Re: My Surgery report
From: winged phantom (winged_phantom8@hotmail.com)
Thu Apr 24 17:14:48 2003
Sue, I'm so sorry I really upset you yesterday. It's because I feel
that so many women are being misled and even betrayed by their doctors.
If you read my "signature", I didn't think I really had any history of
anything that could cause adhesions, other than one or two small cysts
that went away quickly. I guess I have had some abdominal injuries,
too; once when I was swimming and swam over a buoy which "surfaced"
under me... I wanted to pass out! My pathology shows that I had old
scarred-in endo, which I was amazed to learn, because it had been
totally asymptomatic until after menopause!
And last Fall I gained 12 inches or so around my girth, without weight
gain: my guts are full of air, and they don't work real well anymore! I
always feel "full", even after a bowel prep (and my waistline doesn't
change then, either)! The laparo showed adhesions, and because I was not
sure if I really fit the criteria for ARD, I went ahead with the full
hysterectomy by laparotomy. I remember just a few fleeting moments
afterwards when I really felt "good".
Now you talk about a movement, and that is exactly what Helen and Dr.
Wiseman and the IAS are trying to do: educate the public AND especially
the doctors who are clueless about the pain and misery and wasted lives
that ARD sufferers have. Helen has posted ways to get your newspapers
or TV stations involved in educating the public, and you can do a search
for the articles she has posted. She also posted the address on the web
of an article on gynecologic pain:
http://author.emedicine.com/MED/topic3341.htm
It's one of the best articles I have read and even points out the source
of the pain going down past your groin and into your leg as being from
the retractors used in laparoscopic surgeries!
You mentioned the Cleveland Clinic and gave me a jolt. I have had the
medhelp icon on my desktop for months now, and it never dawned on me to
check it out for adhesions, but there are lots of hits there:
http://www.medhelp.org/home.htm
I think their server is down right at the moment, but they have a number
of message boards. If you do a search, you will get results from all of
them, I believe. BUT, the nifty thing is, this is run by the Cleveland
Clinic, and they have a doctor on staff who will respond to your on-line
questions! And believe it or not, they do not appear to be totally
swamped with requests, so I think you could get an answer within the
day. I guess the closest, most related board would be the
gastrointestinal board, although it seems that info on adhesions has
come up on several of the boards. ALSO, when I read the answer to one
of the questions, the doctor answering replied that ADHESIONS CAUSE
CHRONIC PAIN!!!!! Now that is not a blanket OK to go have surgery there;
just that they seem more in tune with what we all know than some other
jerks out there (you good doctors, I hope you know who you are... the
rest of you wouldn't recognize yourselves anyhow).
Right now I'm two weeks post-op for a three level diskectomy and fusion
in my neck (ACDF) with titanium plate and donor bone. My neurosurgeon
said I had a lot of scarring (adhesions-there's that term again!) on my
esophagus from my prior surgery in 1989. Very surprisingly, I don't
feel so bloated all the time! I don't know what happened! But I do know
I still have the early satiety and can't eat a whole plate of food
without feeling really uncomfortable, my guts are still sluggish, yada,
yada, yada... So I don't think I can wish away the adhesions I know
that must have re-formed after the hysterectomy.
And you know those suckers form real quick! They are there within 7
days! After that, they seem to just get tougher and more vascularized
and gristlier...
Well, I hope I have been able to at least be of some help to you, Sue. I
know you are truly suffering, and you are not alone. But relief is not
just around the corner, unfortunately. I think it was Karen who asked,
"What good is having a surgery that is covered by insurance if it leaves
you still in pain?" That's a very good point. but that is not to say
that the surgeries in Germany would not necessarily be covered by your
insurance plan; the best blanket response to that would just have to be,
"It depends."
Take care, and please check out the Medhelp site. Good luck.
wr
--
I have no history of abdom. surgery; have had a few cysts
Fall 2002- extreme pain and constant bloating
1/2/03- laparoscopy, hysteroscopy, and D&C
2/12/03- TAH/BSO for adhesions caused by non-symptomatic
endometriosis (only dx'ed on pathology report)
Now?- rigid belly; abdominal pain, tenderness and
bloating; plus continuing bowel problems likely caused
by new adhesions
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