Re: new to forum..
From: Bernie and Beverly Doucette (bnb@cybrzn.com)
Tue Feb 1 08:49:09 2000
Dear Janet,
I do not mean to scare you or anything else here, but somene has to tell you
what your leading into here with this surgery and surgeon.
How experienced is he in performing adhesiolysis surgery? How many of these
does he perform in a year? Have you spoken to any of his patients that have
had this surgery? what was the outcome for them? What is his procedure for
doing an adhesiolysis? Does he believe that the adhesions are the cause of
your pain and suffering? Those are but a very few things that you need to
ask him....
It is imparative that you learn as much as you can about your disease, ARD
adhesion related disease ) so that you can ask your surgeon questions
before you egree to this surgery! ARD will not kill you, you are not in
danger of any sort and even though one lives with pain and discomfort, you
have to give yourself a little time to figure out just why your having this
surgery and what will it offer you in the long run.
Do you even know the procedure the surgeon will use on you and if it sounds
effective for what your hoping for as an outcome? Has he discussed the
implications of what a surgery will do to you? What is your prognosis with
this surgery? What do YOU expect this surgery to do for you? What do you
think it CAN offer you? Reduced pain, no pain, a better future, how long
will you be well? Will the adhesions reform? Will Denovo adhesions form,
will you eventually end up worse then you are now? Do you know all the
answers to these questions yourself? Would you know to trust your surgeons
answered if you did ask him those quesyions?
You need to think about this a little bit! You need to educate yourself.
I am of the opinion that one never needs a resection just becuase you have
adhesions! that is very aggressive and it sounds to me as though the
surgerondoesn't have the experience to do a very good adhesiolysis. I would
have a lot of questions to ask before someone stated to cut up my
bowels...and if you think that is the end of it..it is only the begging!!
What happens when he has to keep removing bowel...even if it is becuase he
nicked the intestine during the suegery ( which is unfortunalty a common
concern with adhesiolysis and the reason you need a very experienced
surgeron!! )...do you keep losing bowel and organs until you end up with a
colostomy ?
Janet, you have a lot of thinking to do, and you have the opportunity to
become responsible and to take some control of your own medical care here!
I do not only mean education regarding ARD, but educating yourself to the
medical care providers, facilities and anyother person or treatment or thing
that you involve in your quest for getting yourself healed.
With ARD, one must be as aware of everything when it comes to letting
someone care for you. There is so little that is available for effective
treatment for ARD let alone meedical proffesional even wanting to deal with
it..and then you will always have those surgeron who will offer surgery
after surgery, take out organ after organ and all because they either don't
want to beleieve that adhesions can be the cause of a patients symptoms or
the know the real reasons and just want to make money...and yes, as
unfortunate as it is, many are like that!
Why do you think that so many women have lost organs, anbd regardless if an
appendix is viewed as a useless organ, when a surgeon does an adhesiolysis,
he will recieve more money for that surgery if he removes an organ. And they
know adhesions will return, so to leave an organ in or remnant of an organ,
simply means they will fill the pocket $$$ when they have to go back in to
lyse adhesions..as they know it will happen again, and again and
again.....and after they have pretty much screwed up the patient, they start
to ship her from DR. to DR and of course the Dr who doesn't want to deal
with an ARD patient will not be honest about the cause and will ship her
from Dr. to DR. until she finds one who will start to cut again!
All sad, but all to true!
That is why I stress education and communication and most
importantly...responsibility for ones own health care!!
Best of luck...and be wise, be cautious, and be smart...not scared!
In friendship
Beverly
>----- Original Message -----
From: Janet <rpaddles@aol.com>
To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net>
Sent: Tuesday, February 01, 2000 3:30 AM
Subject: Re: new to forum..
> At Mon, 31 Jan 2000, JF7770@aol.com wrote:
> >
> >Janet,
> >I am expecting to have my ninth surgery within the next two weeks and
scared
> >to death. On my last operative report the doctor noted the he thought I
> >needed a bowel resection but they were able to removed the adhesions and
it
> >opened up. I see where you mentioned you had had this done. Were they
able
> >to do it laparascopically or did they have to cut? Ginni
>
> Hi Ginni,
>
> well, when I had my bowel resection it was during my hysterectomy. They
> couldnt see any of my uterus/ovaries etc for scar tissue and one ovary
> was embedded in the bowel.When they did the horizontal incision for the
> hyst they immediately ruptured the bowel. Becasue they weren't
> expecting this it all happened in a bit of a rush so I actually had a
> horizontal and vertical incision for the op.
>
> Luckily that is a 'worst case senario' and I am pleased you have the
> time to look at your options. I agree with what you said about the
> laparotomy as I think things only got so bad inside me AFTER I had
> one.But they said there was no alternative as they couldnt see through
> adhesions on the previous lap.
>
> i think if you can have a lap to consider it but keep in mind that you
> dont want them to blindly rumage around as they could cause more damage
> and end up doing an emergency laparotomy. It might be better to have a
> controlled laparotomy from the outset.
>
> Unfortunately there are no easy decisions. Dispite having had my hyst
> and bowel resection over 18months ago I am now facing further surgery my
> self - either a lap or laparotomy - so I know how nervous you
> are.Sometimes it seems never ending...
>
> I hope it goes well for you, do let me know
>
> Janet
>
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