I too walked it alone for over 20 years. I do not have to say anything more about my walk with ARD as Helen's words reflect my own story, and I will bet they reflect many, many others walk with ARD! Like Helen, my walk was long before ARD even had a name!
I hope that Sherry will educate herself to adhesion formation and the onset of symptoms, and why a second look procedure is imparative following an adhesiolysis! (Though you will not secure that here in the USA.) As long as adhesions are not present during a second look, they will not be able to tighten over time and create symptoms once again, so there IS valid reason and cause for celebration when a second look proves clean, so all who have had that experience there is cause to celebrate! Can adhesins form in these folks again? Not spontaniously if that second look was clean! Nope! Nope! Nope! Of course adhesions can form in persons with clean second look procedures, just as they can form in anyone, but it will be from a cause and affect,( injury, inflamation or sloppy surgery.) Unless the afore mentioned causes happen to them, for now, they have beat it...they really, realy have beatten it!
Maybe some will still have issues to deal with as a result of the years of living with adhesions, and too many unskilled surgeries, but over all, as long as they know the second look was "clean" they have a peace of mind many of us never had...and good for them! No..GREAT for them!
For those of us who have not had a second look procedure following an adhesiolysis, well, symptoms can surface years after that adhesiolysis that appeared to be succesful, but then again, if it offered a person time to enjoy life, maybe that CAN be called a success?! I try to put it out of my mind as adhesions are one thing I fear most entering my life again..even more then the thought of my ex-husband entering into it again, and THAT in itself is pretty scary!! Trust me on that!
What really scares me is when I read that someones adhesion symptoms resurfaced after four years or more..I have been free of 95% of adhesion pain for four years now..sometimes I want to walk away from the IAS and ARD issues so I don't have to face the reality of my case, but then again, if I don't try to change things in this area, when and IF they return, I have absolutely no hope! And I have a daughter who is going to have her first child (in 8 months, but non the less..mom is already hawking her medical intervention!!) Just in case...and with the % of ahdesion formation in ob/gyn cases, you can bet I stay involved in issues of ARD!!
Some victims of adhesions will be spared following an adhesiolysis with unskilled surgeons, but most will not. The fact of this matter is simple...if adhesions formed post operatively following an adhesiolysis, the victims will know it, sooner or later, and all the discussion in the world will not change that fact! The good news is that, for some, there are alternatives today. For some, it will be Germany, for others it will be Scranton, for others, they might get lucky with a local surgeon,(but I doubt it!) If MY ARD symptoms surfaced once again and things were as they are today in this world when it comes to dealing with adhesion symptoms, there is no doubt in my mind that I will find a way to secure an out of country adhesiolysis with a skilled surgeon who will perform a second look procedure and hopefully use Spraygel!
I did not have the priveldge of a second look, nor Spraygel, and todate I remain free of adhesion pain and symtoms, but I do live with non reversible chronic symptoms that have impacted the way I live life,but I can live life to a great degree, so todate, I do not see them as problems!
I am a realist, analytical in most ways, I am a pioneer too, but the honest reason that I have worked so diligently to pave the way for all victims of Adhesion Related Disorder (ARD) to have golden opportunuties, both here in the USA and abroad was as much for myself as for all..
For now, we HAVE made great strides in the arena of Adhesion Related Disorder! If your reading my comments here, then your reaping one of the benefits of the advances made in the ARD arena! We have many oportunities to secure education, awareness and information about ARD, unfortunately, it is ussualy the "victims" of adhesions who are already sufferring that seek this information! However, support and encouragement is available today, direction, suggestions, and as important if not the most important, these very things might serve to stop victims of ARD from being assaulted further by those who they might otherwise trust with thier lives! They trusted before and if they are researching information about adhesions, well...someone was not to lucky! If you listen now, you just might be spared further damages and indignities, you might learn to ask questions, stand up for yourselves, challenge your medical care providers, educate THEM and demand the best medical intervention available to you or your loved one, and hopefully you will not simply allow unskilled surgeons to perform an adhesolysis that you have not srutinized to the max, and if nothing else is accomplsihed at least stop them from performing them over and over again!
Most will not get to Germany, that is a fact, and for those who cannot get there, you can still be your own best Dr. by educating yourself to save yourself from further harm, to be able to demand medical intervention that will ( might) offer you some relief in your symtpoms and hopefully, one day every single victim of ARD will have the opportunity to secure the "golden" adhesiolysis, skilled surgeon,laporoscopically, an effective adhesion barrier and a second look procedure..and in your own respective countries!
This is what I continue to diligently fight for, and if I did not think it was realistic, I wouldn't be spending my time and money to get it accomplished, but I do believe in it, and I do see it becoming a reality! For now, lets all stand together, challenge each other to do what is right, though it may be different from what we might do in our case, support each other and respect that each ARD victim has thier own set of issues that dicate what and when they can or will be able to do what is best for them!
What is best for one victim of ARD, simply may not be best for another victim of ARD, or it simply might not be possible for another to pursue wehat we might think is the best route for effective intervention, be it for reasons of financial,emotional,psychological,physical or firmilial, for whatever reasons one has in doing thier own thing, we respect that..but we continue to share ALL thatwe know and have experienced, good or bad, as it is in those things that someone, somewhere and at sometime, WILL be helped! To long have there been to many SECRETS when it comes to adhesions, but no more, my God, NO MORE, not if WE can help it, and WE CAN!!
What we ALL can do today is know that we are no longer alone, and that our symptoms ARE REAL,our ahdesions ARE REAL, and let NO ONE, NOT NO ONE, tell you otherwise!
May all who are sufferring find some peace within that pain and may the words shared by those who are celebrating success, be our hope and future! For now, "Be Your Own Best Dr." and like Karen & others, NEVER SHUT YOUR MOUTHS ABOUT ADHESIONS AGIAN!
In friendship, Beverly Doucette
At Thu, 19 Jun 2003, Karen Steward wrote:
>
>Dear Helen,
>
> Thank you so much for the nice reply.......I honestly do not know how
>people manage this
>illness without an active family member or friend fighting for them. I am
>soooo sorry you
>have walked this lonely, painful path alone...........
>
> I am currently working on different projects to bring awareness to ARD nd
>the people
>suffering.
>
> Thanks for your encouraging letter!
>
>Hugs,
>
>Karen
>
>Original Message-------
>
>From: adhesions@adhesions.org
>Date: Thursday, June 19, 2003 12:59:57 PM
>To: Multiple recipients of list ADHESIONS
>Subject: Karen, I say "Amen" to what you have shared....
>
>Dear Karen,
>As I read your message about your ordeal in trying to find a doctor, who
>could/would help restore Melissa's health, I couldn't help but feel that you
>were writing about my ordeal too!!
>
>--
>
>My ordeal differs from yours and Melissa's only in that I did NOT have
>anyone to advocate in my behalf. I've had to trod that path alone for
>almost half of my life--ever since a laparotomy in February 1970 caused
>massive adhesions that attached my omentum to my abdominal wall - 33 yea s
>ago!!
>
>I was age 39 when my ARD story began; and, at age 72, I am still search ng
>for a resolution to my chronic pain. I'm not so sure that "Intertissual
>scarring from a laparotomy in 1970" is the cause of the chronic pain I
>endure each day.
>
>http://www.adhesions.org/forums/ADHESIONS.0208/0320.html
>
>When the time is right, I hope you and Melissa will want to arrange a
>meeting with the district senator or representative from your state - wi h
>the purpose being to seek his/her assistance in writing up a citation or
>resolution about ARD that will eventually be approved by the state of Te as.
>
>It is not my intention to downplay what you and Melissa have been throug .
>What you have shared, is information that needs to be heard and "shouted
>from the rooftops"!!
>
>I say "Amen" to everything you have shared - especially at the following
>website:
>
>http://www.adhesions.org/forums/ADHESIONS.0306/0205.html
>
>Thank you for sharing!!
>
>Love, Helen
>