re our meeting with Dr. Isaacson - long and part 1

[Guest guest]

Hello all, since feeling overwhelmed at trying to recap the meeting

we had (I am glad that Stacey and have already started this), I

thought I would write what I can now and add more later in another

post.

Dr. Isaacson seems to want to be able to have some better national

attention and standard of care for Asherman's. While he feels that

the " A " list is obviously helpful for us (the patients), he does seem

somewhat concerned that there is no official dialogue (among docs)

about what is best treatment and how to get regular ob/gyns to know

more re Asherman's and have a better sense of how to treat. He wants

there to be a Medical Advisory Board (of sorts) on Asherman's.

He said that he would like very much to be able to contact

other " A " list docs and other doctors he knows who are specialists in

this area and discuss things like studies re effective treatment, an

official " standard of care " for treatment etc, but that there needs

to be more patient driven organization. He has essentially asked

that our group (the Boston Asherman's Syndrome group) form a more

official group and that there be the possibility of other groups

forming around the US (and the world for that matter) that are able

to draw attention to our concerns (prevention, better diagnosis and

treatment, support etc). We have tentatively decided to call

ourselves(someone correct me if I get this wrong) the New England

Asherman's Syndrome Association (figuring that other groups that form

could call themselves something close to that -- and that this group

on line would be referred by us as the Asherman's Syndrome

Association -- since this is where all this wonderful stuff has

started and will continue.

We plan on meeting more often, each with a job to do -- something to

research and plan -- as we look at developing another (in addition to

Ashermans.org ) website to contain more local info and medical info

from Dr. Isaacson, a brochure (to be given to women after d & c's) and

finding out about getting nonprofit organization status. Dr.

Isaacson has given us the green light to get funds (from a donation

to his practice from a woman in TX who had some crazy amount of

unnecessary d & c''s -- and did not develop Asherman's by the way) in

order to fund these things, provided we are able to come up with this

more official organization status.

My hope would be that he would be able to talk with other docs in the

business (and drug/medical equip manufacturers) re getting funds for

other groups in other parts of the world to do the same things. How

wonderful would it be if a woman looking up Asherman's on line or at

a library would be deluged (not sure if I spelled that right) with

information and that there were groups all over. We do not plan on

doing anything in regards to on-line support since this site seems to

do it so incredibly well for all of us, but will continue to meet

monthly (in addition to the organizational meetings we will have to

get set up) for support in person.

Dr. Isaacson has always been very clear about his feelings that most

of the D & Cs that he has heard about have been medically necessary to

save someone's life -- mostly here he is talking about postpartum

bleeding d & c's (retained placenta, hemmorage (sp?), etc)-- he says

that it seems to be these women (myself included) that have

postpartum bleeding and infection that develop severe asherman's more

than others (miscarriage related d & c's ) (THIS IS NOT OFFICIAL, just

his experience). He feels very strongly that we NOT NOT NOT scare

women away from having D & C's which may be needed to save a life, but

that we educate women afterwards to get the correct care in case they

do start to develop scarring (this is what Stacey wrote about ). He

recommended a Post D & C visit - at 2 weeks post - with a office

hysteroscope - to see if scar tissue is forming and if so to break it

up.

He also feels strongly about the overuse (my word, not his) of the

blind d & c (am I getting this correct other women who were there?) and

feels so incredibly strongly about the use of the hysteroscope and/or

ultrasound to assist (unless a woman is bleeding heavily and then

blind is the only kind they can do). He said that if a regular

ob/gyn uses a office hysterscope 2 to 3 times a month, the machine

pays for itself. (this would be to diagnose and treat mild cases of

other things in addition to Asherman's). He said it would be

important that docs know their limitations and not treat severe

cases. He seemed HORRIFIED (again my interpretation) that there are

women that post on this site that have their Asherman's treated by a

d & c by doctor's who should know better !!!

Anyway, I better stop writing for now. For all I know, yahoo won't

let me post anything this long. I felt so so so incredibly fired up

after meeting with Dr. Isaacson. If he can have the opportunity to

talk with other doctors I can only imagine the good that will come

from it. It is so incredibly cool to also know what's going on with

the rest of us - and to convey that to him. He told a story about

Dr. Olive's wife (who is also a doc) coming to one of his office

hysteroscope trainings that he runs and he reported to us that Dr.

Olive was getting an office hysteroscope for his practice. We were

able to tell him that he hadn't yet gotten all the parts (thanks to

Roxie's story - unfortuately for her). He seemed kind of amused that

we all know stuff like that.

Again, I will think up/remember more stuff and as others who attended

remember to write their tidbits...well, hopefully we will all

continue to disseminate information and let the world know about

Asherman's. Take care all,