Re: Dateline - Feature on Chronic Pelvic Pain

From: Bernie and Beverly Doucette (bnb@cybrzn.com)
Mon Jul 3 16:33:22 2000


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 PM Subject: 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


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