Re: Adhesion-Related Disease ( ARD )......Posted again for Nancy
From: Helen Dynda (olddad66@runestone.net)
Wed Oct 4 00:17:29 2000
At Tue, 3 Oct 2000, NANCY wrote:
I have read your advice and I stongly will take that into consideration
as to my health care concern. I have now been a victim of chronic
stomach disorder which has been told to me that I have fms... don't
believe it at all. I know my body and I know that I have adhesions that
are obstructing my intestines. Doctor does not think so and says I have
had all necessary tests to prove it. I know how I feel and I know that
when I sit I feel pressure and I cannot wear a bra or panties without
feeling pressure in my stomach area. I am swollen all the time and feel
the urge to have a bowel movement but nothing is there. I cannot move
it unless it is manipulated into movement. This is not normal and
doctor seems to think I have irritable bowel syndrome and fms. He is
full of HMO as far as I am concerned. I have undergone surgery for gall
bladder and adhesions of lower abdominal...but nothing from belly button
up and that is where I feel the pressure. Please help. Thanks for your
article. I do not feel so alone anymore along with you and my paxil
that is. Thanks so much nancy
At Sun, 03 Sep 2000, Helen Dynda wrote:
Bev has recently given the following excellent advice: "Become your own
BEST doctor!!!"
Learn as much as you can about your adhesion-related disease (ARD)! You
will discover that the more knowledge you have about ARD the less you
will fear it; and BEST OF ALL, you will begin to learn how to make
better choices as to what your next step will be. This knowledge about
adhesions will eventually give you peace of mind; and you will find that
the time, which you spent learning about adhesions and adhesion related
concerns, will be worth its weight in gold. You will be empowered once
you know what the causes adhesions and/or endometrial implants (scar
tissue) are...and what you need to do. More importantly, you will begin
to understand that what you do about your adhesion problems will make
all the difference in the world to you!!
The most important fact you will learn is: Surgery after surgery IS NOT
the answer!!! Each surgery will cause even more adhesions to form; and
as a result you will begin to experience even more pain. Then at some
point your doctor may tell you: "Adhesions don't cause pain; you need to
have a mental health evaluation."..."There is nothing more I can do for
you...you are going to have to learn to live with it."..."You need to
get into pain management."..."I will not do another surgery for you
unless you have an emergency bowel obstruction."
Or maybe your doctor will say; "This is not within my specialty. You
will need to see a gastroenterologist (or whatever other
specialty)...which starts a pattern of you being juggled from one
medical specialty to another...without answers and without
success...which creates a real state of confusion for you. Eventually,
after seeing sooooo many doctors, you don't know what to do! Because by
now you have lost faith and trust in the medical profession. It is at
this point that you finally start thinking, "Maybe it is all in my head.
Maybe I do need to get a mental health evaluation."
At some point, before you have reached the actual stage where you are
questioning your own saniety, you will notice that you are having family
and relationship problems. People, who have been friends for many
years, eventually are no longer in your life. So many times you have
been told that all of your tests were normal or negative!! If you think
you are confused by this, it is quite possible that these people are
confused as well or they may no longer believe you either...that you are
really suffering severe chronic pain.
And if they don't believe you, how is your immediate family going to
believe you? You start to recognize that your relationships within your
immediate family has changed. Your spouse is drawn into doing tasks,
which you are unable to do; and as a result you no longer feel a special
intimate bond with your spouse. Your children? You eventually find them
doing for you, what you as their mother should be doing for them!! As a
result of not getting the right kind of help for the adhesions, which
are causing your chronic pain, your life has become very dysfunctional.
BUT you can either become consumed by this
dysfunctionality or you can make a decision to do something about it.
You do have a choice here!!
What choice do you have? Instead of wasting money and precious time by
having "surgery after surgery" with whatever surgeon happens to be
handy, you will learn that the most important step you can take is to
seek the *best adhesions specialist* you can find!!!!
Not every surgeon wants to do surgery for a patient, who has
adhesions!!! Not every surgeon has patience, which is soooo necessary!!
Not every surgeon has the skill and experience needed for adhesiolysis
procedures. WHY? Because adhesion surgeries are very difficult and
risky surgeries for the patient. Adhesion surgeries require great skill
on the part of the adhesion specialist; and probably most important of
all, adhesion surgeries require unlimited patience on the part of the
surgeon. I have actually viewed a video of a 10 hour adhesion surgery,
which which Dr. Harry Reich did for Deb in April 1999. In viewing her
video, it was absolutely impossible for me to see her individual
organs!! Her abdominal/pelvic cavity looked like someone had sprayed
Crazy Glue over ALL of her organs!!! One year later Deb is adhesion-free
and pain-free!!
What surgeon wants to spend 10 hours doing a surgery for the complex
situations that adhesions cause??? What insurance company wants to
reimburse a surgeon for a procedure, which can take as many as 10 hours
to complete??? What hospital wants to provide time in the operating room
for such a long surgical procedure...especially when we know that some
doctors don't even acknowledge that adhesions do cause pain??? How many
surgeons will agree to do surgery for a bowel obstruction...unless it
becomes an emergency situation??? It has been my experience that doctors
expect their adhesions patients to have an emergency bowel obstruction
before they will do surgery!!!
I previously said that you have a choice! That choice is yours alone to
make!! You are the one who is suffering!! I encourage you to seek help
from a surgeon, who specializes in helping people who have severe
adhesion problems!!
An adhesion specialist has had advanced training in laparoscopic
microsurgical techniques. He has logged thousands of hours in doing
laparoscopic surgical procedures!! Their experience has taught them what
techniques and skills are required by them in order to give their
patients the best possible chance to become as free from adhesions as
possible.
It is true, however, that NO surgeon can guarantee that their patient
will become completely adhesion-free!! But with an adhesion specialist
doing your surgery, you have the BEST POSSIBLE CHANCE to get your life
back !!!
Some of these adhesion specialists will suggest a second look
laparoscopy for a patient whose adhesions have been particularly
severe...as was true in Mary Pomroy's (Canada) case. This procedure is
done generally within 10 days of the surgery itself. This procedure is
an additional way that adhesion specialists are able to help their
adhesion patients.
This may seem like an expensive step to take; but when you add up all
the unsuccessful surgeries, which you already have had, you will find
the adhesion specialist to be a real bargain!! Think of all the pain you
have had to live with over the years as a result of all of the failed
surgeries you have gone through!! Think about how ARD is affecting your
relationships: your spouse's life, your children's lives, and most
importantly your own life!!
I am aware of several surgeons who qualify as adhesion specialists;
because they have been having success with the adhesion surgeries, which
they have done. Their location? California, western Pennsylvania,
Scranton, PA, and Duisburg, Germany. There may be other adhesion
specialists throughout the USA; but I have not heard about them yet.
Incidentally, as a result of having lived with the chronic pain of
adhesions for more than 30 years, what I have written is actually from
my own erperience!! I am planning to seek help from one of these
adhesion specialists; but I have not made a definite decision yet as to
whom it will be.
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