>----- Original Message -----
From: "Kim" <kimannperez@aol.com>
To: "Multiple recipients of list ADHESIONS"
<adhesions@mail.medispecialty.com>
Sent: Friday, May 23, 2003 8:05 AM
Subject: Re: My letter to a Senator to ask his assistance...A NEW APPROACH?
> Carolyn...what was done that you are now pain-free? how long have you
> been pain-free?
>
> At Thu, 22 May 2003, Carolyn J Meadows wrote:
> >
> >Dear Nancy,
> >I am sorry you are suffering so much, I have been there. I am now
adhesion
> >and pain free, so you see Nancy it is not an unsolvable problem, I
thought
> >that at one time too, when I felt so hopeless and helpless. Dr. Daniel
> >Kruschinski took care of that and now I am enjoying my life once again.
> >Wishing that you were pain and adhesion free too.
> >Love carolyn
> >
>> >>----- Original Message -----
> >From: "Nancy" <anonymous@msn.com>
> >To: "Multiple recipients of list ADHESIONS"
> ><adhesions@mail.medispecialty.com>
> >Sent: Thursday, May 22, 2003 7:18 PM
> >Subject: Re: My letter to a Senator to ask his assistance...A NEW
APPROACH?
> >
> >> Helen:
> >>
> >> I have been visiting this web site for the last few months and I have
> >> been comforted by the fact that there are others that suffer like I do.
> >> I've had five surgeries (the last was a total abdominal hysterectomy)
> >> and I know the adhesions are back. The symptoms are better than before
> >> the hysterectomy, but I know that I am not done with the adhesions or
> >> surgeries.
> >>
> >> So many of us are told that another surgery will help for a while, but
> >> will end up being futile because adhesions always reform. It is clear
> >> from reading this board that there are doctors in the world that
> >> recognize this condition and have worked to develop techniques and
> >> materials to treat it. I do not understand why the FDA is holding up
> >> approval on SprayGel and other adhesion prevention materials. I've
read
> >> that they cite an increased risk of infection. Well I can tell you
that
> >> I would take that risk. Infections can be treated with antibiotics,
> >> adhesions have no other treatment. If doctors are having good luck in
> >> other countries with SprayGel and other techniques, like the gasless
> >> laparoscopy, then why isn't the U.S. medical establishment grasping at
> >> these options? I suspect that no one knows the true scope of this
> >> disease. A lot of us have stumbled upon this site and read with great
> >> interest that we were not alone. Maybe a survey can be incorporated
> >> into this site that allows us to identify ourselves and our
afflictions.
> >> Doctors should also be surveyed. They see the symptoms every day.
They
> >> should call this disease what it is... ARD, not IBS or chronic
> >> abdominal pain. It should be clearly identified in medical school and
> >> it should be no mystery what causes the symptoms. If a patient
develops
> >> pain or bowel trouble shortly after a surgery, then a diagnosis of ARD
> >> should become the Gold Standard. Once we know who "we" are, we can
> >> submit petitions to our states. We can also put numbers to the disease
> >> and work for it to gain recognition throughout the government. The FDA
> >> should rush potential treatments through the approval process. It may
> >> take a while for a perfect treatment to be devised, but some of us will
> >> find at least some relief in the meantime. This has to be better than
> >> the current system. GI doctors don't recognize it because it is
outside
> >> of the digestive system. OB/GYN doctors help somewhat, but as the
> >> problem grows it leaves the scope of their expertise. I would imagine
> >> that they do not want to deal with GI issues.
> >>
> >> Conventional wisdom would tell us that we are exceptions-that there
> >> aren't enough sufferers to justify a specialty. Well, I don't believe
> >> that this is the case, but I cannot back my belief up with data. How
> >> many of us are there? Maybe it's time we tried to find out. We can
> >> start with the visitors to this web site. Maybe we can get some
women's
> >> magazines to publish a public service announcement directing other
> >> sufferers to this site. I know that I would willingly sign my name to
> >> that type of survey. It seems that this will be the only way to gain
> >> credibility.
> >>
> >> Thanks for letting me vent a little. It's hard to live with an
> >> unsolvable problme.
> >>
> >> Nancy, Michigan
> >>
> >> At Wed, 21 May 2003, Helen Dynda wrote:
> >> >
> >> >Dear Senator Sams,
> >> >My name is Helen Dynda; and I am seeking your assistance in
> >creating/preparing a state assembly petition for the state of Minnesota -
> >regarding the urgent need for increased awareness about Adhesions Related
> >Disorder (ARD).
> >> >
> >> >I am one of the founding members of the International Adhesions
Society
> >(IAS) - an Internet-based support and educational website for victims of
> >ARD. The Home page of the IAS is found at:(http://www.adhesions.org).
> >> >
> >> >I became the unsuspecting victim of ARD as the result of a laparotomy
in
> >1970. It wasn't until May 1997 - 27 years later - that I finally found a
> >doctor, who validated my pain!! He told me a diagnostic laparoscopy is
the
> >only way to know for sure if adhesions or endometriosis were the cause of
my
> >constant pain. I agreed to have a diagnostic laparoscopy; and on August
1,
> >1997 I learned for the very first time that adhesions had been the *real
> >cause* of my suffering!!
> >> >
> >> >When the surgeon performed my diagnostic laparoscopy, he was faced
with a
> >very complex surgical problem! He had to perform an adhesiolysis first -
> >before he could perform a diagnostic laparoscopy! Massive adhesions had
> >literally adhesed my omentum to my abdominal wall - involving an area of
> >about 7inches by 4 inches. These two surfaces were literally fused
> >together!! I had a very short reprieve from adhesion-caused pain;
because
> >on the tenth day after this surgery, the adhesions and the pain of
adhesions
> >returned!!
> >> >
> >> >The formation of adhesions is a completely natural/normal response by
the
> >human body. Adhesions result as the human body attempts to heal and
protect
> >itself following a surgery, trauma or infection.
> >> >
> >> >Since I had never heard of adhesions, I realized I needed to learn
more
> >about adhesions; so I checked our Mayo Clinic Family Health Book; but
> >adhesions was not even listed!! So in October 1997 we signed up to be on
> >the Internet. That's when I was determined to learn as much as I could
> >about adhesions.
> >> >
> >> >In June 1998 I entered my story at the Healthseek Forum - and in
October
> >1998 I was stunned to see my story on several of the Internet Search
> >Engines!! Since I didn't know how to have it removed, I decided to use
this
> >opportunity to tell the world about adhesions - and that's what literally
> >happened!! Since then I have received and responded to more than a
thousand
> >emails from adhesion-sufferer from the United States and many other
> >countries around the world!! ARD is not unique to the United States -
> >because it is a world-wide problem!!
> >> >
> >> >As a very active member of the IAS, I have made it my mission to
> >encourage victims of ARD to learn as much as they can about ARD. The IAS
> >Message Board is a testament to the problems that ARD causes. The IAS
> >Message Board is found at: (http://www.adhesions.org/forums/message.htm)
..
> >> >
> >> >As of today, May 21, 2003 the Adhesions Quilt represents 4,906 Years
of
> >suffering among 696 people (mostly women) before their adhesions
diagnosis.
> >This averages out to 7 years of suffering before these people are
correctly
> >diagnosed as having adhesions!! I hope you will take a look at the
stories
> >on the Adhesions Quilt is at:
> >(http://www.obgyn.net./cfm/adhesionsdisplay.cfm).
> >> >
> >> >For 27 years I had been mis-diagnosed by many, many doctors -
including
> >many doctors at the world-famed Mayo Clinic (5 times between 1970 and
1997).
> >For 27 years I had been labelled as being a "hypochondriac" - and treated
as
> >being mentally ill with "severe psychoneurosis". I actually saw these
> >diagnostic terms in my medical records from the Mayo Clinic.
> >> >
> >> >Since the only way to confirm the presence of adhesions is via a
> >diagnostic laparoscopy. I had never been offered this procedure before
the
> >diagnostic laparoscopy I had in August 1997!! Based on my experience,
this
> >helps to explain why I had been incorrectly diagnosed by so many
doctors!!
> >This also helps to explain how urgent it is for the state of Minnesota -
and
> >eventually the government of the United States - to create awareness
about
> >adhesion related disorder.
> >> >
> >> >I thank God for being there for me as I searched for a diagnosis I
could
> >believe and accept. I have shared a very brief account of my ARD
experience
> >with you. Unknown to the adhesion-sufferer - and I wasn't aware of
this -
> >is the fact that ARD also affects relationships!! In my case - my
husband
> >and four children have also been the unsuspecting victims of ARD. The
pain
> >of ARD prevented me from being the mother and partner I wanted to be.
> >Instead, I found my husband and children doing for me what I really
wanted
> >to be able to do myself - but was not able to.
> >> >
> >> >In May 2001 one of our IAS members, went to Washington, D.C. to meet
with
> >government officials from her state to ask for their help in doing what
they
> >could to create awareness of Adhesion Related Disorder. She was told
that
> >each state in the United States needs to create/draft a petition - a
> >petition that will be recognized as a legitimate state document - a
document
> >that can be submitted to the legislature of the state, where the
> >adhesion-sufferer resides.
> >> >
> >> >Adhesion-sufferers from Louisiana, New York and Wisconsin have already
> >accomplished this. You can view all three documents at
> >(http://www.adhesions.org/gov_recognition.htm).
> >> >
> >> >I was interviewed by a reporter for the article, "Painful Bonds",
which
> >appeared in the October 18, 2002 issue of the Echo Press (Alexandria,
MN).
> >As I had requested, the reporter kept the focus of her article on
adhesions
> >related disorder. To find this interview: Enter the following
> >website(http://www.adhesions.org/whatsnew.htm). Scroll down and click:
> >"Painful Bonds, an interview with ARD patient Helen Dynda".
> >> >
> >> >Currently, ARD is not recognized by managed care and government
insurance
> >as being either a disease or disorder; consequently, when surgeons
perform
> >very difficult, time-consuming and risky adhesiolysis procedures,
surgeons
> >are reimbursed by insurances at the lowest rate. Unless surgeons are
fairly
> >reimbursed for their work, it's the ARD patients who suffer the
> >consequences - the return of adhesions...with a vengeance...and increased
> >adhesion-related pain.
> >> >
> >> >Thank you for taking your valuable time to read my plea for your help
in
> >creating awareness about ARD. If you need more information, I have much
> >more information about ARD issues that I'm willing to discuss with you -
at
> >your convenience and at a place convenient for you. I look forward to
> >hearing from you. Thank you!!
> >> >
> >> >Sincerely Yours,
> >> >
> >> >--
> >> >Helen M. Dynda
> >> >
> >>
>