NOT be confused with the concept

that

> contributing posters may/may not be " with you " or " against you " . As

> you know by now, I often find myself critically reviewing medical

> literature, clinical study protocols, media stories, etc. and my

goal

> is truly quite simple: to keep everyone on their toes and

doing " the

> right thing " on behalf of women with fibroids. Never have I posted

my

> perspectives on HIFUS with even the remote thought of personally

> attacking you for making that choice. Whether the treatment is

> hysterectomy, myomectomy, embolization, HIFUS, or WHATEVER, it is

> simply my directive to probe, probe, probe. And that often means

> peeling back the layers of some awfully ugly stuff in order to get

to

> the truth and figure out how to best impact change in the most

> positive direction that will benefit women for the long-term.

>

> To you and everyone on this board before you who sought out and

> received treatment, when negatives are highlighted that impact the

> choice you made, it may sometimes feel as though you need to take

some

> sort of defensive position of your treatment choice. We ALL feel

this

> way at some time though. I get asked about why I chose embolization

> all the time -- and whether or not I regret it now, based on my

> outcome and experience helping others. I also get asked about why I

> had a myomectomy instead of a hysterectomy " at my age " and find

myself

> defending that choice all the time. It truly just doesn't end once

> we've made a choice and then taken those steps toward treatment --

> there will always be those who ask questions, good or bad, and who

> have oppositive views of our chosen treatment choice, per se.

>

> In the end, individual choice based on appropriate informed consent

of

> all the current treatment options is truly the only thing that

> INDIVIDUALLY matters. Your choice is precisely that: YOUR choice.

>

> The part that makes your position, , particularly difficult with

> all of this is truly the simple fact that there are so few women who

> have undergone FUS in this nation at this time. Truly makes it hard

> for us to gain a solid understanding of how it may be

helping/hurting

> women who choose FUS when there are so few women to even share a few

> words about it online. I'm certain this must be adding to your own

> sense of isolation on choosing this option -- as well as the many

> other women who may also be currently finding themselves in lonely

> shoes with FUS. I wish there were a way to get more of these women

> online, as occurred with embolization not so very long ago....I'm

> quite certain that would make a world of difference to you .

I'm

> simply certain of it. Together, it would also make sense to me that

> sharing your collective experiences could very well help to shape

the

> future of HIFUS in a more positive direction.

>

> We ALL wish you well and send you support. Hang in there and please

> keep sharing your experience with us and please, please try to

> understand that no one is criticizing YOU for this choice -- we are

> simply doing what we've always done here on uterinefibroids --

> critical analysis which might enhance our ability to gain fully

> informed consent.

>

> Carla Dionne