Drwiseman "Hi everyone:
welcome back after such a long time!"
Klip "Hi Drwiseman."
Klip "I just
had my fourth laparoscopy for endo a week ago."
Drwiseman "Where
do you live?"
Drwiseman "Have
we met?"
Klip "It revealed
very extensive adhesions on my left side, binding together my left ovary, uterus, cul-de-sac, and bowel."
Klip "I live
in Wisconsin, and no, we haven't met."
Drwiseman "What
did they do about your adhesions?"
Drwiseman "Are
you in pain right now?"
Klip "My doctor
completely removed all of the adhesions, including the filmy ones on the right as well; and he put in Interceed
on the left side."
Drwiseman"Why
not on the left?"
Klip "He did
put it on the left, where things were really bad. The right side had filmy adhesions which he cut in a matter of
two minutes."
Drwiseman "I
see - what about the pain?"
Klip "He also
performed a uterine suspension. Before all of this was done, he first performed a microlap with pain mapping."
Klip "I am still
in pain a week post-op. It is so frustrating. He has me on Vicodin. I try to take as little as possible, but find
I still need it."
Drwiseman "That's
good - where did he localize the pain to?"
Klip "He said
that both ovaries were extremely sensitive, and the right one had hardly any adhesions. I told him, though, that
even if they showed pain to save them if at all possible."
Drwiseman "Has
the pain got better/worse?"
Klip "You see,
I want children really badly."
Klip "The pain
has gotten much better over the last week, but is probably worse than it was before the operation at this point."
Drwiseman "Understandable
- did he save both ovaries?"
Klip "I had lots
of problems with weeks of diarrhea and negative bowel workup that led me to surgery. Yes, he saved both ovaries."
Klip "And, my
diarrhea was immediately gone after the surgery. A barium enema I had a week before surgery had me crying out in
pain, so I figured the bowel had adhesions or endo."
Drwiseman "What
about endo - did he remove any endo - especially on the ovaries? Was there endo within any of the adhesions?"
Drwiseman "Good
- at least the surgery accomplished something!"
Klip "I'm not
sure. I have not had my post-op appt. yet, where he will have the pathology reports. The last time I had surgery,
a 3 cm fibrotic lesion with endo in it was removed from my cul-de-sac."
Klip "I saw my
surgery videotape, but as a layperson could not really see if there was endo or not, but the adhesions were sure
obvious!"
Drwiseman "So
what next? What does he suggest next?"
Klip "Yes, I
am glad the surgery accomplished something. Even though I have a very well renowned surgeon now, I am worried about
adhesion recurrence."
Drwiseman "I
guess they really have to decide where the endo was - if it was as extensive as you might think."
Klip "He has
suggested possible treatment with Lupron and add-back therapy, provided I had active endo, and provided my hematologist
gives it the OK."
Drwiseman "Adhesions
will probably recur although hopefully in a fewer number of places than before."
Klip "I have
Essential thrombocythemia as well, which is controlled by meds, but my platelets still have the potential to cause
clots or bleeding."
Klip "I am only
30, and do not look forward to always needing surgeries. Is there anything that I can be doing to prevent adhesion
formation?"
Drwiseman "I
wonder if that can make adhesions worse? It is fairly rare, I think."
Klip "Yes, ET
is very rare, especially in my age group. How could it make the adhesions worse? By post-op bleeding?"
Klip "I was off
of my aspirin therapy before surgery, and still am at this point because I am afraid of excessive bleeding during
healing."
Klip "My bleeding
time the day before surgery was 8 minutes."
Drwiseman "If
there is some bleeding - which inevitably there will be - I would GUESS that the number of platelets may cause
clotting to occur more rapidly and to form tough adhesions more rapidly - I don't know for sure but I would be
interested in the path report."
Klip "My platelet
count was 202,000 at the time of surgery, thanks to Anagrelide and Hydrea, which control my counts."
Klip "With ET,
abnormal clotting or bleeding can occur, but I tend to have clotting problems even at high normal platelet counts."
Klip "I get dizzy,
have headaches, tingling hand and foot, etc"
Drwiseman "Sorry
- wrong way round - the low platelet numbers will mean that there is more fibrin around and thus the possibility
of more extensive adhesions - especially in the cul de sac - I think you mentioned a large fibrotic lesion there
on a previous surgery."
Drwiseman "I
would still be interested in the path report."
Klip "Yes. Why
would there be more fibrin with a lower count? If that is the case, you would think it would be better to go thru
surgery with a high count, but then I run into other problems."
Klip "What sort
of things can be learned from the path report? I have a wonderful doctor, whom I am sure will answer any questions."
Drwiseman "With
a lower count it means that bleeding is prolonged - the longer the bleeding the more blood. The more blood - the
more fibrin."
Drwiseman "I
don't know - the pathologist may notice some differences in the adhesion tissue compared with non-ET patients?"
Klip "I wonder
what could be done to help me, then. I need the low counts, but then I don't want the bleeding...."
Drwiseman "What
do you think I can help you with - remember that I am not an MD."
Klip "I thought
you were an MD. I know you have a web site about adhesions, right?"
Drwiseman "I'm
not saying that this is the case - but it may be an additional factor."
Drwiseman "I
certainly do: http://www.obgyn.net/adhesions.asp"
Klip "What brought
about your interest in adhesions? Are you a researcher in the area of adhesions?"
Drwiseman "Yes
- I have been studying adhesions for nearly 13 years - I have been involved in the development of several anti-adhesion
products."
Klip "Is there
a good success rate with Interceed? Also, I was given antibiotics during surgery. I understand this can help prevent
adhesions by preventing post-op infections."
Drwiseman "I
have studied Interceed extensively - basically without it each organ has a 75% chance of reforming adhesions. With
Interceed - the rate is reduced to 50% - this assumes that the dr. was able to stop all the bleeding."
Drwiseman "Infection
should obviously be avoided - but it can also make adhesions worse - I assume that you were given them by iv or
orally?"
Klip "I wish
the success rate was better, but I'll take 50% over 75% chance any day."
Drwiseman "Yes,
we still have along way to go - to reduce lower than 50% - that's why we're still working on it."
Klip "I was given
IV antibiotics."
Drwiseman "I
am assuming that you have no signs of post-op infections."
Klip "As I said
before, I have a top surgeon, and I carefully watched the video of my surgery, and he carefully stopped the small
bleeders, and rechecked after flushing with fluid several times."
Klip "I have
no signs of a post op infection: no fever, and the incisions look good. I assume pain bad enough to need painkillers
is normal at this point in my recovery."
Drwiseman "Sounds
like he did a great job - even in the hands of the best surgeons, adhesions are inevitable."
Klip "I know,
that is what has me worried. My last surgeon is also one of the pioneers in laparoscopic surgery, and I still got
adhesions again."
Klip "I left
my last surgeon because he treated me like a disease, not a patient. I think he wants his success rates to look
good."
Drwiseman "I
would be interested to know who were your surgeons - you can email the details privately
david.wiseman@adhesions.org - or if you have other
questions."
Klip "He didn't
even care that I had diarrhea, and denied my endo could be causing it. He also refused to give me painkillers of
any kind, even non-narcotic ones that my haematologist would be safe to take with my platelet problem."
Drwiseman "That
doesn't sound so good."
Klip "I really
like my current surgeon. He is very personable, and treated me as a person with complex problems, and is working
with my other doctors."
Klip "I will
definitely E-mail you their names. I feel that a truly good surgeon is also a good doctor who cares about his patients,
as well as being surgically gifted."
Klip "I learned
about both of them through the Endometriosis Association. I like to keep up with my diseases, and be an involved,
educated patient."
Drwiseman "I
agree - I hope this has been helpful and I look forward to hearing from you. Is there anything else you would like
to ask before we log off"
Klip "Thank you
so much for all your help and advice. It has felt good to talk out this past week with someone."
Klip "I think
you have answered all of my questions. Thank you for your time, and good-bye."
Drwiseman "No
problem - in fact we have a support group in Wisconsin that I can put you in touch with - I think that may be very
useful."
Klip "When I
E-mail you, you can E-mail back the particulars."
Drwiseman "Logging
off - we'll continue by email - nice to chat with you."