| The following chat transcript courtesy of obgyn.net
now Medispecialty.com
Prior Chat Transcripts
Prevention of Post-Surgical Adhesions
David Wiseman, PhD
Wednesday, April 12, 2000
Drwiseman "Hi - a little early for a change."
A_parker "I have had about 8 surgeries since
1987."
Drwiseman "Well, what can I help you with?"
A_parker "I was wondering, are adhesions genetic?
My sister seems to have them also."
Drwiseman "We don't know whether they are genetic
or not - I hope, through the IAS, to do a study that
will find out of this is so. If you haven't signed
up for the IAS, please do so."
Tpnut "I had my surgery a month ago. They found
lots of them, what do they mean?"
Tpnut "And the pain is back."
A_parker "I have signed up. I will look forward
to the study."
Drwiseman "What else? Have I spoken to any of
you before?"
Tpnut "I am new."
A_parker "I was here a few months ago."
A_parker "And we chatted."
Booge "I'm so glad that Dr. Wiseman understands
adhesions. Some doctors tell you to live with the pain."
Shirlmae "Hello--new to this chat room--just
going in for surgery for adhesions, again, and wondering
about test data on toxic shock from Interceed or Seprafilm."
A_parker "The key word being "again"...
that is what makes me crazy... so many surgeries..
so little relief."
Tpnut "I feel your pain."
A_parker "I haven't heard about toxic shock from
Interceed."
A_parker "Have you read something about that?"
Tpnut "I want to understand everything that is
happening to me. Have some kind of understanding."
Shirlmae "My surgeon had two bad experiences
with toxic shock from Seprafilm in one week, even though
the adhesiolysis was relatively simple, and as a result
he will not use it any more."
A_parker "Gosh Tpnut, that is all our dreams
to understand why these adhesions keep coming back."
Booge "Yes, I would like to know about toxic
shock from Interceed."
A_parker "I wish I could answer that for you."
Shirlmae "One explanation that I read about was
that the body rejects the foreign material, even though
there is no infection."
A_parker "I have had Interceed before...I didn't
have a problem with it.. it just didn't help me."
A_parker "From forming more adhesions."
Shirlmae "Yes, I read a transcript lately where
some docs, including Dr Wiseman, were appearing at
a FDA panel regarding gel. I believe the consensus
of the panel was to turn that down also; sort of discouraging."
Booge "I have had 6 surgeries, the last one in
September, and they used Interceed."
A_parker "And if there is any side effects from
it, as in toxic shock."
Drwiseman "Interceed - toxic shock - I don't
believe that there are any data on this. A few people
have claimed they have fever associated with the Interceed
but the incidence is so low it is hard to associate
it with the Interceed."
A_parker "My only experience with it was it didn't
work. I still got adhesions back."
Shirlmae "I am curious; I called NIH and asked
whether they sponsored medical research on various
protocols for adhesion treatment and the answer was "no".
Now, why not?"
Tpnut "How fast can they come back?"
Drwiseman "The safety record for Interceed is
remarkably good - of course it should not be use in
cases where there is a known infection or contamination."
A_parker "Well, for myself they come back in
less than a year."
Booge "Mine too."
A_parker "Right now it has been 2 years since
my last surgery... and I am just living with it."
Tpnut "That's what happen to me. Can they come
back thicker?"
Shirlmae "Has any one had experience with use
of anti-inflammatory treatment, or use of aspirin,
after surgery as a minimizer for reformation of adhesions?"
Drwiseman "I don't know why not - most of the
clinical research is being done by companies. I hope
to be able to apply for a grant to study the members
of the IAS because this is perhaps the most interesting
population that will give us useful data about how
to deal with adhesions."
A_parker "I have discovered eating a big meal
aggravates it... so I just eat little meals."
Shirlmae "If you apply for a grant, could the
users of this chat room somehow endorse your study?"
Drwiseman "Another Q: how quickly do they come
back? They can come back VERY quickly - within a few
weeks (actually they form right away) but you might
not know about it until 2 weeks or so."
Drwiseman "How do you mean endorse? The IAS people
will probably be the subjects. Of course you can also
sponsor our work financially - which is our biggest
challenge right now."
Tpnut "I had my laparoscopy March 10th. I am
still in pain, can that be part of the problem?"
A_parker "There was one school of thought to
do a surgery and then 4 weeks later go back in and
cut down the adhesions that had formed and that might
help, but sounds like a vicious circle to me."
Shirlmae "What I meant by endorsement is to convince
the money crowd that there is a large population of
sufferers out there who need help, and thus there should
be a payoff in this sort of research."
Drwiseman "Anti-inflammatories - some work was
done with single doses of ibuprofen and tolmetin and
they did not find much benefit. My feeling is based
on animal studies that these things may work if given
chronically and starting before surgery - this will
also apply to steroids - although there is some evidence
in humans that if steroids are given beforehand then
adhesions will be reduced."
Drwiseman "The early second look story has some
good points - the main thing is that very early (less
than 2 week) the adhesions are likely to be easier
to cut."
Booge "But don't steroids make you gain weight?"
A_parker "But I wonder if insurance companies
will pay for two surgeries in that length of time."
A_parker "I have to fight now for just one surgery
for the pain."
Drwiseman "They can come back thicker. Some people
have reported only temporary relief from pain and then
it recurs - sometimes 2 weeks later sometimes 2 years
later. Of course the earlier may mean that adhesions
were not entirely the cause of the problem."
Tpnut "That makes sense."
A_parker "After my sisters hyst, she was in the
ER screaming her head off in pain just 6 weeks after.
They opened her up and lo and behold... tons of adhesions!"
A_parker "Yes, I read a transcript lately where
some docs, including Dr Wiseman, were appearing at
a FDA panel regarding gel; I believe the consensus
of the panel was to turn that down also - sort of discouraging."
Anette1 "Dr Wiseman, I have the curse, adhesions,
fibromyalgia, and chronic pelvic pain."
Tpnut "I have a doctors appointment tomorrow.
What types of questions should I ask about adhesions?"
A_parker "That is sad Annette.. we know how you
feel."
A_parker "I guess the first question I would
ask the doctor is "do you believe in adhesions
and the pain they can cause?""
Drwiseman "The FDA panel - actually there were
two different FDA meetings - one was on INTERGEL. I
was not part of that panel but attended the meeting
as an observer. The panel recommended that INTERGEL
not be approved. Pretty sad since the company has some
good data but made some huge mistakes about how it
was presented. There was another meeting that I attended
and spoke at, which discussed adhesion barriers in
general."
Anette1 "Today I talked to chronic pelvic pain
clinic in Alabama. They have good things to say about
Dr Wiseman."
A_parker "Because there are many out there that
don't put much faith in adhesions and the pain it causes."
Drwiseman "Do I believe that adhesions cause
pain? Some do. Not all adhesions cause pain and not
all pain is caused by adhesions."
Anette1 "I believe that the pain from my adhesions
caused the fibromyalgia."
A_parker "My adhesions are always in the same
place in my body. Does that mean anything? Always on
the right side.. never on the left."
Shirlmae "I read both of the transcripts of those
two meetings and they were quite interesting. I did
not know how the FDA went about making decisions; it
seemed to be by consensus."
Drwiseman "fibromyalgia - I'm not sure that adhesions
cause fibromyalgia. They may evoke symptoms similar
to fibromyalgia."
Tpnut "What about endo?"
Drwiseman "Adhesions in same place - is this
where you are having surgery?"
Tpnut "Yes."
Anette1 "The chronic pain can cause other muscles
to react."
Tpnut "They found lots of it."
A_parker "Well it is pelvic surgery.. laparoscopes..
and the mass of adhesions were always on the right
side, sticking to bowel and making a big mass."
Anette1 "I started out with endometriosis, then
adhesions, then fibromyalgia."
Drwiseman "FDA consensus - remember this is an
expert panel which votes - their decision is not final
on FDA - certainly in the Intergel meeting the conclusion
were by vote. In the other meeting it was to discuss
a Guidance document and so there the method used was
consensus."
Tpnut "Same here."
Anette1 "Now doctors won't operate until another
bowel obstruction."
Drwiseman "The adhesions are in the same place
because they are merely reforming. Thankfully for you
there is no reason for them to form in other places."
A_parker "Also started with endometriosis...seems
to be a common thread there."
Tpnut "They found some in my rib cage too, some
type of infection long time ago."
Drwiseman "Infection will do it also."
Drwiseman "Many doctors will not operate until
an obstruction."
Shirlmae "I have a friend at a laboratory in
Germany that is working on non-invasive techniques;
they have not focused on adhesions yet, but is it not
obvious that we are all in a catch-22 situation until
someone perfects non-invasive treatment?"
Drwiseman "There are no good non-invasive methods."
Booge "Dr. have you heard of anyone that has
gotten disability for adhesions?"
Anette1 "Also had a barrier and had pain return
in 3 weeks."
Drwiseman "Yes - you should contact me afterwards
and I will refer you to someone who is working on that
- it is a sticky situation."
A_parker "So what is there to do? I know my family
gets tired of me "complaining", so when I
talk about it, even here, I feel like I am just whining,
and I should just grin and bear it so to speak."
Shirlmae "In terms of operate or not, my surgeon
was of the view that a bowel obstruction every couple
of years did not merit further lysis. Only until I
had two episodes in 8 months did he agree to cut."
Anette1 "A_parker, I feel the same way, on a
dead-end street."
Booge "OK thanks."
Tpnut "I feel the same way."
Anette1 "I've been turned down too for disability."
Drwiseman "Endo is a common reason why people
have adhesions."
Booge "Why Anette?"
Tpnut "We are her for you."
Drwiseman "These feelings are very typical. You
don't want to burden your family - they may think you
are making it up and the doctors won't operate - even
if they do, there is a good chance they will come back."
Anette1 "Say that I can still do work, I can't
hardly keep up with the house."
Drwiseman "The important thing to know is that
you are not alone - as you can see by the good chat
we have here tonight."
Tpnut "Sometime you feel up against a wall."
Anette1 "That's for sure, Tpnut."
Booge "And the feeling of depression."
Anette1 "Definitely a feeling of loss."
Tpnut "Well, even you get tried of repeating
yourself and you want things to get better, so you
tend to shut down."
Shirlmae "What is the latest scoop on Dextran--are
surgeons still using it after surgery, and does it
help?"
A_parker "it is frustrating...................
for sure."
Anette1 "What is Dextran, Shirlmae?"
Drwiseman "Dextran - very few people use it -
it has limited value and there were some side effects."
Shirlmae "Beats me, my doc mentioned it in his
report, not sure. Sounds like a sugar additive. I did
not ask."
Tpnut "ls it like lupron?"
Anette1 "Dr Wiseman, so is the answer to all
of this, just wait until obstruction occurs?"
Drwiseman "It is a product called Hyskon. It
is a type of sugar complex which is poured into the
belly at the end of surgery."
Shirlmae "Talk about desperation. When the gastroenterologist
was trying to explain what's happening I asked why
standing on my head would not dislodge the sticking
or adhering. Really never got an answer, and never
tried it. Like I said, desperate."
Anette1 "Shirlmae, hubby suggested same thing."
Drwiseman "No, there are some doctors who will
operate for pain. I would ask your doctor to consider
putting you on steroids beforehand, using a humidified
and warmed gas supply for laparoscopy, and use an adhesion
barrier (of course I am not an MD and your doctor must
decide if this is going to be good for you)."
A_parker "I couldn't stand on my head if I had
too.. :)"
Drwiseman "Of course you should check out some "alternative" things.
Some people have tried massage therapy and MSM (something
form the health food store) but there are no definitive
studies on this."
Anette1 "Am in search of a doctor now. Mine threw
up his hands and gave up."
Tpnut "What?????"
A_parker "Well that is something new to me..."humidified
and warmed gas supply for laparoscopy"."
Tpnut "Where do you live, Anette?"
Anette1 "In Wisconsin."
A_parker "I had a doctor get mad at me because
he put the trocar in my bladder. It was so pulled out
of whack - said he would NEVER operate on me again
for adhesions."
Drwiseman "Gas - usually the gas that is pumped
in is at room temp and not body temp - it is a bit
like the wind chill effect."
Carey "Dr, when would you have surgery if in
the same position? When you developed an obstruction
or for pain? How much pain is enough to warrant surgery?"
Tpnut "Oh my God!!"
Shirlmae "What are the possible side effects
from Dextran?"
A_parker "Well, I will remember that Dr Wiseman.
That is a wonderful suggestion about the gas."
Drwiseman "If it were me, I would want to have
the pain removed as quickly as possible - even relief
for a few months might be OK, but the flip side is
the danger of increasing adhesions. But again, if it
were me, I would try it at least once throwing everything
I had at them."
Drwiseman "Warm gas, steroids, adhesion barriers,
laparoscopy, etc."
Anette1 "I have had 2 surgeries just for adhesions,
my belly looks like war zone."
Drwiseman "Plus a good surgeon."
Tpnut "I must live in denial, I can't believe
Drs. would do that."
A_parker "I have told many a doctor that I understand
that it probably won't cure it, but the pain relief
even for just a while is worth another surgery."
Drwiseman "I cannot begin to imagine the pain
that some of you are in."
Tpnut "Trust me! It's bad!"
Carey "How do you find a doctor who is good at
adhesions? I tried our local referral. They didn't
know specifics about doctors."
Tpnut "We feel like no one is listening."
A_parker "Oh it was really kinda funny, his face
was all red, he was mad. I told him I had bad adhesions,
I just don't think he believed me. And then when he
messed up, somehow it was my fault. Needless to say,
I haven't been back to him."
Drwiseman "Email me with your town - I may be
able to suggest someone."
Booge "I can tell mine are back because pain
in side and my left leg goes to sleep."
Tpnut "I have had that happen to me."
Tpnut "I can't sleep."
Carey "Thank you Dr."
Anette1 "I get the worst ripping pain and stabbers
ever and a terrible backache."
A_parker "Dr. Wiseman, for me it is like that
cramp you get in your side when you run too hard and
it doubles you over. That is what it feels like to
me."
Drwiseman "Let me be clear - even the most skilled
surgeons will have adhesions come back - the trick
is to get someone who will work with you."
Drwiseman "No one is listening - that is why
we are here."
Tpnut "Dr. I live in Austin, Tx."
Anette1 "Even the Mayo Clinic is at a loss."
Tpnut "Do you know of anyone here?"
A_parker "But the pain is mostly all the time."
Drwiseman "AuUstin - email me later - I will
respond tomorrow. david.wiseman@adhesions.org"
Tpnut "A-parker, poor thing."
A_parker "Thanks. I do appreciate the sympathy
and the empathy you all have."
Anette1 "Is it ok if I email you too, Dr Wiseman?"
Carey "I had a c-section 14 yrs ago. Not many
symptoms until 1&1/2 yrs. Hope if I have surgery
the adhesions would stay away at least another 14!"
A_parker "Wouldn't that be wonderful Carey..
:)"
Anette1 "Been 2 years since my last surgery."
Anette1 "Have had pain and symptoms from 3 weeks
after."
Tpnut "Dr, why do they not have more groups like
this all the time? It seems that so much has to be
said and learned."
Carey "I was willing to go through surgery until
I found you, my stuck together buddies! Now I am scared!
C-section and 1 lap is all I have had!"
A_parker "When I find a doctor that is resisting,
I just tell him "hey if you take me as a patient,
you can count on a new car every few years, just from
me and my annual surgeries"... :)"
Anette1 "That's funny, A_parker."
Booge "lol"
A_parker "Oh Carey, it is different for all of
us. Maybe you will do great. We want that for you."
A_parker "Well I figure you have to make them
laugh, if you can. Better to laugh than to cry... all
the time."
Tpnut "LOL"
Drwiseman "Why no more groups? Well this is THE
place to come - but we need YOUR involvement to make
this work. We are setting up chapters around the country
to bring people together with this problem. We also
need financial support to make this thing work for
everyone - education programs and awareness initiatives
to get doctors used to speaking about adhesions and
dealing with them."
Drwiseman "Well the hour has whizzed by - has
anyone any last questions before we sign off?"
Tpnut "Well how do we start?"
A_parker "No. But thanks all for listening tonight."
Booge "In the email it said that you're going
to hire someone?"
Anette1 "We all appreciate the things you are
doing Dr, thank you!!!"
Tpnut "Yes thank you."
Drwiseman "Hire someone - yes, but we need funds
to do this."
Drwiseman "How do we start - email me tomorrow
and let me know what you can do."
Carey "Thanks!"
Drwiseman "If there are no other questions -
this has been a good chat. I'm glad you got something
out of it."
Drwiseman "Signing off......."
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