Bernie and Beverly Doucette wrote:
> Dear Anne and all: I have not only contacted Dateline more then once,
> I had also forwarded my own adhesiolysis video form DR. Reich, my
> medical history with my operative reports as evidence of my words and
> material, and received everything back with a letter stating they were
> not interested in this. I have also sent this same material to Dr.
> Nancy Snyderman of the " Good Morning America " segment, again,
> returned unopened! Not even a letter of explanation....yes, we hit
> Oprah, Jessie, all of them..and more..nothing!!Karla Nygran and myself
> have forwarded ARD information, medical histories and the associated
> substantiating medical reports everywhere, NO national TV station
> touched it...but here in our area, TV 26 IS doing a health series on
> ARD and has featured myself and Karla to date...they will feature Mary
> of Canada when she arrives in Wisconsin this week . Now, I realized
> that we needed to come from a different angle IF we were to get any
> mention of this disease out there...so Mary and I agreed to be used as
> a " personal interest " story, as that is what TV likes....human
> interest stories that touch lives and are uplifting, not sad, bleak or
> , "angry," per say! Do you realize the impact this disease would have
> not only on surgeons in America, but the health industry as we know it
> today??Once this disease gets public..it WILL change the medical
> industry as we know it...consider this: Insurance company rates would
> go sky high due to the fact there is no known cure and ARD is a
> disease requiring repetitive surgeries, unless you were sent to a
> surgeon skilled in that area..you know, all two of them in the USA!!!
> :-)An ARD sufferer would be subject to a pre - existing ailment clause
> unless they waited at least a year between adhesiolysis
> procedures...and the adhesiolysis procedure itself would have to be
> recognized for what it should be..a lengthily, tedious surgery with
> very few surgeons capable of performing it.and that would cost a
> pretty penny. The insurance companies sure don't want a person having
> not only more surgeries but surgeries causing more damage in each
> surgery that will increase the patients medical needs..and of course
> on and on and on, nothing WE haven't been living forever. Insurance
> companies do not want to" recognize " this disease for what it is, as
> they will have to change everything to accommodate it...and do you
> really think that once the insurance companies acknowledge ARD, the
> would be able to keep costs down when dealing with it? How do you deal
> with ARD effectively knowing what it really is..I mean, acknowledging
> that you know what it REALLY is all about, and don't think they don't
> know ARD now! Surgeons....this one I find funny, so my friends just
> when you start to feel angry at a past surgeon who screwed you up with
> making your ARD worse..think of this!! Once the public is made aware
> that this disease lurks in EVERY operating room in the world when an
> inter-abdominal procedure is being performed, how many potential "
> elective " surgical patients might pull out of their surgery for fear
> of ARD???If YOU had known what you know today regarding the etiology (
> start of ) Adhesion Related Disease, would YOU have agreed to any "
> elective " invasive surgical procedure? If that procedure was NOT
> elective, but extremely warranted, would you have asked questions
> regarding ARD prior to your pending surgery? What about a loved one
> who might " elect " a surgery now or in the future? What would you
> educate them about ARD? Or your loved one needing a surgery that is
> beyond their control, ..will you be right there asking the surgeon
> questions regarding ARD?? Say, for example, your daughter wanted a
> tubal legation, " elective " ...and she starts to ask questions about
> ARD to the surgeon, might he get a bit apprehensive? Or say, your
> daughter, or friend needed ( I mean really needed ) a hysterectomy,
> and she questions the surgeon about ARD..and stating that he had
> better do everything in his power NOT to subject her to ARD in that
> surgical procedure and she wants his guarantee on it...hmmm! Talk
> about anxiety... he would also have to be very skilled in his cleanup
> after surgery as he knows she is educated in ARD and he must
> produce..or else!! Talk about anxiety..and throw this in as well, have
> her mention that she will secure all pre and post operative reports
> and pathology reports to make sure ALL procedures were
> necessary!! Now, take just one hospital, your surgeon, on any given
> day and think about how many invasive surgeries he/she might be
> scheduling? Some warranted, some NOT warranted, but elective! After
> all, surgery is how they make their money..surgery!! Right?Now, in
> comes a prospective surgical patient, hysterectomy no less, BUT this
> time she has tons of questions regarding "ARD" as she talked to
> someone who sufferers with it and she is concerned about it..and she
> really has learned her stuff....what might that surgeon do?.... Phone
> a friend? Go 50/50? Or poll the audience? It cannot be " poll the
> audience " as there is no audience due to confidentiality laws
> regarding patient information..so that's out!! Keep in mind that if
> he doesn't deal with this effectively, HE will loss a surgery and that
> means he will lose $$$$!!! Not good for business!! I think he will
> do one of these four things: Number One: He could buffalo things and
> do the surgery and then just get rid of her if she presents with pain
> as he knows adhesion symptoms might not show up for a few weeks or
> months...and he would have time to make her think she was nutty..and
> why would he care once he had his payments!!Number two: He could re
> -think the necessity of the surgery and then advise her to get a
> second opinion as he may not be as qualified to perform this specific
> surgery DUE to the potential problem of adhesions, and he is VERY
> appreciative for he bringing that issue to his attention.....and then
> not take her back as a patient for this surgery and probably any other
> surgery as well!Number three: Tell her that there is no such thing as
> abdominal /pelvic adhesions and that you can find anything on the
> internet that you want to and then twist that information all kinds of
> ways or that HE has never performed a surgery that resulted in
> adhesion formation, thus she has nothing to worry about with him, (
> all the while hoping that she is not as smart as she appears and will
> buy that crap..and if she does, then he can always revert to number
> one once the surgery is through..after all, everyone has a " first
> time" you know!!! ) BUT, if she requests in writing that he will
> perform a clot evacuation following the procedure as well as the use
> of ringers solution in an attempt to thwart adhesion formation,
> ..well, that will be a whole nether thing...he will probably resort to
> number four.....Number Four: He might get angry, start to shout about
> patients not trusting their surgeons, patients thinking they know more
> then their doctors because they read stuff, and then they believe that
> stuff over the knowledge of the Dr. and they get angry...and then
> simply suggest that as long as you do not have trust in his practice,
> nor in his experience and qualifications you should go find a surgeon
> who you can trust as he is now deeply hurt by all these questions..so
> you leave feeling crappy and wondering if you should simply shut up,
> take the chance of having your life ruined and suffer pain the rest of
> your life...because he felt hurt that you wanted to discuss something
> important with him....( and once your out his door, he will be wiping
> his brow and saying to himself, " Man, that was a close call, glad I
> got rid of her because she knows to much!!! " ).. Why did I chose
> these four ways a surgeon might react to a patient who mentions that
> word, " adhesions?" Because I have personally witnessed all four
> reactions while advocating with ARD patients and their surgeons!!
> Want to share any of YOUR surgeon or Dr's reactions to that word when
> presented to them by you??? Anyone?? At the mention of ARD most
> surgeons will simply refer this " much to educated patient" on to
> another surgeon or refer them on to someone else simply because they
> know they have no way to control ARD from occurring...and they know
> all to well that 99% of all inter - abdominal surgeries will result in
> that " dirty " word..ADHESIONS!!Whoeww, I love to say that in front of
> a surgeon, it makes them shudder their whole face contorts!! Once I
> sneaked up behind a surgeon here at our local hospital and said real
> loud, " Adhesions " and he ran screaming down the hallway and out the
> door..never did return!! Hmmmm..( Well, maybe that's not true, but I
> sure like the picture of that happening!! ) Don't be dismayed though,
> my friends...as we ARE changing the face of medicine as practiced
> today regarding ARD....we are doing that right at this very moment if
> your reading this...EDUCATON & RESPONSIBILITY for ones self and loved
> ones are making the differenceand it will only grow as more and more
> people hear the aords. " Adhesion related Disease!! "..... Public
> awareness will make a difference....word of mouth will make a
> difference, for every three people you educate, one of them will
> encounter someone who has had surgery and sufferers the symptoms of
> ARD, or they will know someone who is facing an invasive surgery...and
> THEY WILL start talking about ARD!! We may not get national TV
> coverage, but we are making this disease known!! Two years ago there
> wasn't even anything on the web regarding ARD, in fact, it didn't even
> have that name...there WAS no medical term for our disease, only one
> simple medical term that wasn't discussed at all...and I now that for
> a fact as I went to nursing school and had NEVER heard of adhesions,
> let alone adhesions as a disease in and of itself! "Adhesion Related
> Disease " came about through the IAS folks and was and is being pushed
> down the throats of the medical society by all who us who use it in
> discussions!! Now, take just one hospital, your surgeon, on any given
> day and think about how many interabdominal surgeries he/she might be
> scheduling? Some warranted, some NOT warranted, but elective! After
> all, surgery is how they make their money..surgery!! Right? So, YOU
> start to spread the word about ARD, about YOUR disease, and you
> educate three people, just three people who really understand the
> total implications of what and why your suffering, and you scare them
> with the reality of ARD!! Do you think any or all of those three just
> might think twice about a surgery, elective or not, do you think you
> might have impacted their minds with the reality of how YOU got your
> ARD? I have NOT figured out how to tap into national syndicated
> TV..but I have figured out how to spread the word to everyone who will
> listen, I talk and talk and talk about it now, I write letters, karla
> writes letters, karla and I have made up a brochure on ARD and it will
> go to print once we have it all proofed and right...and we have even
> been hadning them out pre- printed, meaning simply printed off off
> this computor...we hand them out at health fairs, and any place else
> that we may find an audience!!! We write to talk show hosts, in fact "
> Dehlilah " read about Christina Buelteman's death from ARD on one of
> her syndicated radio shows... I am thinking that one day, we will find
> a way to tap into these talk shows...maybe to set up a meeting for all
> of us who have never met, and those have reached out to one another
> across miles and miles....success stories, human interest
> stories.....positive stories to be shared publically, nice cutsey
> ones, happy ones...and all the while..we are discussing what we all
> have in common..." Adhesion Related Disease!! "So, that is what I
> think..( Bev laughing here as she knows that by the grace of GOD one
>> day it will be known!!! ) ----- Original Message -----From: Anne
> Hayashi <mhaya0902@aol.com>To: Multiple recipients of list ADHESIONS
> <adhesions@mail.medispecialty.com>Sent: Sunday, July 02, 2000 11:34
> PMSubject: Dateline - Feature on Chronic Pelvic Pain > I have just
> finished watching DATELINE, and one of
> > the featured segments concerned a woman who suffered
> > chronic pelvic pain and the cause seemed to be related
> > to a buried varicose vein in the pelvis. It seems an
> > M.D. in Johns Hopkins is able to block some of the
> > culprit veins, and has brought about pain relief for
> > some women.
> > I was disturbed by the fact that Dr. Arnat(sp?)
> > listed other pelvic pain causative factors including
> > endo., but as usual, no mention of adhesions as a possible
> > problem. I would suggest that perhaps DATELINE needs
> > to hear from some of us. Research is based on monetary
> > return, and I am convinced the amount of money spent on barrier
> research
> > will be dependent on the perception that there is a huge need. If
> > varicose veins can get some
> > recognition, why is there such hesitancy to feature the
> > adhesion issue? Why is this issue always getting bypassed?
> > Is it because of the link to surgery? I wonder....
> > Anne H.
> >
> http://www.adhesions.org/forums/listcmds.htm