Re: My letter to a Senator to ask his assistance...A NEW APPROACH?

From: Kim (kimannperez@aol.com)
Fri May 23 08:03:52 2003


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
>> >
>>


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