How long have you been on it & are you eating with it??

As Always ~ Steph ~


---------------------------------
How low will we go? Check out Yahoo! Messenger’s low  PC-to-Phone call rates.

[Non-text portions of this message have been removed]

Hey all-
I am on Sulindac twice daily.  Occasionally I get the worst gut aches-
any advice on to relieve the pain?
Thanks in advance to help!
Amy in Mpls

Sorry I took so long to get back to you folks.  Sue, I'm glad to
hear your husband is doing good.  Hopefully the procedure they did
will take care of the problem or at least keep it to the point where
the same procedure can be done again if needed, avoiding surgery.

Shiela, it certainly sounds like your plate is more than full right
now.  I've got a similar problem where they were unable to remove
the tumor without risk of perforation.  Plus the Endoscopic
Ultrasound showed something 3-4mm in size behind the ampulla.
Surgery has been recommended.  A Whipple procedure is one choice.
However there is also what's called an Ampullectomy or wide
resection of the Ampulla Vater.

Here's what the USC (University of Southern Ca.) says on their
website about wide resection of the Ampulla Vater:  "This procedure
is offered to patients with ampullary polyps or other benign
disorders of the ampulla.  Patients usually present with
pancreatitis or jaundice.  The Whipple operation is usually offered
for these benign conditions.  We prefer local resection of the
ampulla vater for villous adenomas since the pancreas and duodenum
are preserved.  We widely remove the ampulla and then re-implant the
cut ends of the bile duct and the pancreatic duct into the Duodenum."

I like the sounds of this approach.  I'm concerned that sometimes a
Whipple procedure is done when a lesser procedure may have
sufficed.  Sort of like doing a heart transplant to fix a leaky
valve.  I'm going to continue to research this and may send my
records down to USC to get their evaluation on whether this
procedure is appropriate for me.  Also, the Dr. I consulted for a
second opinion told me that the Mayo Clinic in Rochester, Minnisota
has quite a lot of experience with individuals who have a history of
FAP who have also had villous adenomas.  I will be contacting them
as well.

I'm thinking that I may not have any surgery done until fall (not
exactly what the Dr.s are advising).  They are of the mind that now
that they know there's a problem it needs to be taken care of right
away.  They may be right, but I think I want to have the time to
carefully research this out and make an educated decision.

I'll post more as I learn more.  In the meantime good luck with
whatever you do.

Jim

--- In gardnerssyndrome@yahoogroups.com, "shlkndy" <shlkndy@...>
wrote:
>
> Thanks Sue. I asked about that. Have been told,that because it is
large
> & broadbased that to remove it endoscopically would run a high
risk of
> perforation, which if it happened would mean immediate surgery.
Which
> is something we are trying to avoid right now, in order for them
to get
> my desmoids under control. Saw one of my gastro guys today & he
said
> that down the road they may consider it. Right now they are going
to
> monitor things very closely & by doing that hopefully be able to
delay
> the whipple which I also need.Did your husbands removal go as
planned?
> And has it ever grown back etc? Thx, Sheila
>
> --- In gardnerssyndrome@yahoogroups.com, suewrenity <no_reply@>
> wrote:
> >
> > I just saw your post..my husband also had a large adenoma on
ampulla
> > area a few years ago,and had a papillectomy performed
> endoscopically.I
> > understand that not all docs do this,but it's less invasive than
> > surgery.Take care..
> >
>

I have "Clinical Depression" and PTSD so I know all about it too. I've been on
Zoloft now for at least 10 - 15 years.

As Always ~ Steph ~


---------------------------------
Blab-away for as little as 1¢/min. Make  PC-to-Phone Calls using Yahoo!
Messenger with Voice.

[Non-text portions of this message have been removed]

I know how you feel.  My niece has FAP and has refused all treatment.  She is
living the wild life and if she goes she is determined to go with a smile.  I
made sure all our bills have been paid off.  If for some reason my husband goes
I don't want my life to be over as well.  Seeing the doctor is about your
husband.  He has to want to live.  He just needs to tell you what he wants so,
you can get on with your life.  It is hard worrying about someone you love so
much. They have to understand that they are our lives also.  We love our
husbands and if we wanted to be alone we would move out today.

"Elra K. Gattermeir" <elphotos60913@...> wrote:   Thanks for the
encouragement. I'm a little more sensitive than usual
these days because my hubby has yet to set up an appointment for his
yearly tests. After his near-fatal episode this past September with
that desmoid tumor he's been shy of seeing doctors (as if that will
keep him alive).

Kathy

--- In gardnerssyndrome@yahoogroups.com, Adeli Ybarra
<ypchadeli@...> wrote:
>
> Kathy hang in there.  Don't be so hard on yourself.  We are not
always going to get along and we are not always going to agree.
That's what close relationships are all about.  We argue with our
husbands, mothers, fathers, and children.  But, we all still love
each-other.  Sometimes we just have to agree to disagree.
>
> "Elra K. Gattermeir" <elphotos60913@...> wrote:   I'm sorry I
brought this issue to anyone's attention. This is not the
> right place to discuss it. However, for anyone interested in why I
> did, Google "Neurontin lawsuit." It was never approved by the FDA
for
> anything other than epilesy.
>
> I'll keep my opinions to myself from now on, and, Breanne, I DO
> apologize for calling you "Lucy." It wasn't meant as an insult or
> anything as when I wrote that email I thought it was your first
name.
>
> Kathy
>
>
>
>
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "gardnerssyndrome" on the web.
>
>     To unsubscribe from this group, send an email to:
>  gardnerssyndrome-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> [Non-text portions of this message have been removed]
>






---------------------------------
   YAHOO! GROUPS LINKS


     Visit your group "gardnerssyndrome" on the web.

     To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





[Non-text portions of this message have been removed]

Thanks for the encouragement. I'm a little more sensitive than usual
these days because my hubby has yet to set up an appointment for his
yearly tests. After his near-fatal episode this past September with
that desmoid tumor he's been shy of seeing doctors (as if that will
keep him alive).

Kathy

--- In gardnerssyndrome@yahoogroups.com, Adeli Ybarra
<ypchadeli@...> wrote:
>
> Kathy hang in there.  Don't be so hard on yourself.  We are not
always going to get along and we are not always going to agree.
That's what close relationships are all about.  We argue with our
husbands, mothers, fathers, and children.  But, we all still love
each-other.  Sometimes we just have to agree to disagree.
>
> "Elra K. Gattermeir" <elphotos60913@...> wrote:   I'm sorry I
brought this issue to anyone's attention. This is not the
> right place to discuss it. However, for anyone interested in why I
> did, Google "Neurontin lawsuit." It was never approved by the FDA
for
> anything other than epilesy.
>
> I'll keep my opinions to myself from now on, and, Breanne, I DO
> apologize for calling you "Lucy." It wasn't meant as an insult or
> anything as when I wrote that email I thought it was your first
name.
>
> Kathy
>
>
>
>
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "gardnerssyndrome" on the web.
>
>     To unsubscribe from this group, send an email to:
>  gardnerssyndrome-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Kathy hang in there.  Don't be so hard on yourself.  We are not always going to
get along and we are not always going to agree.  That's what close relationships
are all about.  We argue with our husbands, mothers, fathers, and children. 
But, we all still love each-other.  Sometimes we just have to agree to disagree.

"Elra K. Gattermeir" <elphotos60913@...> wrote:   I'm sorry I brought this
issue to anyone's attention. This is not the
right place to discuss it. However, for anyone interested in why I
did, Google "Neurontin lawsuit." It was never approved by the FDA for
anything other than epilesy.

I'll keep my opinions to myself from now on, and, Breanne, I DO
apologize for calling you "Lucy." It wasn't meant as an insult or
anything as when I wrote that email I thought it was your first name.

Kathy





---------------------------------
   YAHOO! GROUPS LINKS


     Visit your group "gardnerssyndrome" on the web.

     To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





[Non-text portions of this message have been removed]

Oh, I agree, some lawsuits are legit and I do not mean to say that ALL
trial lawyers are like that.  I am just "skeptical"  because there are
so many lawsuits out there regarding drugs.  And I have been a "guinea
pig."  It was impossible not to be because nothing was helping me.  Some
psychological conditions, like bipolar, are treated on a trial and error
basis because the medicines work very differently on each individual.
And sometimes people, like me, are misdiagnosed as having depression and
anxiety instead of bipolar, so the medicine regimen completely screws
the person's moods up.  This happens a lot.  But when it finally works,
it is worth it all.

Kathy, yes depression is SO serious.  Until I was really struck with it
as a teen, I could not understand how someone could be "sad" about
"nothing."  But once you experience it, you understand.  And it is so
frustrating to explain to someone who has not been through it.  There
was no "real" reason for me to be depressed.  I just was.  And when
someone asked me, "What are you depressed about?" I just wanted to hit
them over the head!  Now that I am well, I have had to learn the
difference between my illness and real situations making me happy and
sad.  I have had to learn how to "feel."  And for the longest time, I
had no idea what my "normal." was.  So I promise you, I am someone here
who takes depression very seriously because I go through it.  Luckily my
bipolar is a mild form, but the depression part is major.  I just do not
have the severe mania that regular Bipolars have.

I do not take issue with the word "disability."  If you knew me when I
was not well, you would agree that I was very "disabled."

And I promise I was not trying to start a debate!  Some things just put
me on my soapbox.  :)

Anyway, thanks for your responses and I hope I did not make anyone mad
at me.  I certainly do not want that.

Sincerely,
Kim
--- In gardnerssyndrome@yahoogroups.com, "Elra K. Gattermeir"
<elphotos60913@...> wrote:
>
> I get it! I'm not understood! I did not mean to say doctors use the
> mentally ill as guinea pigs. I mean psychiatrists test their drugs
> on the mentally ill--you know, their patients in their private
> practice and not in med trials. They give one or the other pill
> until they find the right combination. I just feel that
> psychiatrists are using their patients as guinea pigs. I know all
> drugs are tested before being put on the market but that doesn't
> make them safe these days.
>
> I will ignore your mention of debate and what "they say about"
> opinions. "As for lawsuits," and persons who work with people filing
> legit claims against physicians (or clinics or hospitals), I've
> worked as a legal secretary/paraletal for both plaintiffs' and
> defendants' attorneys and I've found plaintiffs' attorneys more
> interested in their clients' welfare than the defense lawyers. I do
> not condemn an entire class of persons, like attorneys or doctors,
> by judging just one of the class group.
>
> And I am well aware of the med trials done for new drugs and the FDA
> standards but like you say, no debate on that, right. This isn't a
> debate club after all.
>
> Elra Kathy Gattermeir
>
>
>
>
>
>
>
>
>
> --- In gardnerssyndrome@yahoogroups.com, "Robin Weiss"
> robin.weiss@ wrote:
> >
> > My mother was on Neurotin for pain (she did not have fap) she did
> not seem
> > clumbsy but she did start to babble about off the wall stuff.
> After calling
> > the doctor found out that was not out of the norm but it was a
> side effect
> > along with that side effect clumbysness and several other things
> were
> > mentioned. So not matter what it is used for the side effects
> depend on the
> > person. If you look up any meds they all have side effect and
> some are
> > common and some are not but if you have any you should talk to
> your dr about
> > them.
> >
> >
> >
> > As for lawsuits my husband works with a family sueing about vioxx
> and it is
> > legit some at least this one is. But I wanted to say not all
> doctors use
> > the mentally ill for meds trials. I know a lot have tried some of
> the trial
> > meds on stuff like celebrexe and I also know a few research
> doctors and also
> > a superviosor over research doctors for a major pharmisitical
> company and
> > that an accurate statement. There are critierias for each study
> and they
> > are watched over by the fda but I not going to get into that
> debate. Like
> > everyting we all have our opinions and you know what they say
> about them.
> >
> >
> >
> > Robin Weiss
> >
> >
> >
> > _____
> >
> > From: gardnerssyndrome@yahoogroups.com
> > [mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Elra K.
> Gattermeir
> > Sent: Thursday, March 30, 2006 11:08 AM
> > To: gardnerssyndrome@yahoogroups.com
> > Subject: [Gardners Syndrome] Re: neurontin correct spelling
> >
> >
> >
> > I didn't read this message until after I had posted mine to Lucy.
> I
> > totally agree with you on this issue and having worked for lawyers
> > for 35+ years I know that there are unscrupulous ones who try to
> > create cases for themselves.
> >
> > But don't you think that the lawsuits against Vioxx are justified
> in
> > causing heart disease? I worked for lawyers, who were DEFENSE
> > lawyers in the medical field--my firm helped created some of
> Bayer's
> > package inserts, and side effects were deliberately ambiguous so
> any
> > future lawsuits could be defended in court.
> >
> > I also know that doctors use the "mentally ill" as guinea pigs to
> > test their new drugs on and I don't want to see anyone hurt in any
> > way, regardless of their disabilities. And, please, everyone,
> don't
> > take me to task for using the word "disabilities."
> >
> > Hugs, Kathy
> >
> > --- In gardnerssyndrome@yahoogroups.com, littlecaesar99
> > <no_reply@> wrote:
> > >
> > >
> > > I used to take neurontin for my bipolar disorder. It is an anti-
> > seizure
> > > medication but many anti-seizure meds also double as mood
> > stablilizers.
> > > I took it for almost a year, but it made me really clumsy and
> > really
> > > stupid! It was really funny at times but at other times it was
> > scary.
> > > I would drive down the road and not know where I was all of a
> > sudden. I
> > > could walk across carpet in my bare feet and trip over absolutely
> > > nothing. But at the same time, I have a friend who took it for
> > epilepsy
> > > and it did not have these effects on her at all. Now I take
> > Topamax,
> > > which has a whole slew of side-effects, but it works well and I
> > tolerate
> > > it much better.
> > >
> > > As for the class action lawsuit, I would like to bet that, on
> the
> > most
> > > part, the people who are wanting to sue were taking it for
> bipolar
> > and
> > > were already having mental issues. I am very skeptical of these
> > types
> > > of things I see on television, where trial lawyers take
> advantage
> > of
> > > people who either misused a medicine, were misdiagnosed by their
> > doctor,
> > > or the medicine did not work and they continued to get worse. I
> > am not
> > > saying that people do not have bad experiences with meds. I
> have
> > had
> > > terrible experiences and I am so sorry for the people who also
> > have bad
> > > experiences. But with taking drugs like these (and any drug)
> comes
> > > responsibility on not only the doctor's part to monitor the
> > patient's
> > > progress, but also the patient's part to tell the doctor what is
> > wrong
> > > and to take the meds correctly. When they drop the ball, then
> why
> > blame
> > > the drug maker? I pay enough for this stuff as it is.
> > >
> > > Anyway, sorry to rant! I am just a firm believer in personal
> > > responsibility. I take four meds to control my bipolar, and
> trust
> > me,
> > > it took many combinations of many different medicines to get to
> > where I
> > > am today. Having Bipolar AND FAP can be a challenge. But we
> all
> > have
> > > to hang in there and advocate for ourselves.
> > >
> > > Sincerely,
> > > Kim
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "breannelucy"
> > <breannelucy@>
> > > wrote:
> > > >
> > > > Kathy, Oh i am not depressed and far from it, but thanks for
> the
> > > > concern i guess. Breanne
> > > >
> > >
> >
> >
> >
> >
> >
> >
> >
> > _____
> >
> > YAHOO! GROUPS LINKS
> >
> >
> >
> > * Visit your group "gardnerssyndrome
> > <http://groups.yahoo.com/group/gardnerssyndrome> " on the web.
> >
> > * To unsubscribe from this group, send an email to:
> > gardnerssyndrome-unsubscribe@yahoogroups.com
> > <mailto:gardnerssyndrome-unsubscribe@yahoogroups.com?
> subject=Unsubscribe>
> >
> > * Your use of Yahoo! Groups is subject to the Yahoo!
> > <http://docs.yahoo.com/info/terms/> Terms of Service.
> >
> >
> >
> > _____
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>

I'm sorry I brought this issue to anyone's attention. This is not the
right place to discuss it. However, for anyone interested in why I
did, Google "Neurontin lawsuit." It was never approved by the FDA for
anything other than epilesy.

I'll keep my opinions to myself from now on, and, Breanne, I DO
apologize for calling you "Lucy." It wasn't meant as an insult or
anything as when I wrote that email I thought it was your first name.

Kathy

I get it! I'm not understood! I did not mean to say doctors use the
mentally ill as guinea pigs. I mean psychiatrists test their drugs
on the mentally ill--you know, their patients in their private
practice and not in med trials. They give one or the other pill
until they find the right combination. I just feel that
psychiatrists are using their patients as guinea pigs. I know all
drugs are tested before being put on the market but that doesn't
make them safe these days.

I will ignore your mention of debate and what "they say about"
opinions. "As for lawsuits," and persons who work with people filing
legit claims against physicians (or clinics or hospitals), I've
worked as a legal secretary/paraletal for both plaintiffs' and
defendants' attorneys and I've found plaintiffs' attorneys more
interested in their clients' welfare than the defense lawyers. I do
not condemn an entire class of persons, like attorneys or doctors,
by judging just one of the class group.

And I am well aware of the med trials done for new drugs and the FDA
standards but like you say, no debate on that, right. This isn't a
debate club after all.

Elra Kathy Gattermeir









--- In gardnerssyndrome@yahoogroups.com, "Robin Weiss"
<robin.weiss@...> wrote:
>
> My mother was on Neurotin for pain (she did not have fap) she did
not seem
> clumbsy but she did start to babble about off the wall stuff.
After calling
> the doctor found out that was not out of the norm but it was a
side effect
> along with that side effect clumbysness and several other things
were
> mentioned.  So not matter what it is used for the side effects
depend on the
> person.  If you look up any meds they all have side effect and
some are
> common and some are not but if you have any you should talk to
your dr about
> them.
>
>
>
> As for lawsuits my husband works with a family sueing about vioxx
and it is
> legit some at least this one is.  But I wanted to say not all
doctors use
> the mentally ill for meds trials. I know a lot have tried some of
the trial
> meds on stuff like celebrexe and I also know a few research
doctors and also
> a superviosor over research doctors for a major pharmisitical
company and
> that an accurate statement.  There are critierias for each study
and they
> are watched over by the fda but I not going to get into that
debate.  Like
> everyting we all have our opinions and you know what they say
about them.
>
>
>
> Robin Weiss
>
>
>
>   _____
>
> From: gardnerssyndrome@yahoogroups.com
> [mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Elra K.
Gattermeir
> Sent: Thursday, March 30, 2006 11:08 AM
> To: gardnerssyndrome@yahoogroups.com
> Subject: [Gardners Syndrome] Re: neurontin correct spelling
>
>
>
> I didn't read this message until after I had posted mine to Lucy.
I
> totally agree with you on this issue and having worked for lawyers
> for 35+ years I know that there are unscrupulous ones who try to
> create cases for themselves.
>
> But don't you think that the lawsuits against Vioxx are justified
in
> causing heart disease? I worked for lawyers, who were DEFENSE
> lawyers in the medical field--my firm helped created some of
Bayer's
> package inserts, and side effects were deliberately ambiguous so
any
> future lawsuits could be defended in court.
>
> I also know that doctors use the "mentally ill" as guinea pigs to
> test their new drugs on and I don't want to see anyone hurt in any
> way, regardless of their disabilities. And, please, everyone,
don't
> take me to task for using the word "disabilities."
>
> Hugs, Kathy
>
> --- In gardnerssyndrome@yahoogroups.com, littlecaesar99
> <no_reply@> wrote:
> >
> >
> > I used to take neurontin for my bipolar disorder.  It is an anti-
> seizure
> > medication but many anti-seizure meds also double as mood
> stablilizers.
> > I took it for almost a year, but it made me really clumsy and
> really
> > stupid!  It was really funny at times but at other times it was
> scary.
> > I would drive down the road and not know where I was all of a
> sudden.  I
> > could walk across carpet in my bare feet and trip over absolutely
> > nothing.  But at the same time, I have a friend who took it for
> epilepsy
> > and it did not have these effects on her at all.  Now I take
> Topamax,
> > which has a whole slew of side-effects, but it works well and I
> tolerate
> > it much better.
> >
> > As for the class action lawsuit, I would like to bet that, on
the
> most
> > part, the people who are wanting to sue were taking it for
bipolar
> and
> > were already having mental issues.  I am very skeptical of these
> types
> > of things I see on television, where trial lawyers take
advantage
> of
> > people who either misused a medicine, were misdiagnosed by their
> doctor,
> > or the medicine did not work and they continued to get worse.  I
> am not
> > saying that people do not have bad experiences with meds.  I
have
> had
> > terrible experiences and I am so sorry for the people who also
> have bad
> > experiences.  But with taking drugs like these (and any drug)
comes
> > responsibility on not only the doctor's part to monitor the
> patient's
> > progress, but also the patient's part to tell the doctor what is
> wrong
> > and to take the meds correctly.  When they drop the ball, then
why
> blame
> > the drug maker?  I pay enough for this stuff as it is.
> >
> > Anyway, sorry to rant!  I am just a firm believer in personal
> > responsibility.  I take four meds to control my bipolar, and
trust
> me,
> > it took many combinations of many different medicines to get to
> where I
> > am today.  Having Bipolar AND FAP can be a challenge.  But we
all
> have
> > to hang in there and advocate for ourselves.
> >
> > Sincerely,
> > Kim
> >
> > --- In gardnerssyndrome@yahoogroups.com, "breannelucy"
> <breannelucy@>
> > wrote:
> > >
> > > Kathy, Oh i am not depressed and far from it, but thanks for
the
> > > concern i guess. Breanne
> > >
> >
>
>
>
>
>
>
>
>   _____
>
> YAHOO! GROUPS LINKS
>
>
>
> *  Visit your group "gardnerssyndrome
> <http://groups.yahoo.com/group/gardnerssyndrome> " on the web.
>
> *  To unsubscribe from this group, send an email to:
>  gardnerssyndrome-unsubscribe@yahoogroups.com
> <mailto:gardnerssyndrome-unsubscribe@yahoogroups.com?
subject=Unsubscribe>
>
> *  Your use of Yahoo! Groups is subject to the Yahoo!
> <http://docs.yahoo.com/info/terms/>  Terms of Service.
>
>
>
>   _____
>
>
>
> [Non-text portions of this message have been removed]
>

My mother was on Neurotin for pain (she did not have fap) she did not seem
clumbsy but she did start to babble about off the wall stuff.  After calling
the doctor found out that was not out of the norm but it was a side effect
along with that side effect clumbysness and several other things were
mentioned.  So not matter what it is used for the side effects depend on the
person.  If you look up any meds they all have side effect and some are
common and some are not but if you have any you should talk to your dr about
them.



As for lawsuits my husband works with a family sueing about vioxx and it is
legit some at least this one is.  But I wanted to say not all doctors use
the mentally ill for meds trials. I know a lot have tried some of the trial
meds on stuff like celebrexe and I also know a few research doctors and also
a superviosor over research doctors for a major pharmisitical company and
that an accurate statement.  There are critierias for each study and they
are watched over by the fda but I not going to get into that debate.  Like
everyting we all have our opinions and you know what they say about them.



Robin Weiss



   _____

From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Elra K. Gattermeir
Sent: Thursday, March 30, 2006 11:08 AM
To: gardnerssyndrome@yahoogroups.com
Subject: [Gardners Syndrome] Re: neurontin correct spelling



I didn't read this message until after I had posted mine to Lucy. I
totally agree with you on this issue and having worked for lawyers
for 35+ years I know that there are unscrupulous ones who try to
create cases for themselves.

But don't you think that the lawsuits against Vioxx are justified in
causing heart disease? I worked for lawyers, who were DEFENSE
lawyers in the medical field--my firm helped created some of Bayer's
package inserts, and side effects were deliberately ambiguous so any
future lawsuits could be defended in court.

I also know that doctors use the "mentally ill" as guinea pigs to
test their new drugs on and I don't want to see anyone hurt in any
way, regardless of their disabilities. And, please, everyone, don't
take me to task for using the word "disabilities."

Hugs, Kathy

--- In gardnerssyndrome@yahoogroups.com, littlecaesar99
<no_reply@...> wrote:
>
>
> I used to take neurontin for my bipolar disorder.  It is an anti-
seizure
> medication but many anti-seizure meds also double as mood
stablilizers.
> I took it for almost a year, but it made me really clumsy and
really
> stupid!  It was really funny at times but at other times it was
scary.
> I would drive down the road and not know where I was all of a
sudden.  I
> could walk across carpet in my bare feet and trip over absolutely
> nothing.  But at the same time, I have a friend who took it for
epilepsy
> and it did not have these effects on her at all.  Now I take
Topamax,
> which has a whole slew of side-effects, but it works well and I
tolerate
> it much better.
>
> As for the class action lawsuit, I would like to bet that, on the
most
> part, the people who are wanting to sue were taking it for bipolar
and
> were already having mental issues.  I am very skeptical of these
types
> of things I see on television, where trial lawyers take advantage
of
> people who either misused a medicine, were misdiagnosed by their
doctor,
> or the medicine did not work and they continued to get worse.  I
am not
> saying that people do not have bad experiences with meds.  I have
had
> terrible experiences and I am so sorry for the people who also
have bad
> experiences.  But with taking drugs like these (and any drug) comes
> responsibility on not only the doctor's part to monitor the
patient's
> progress, but also the patient's part to tell the doctor what is
wrong
> and to take the meds correctly.  When they drop the ball, then why
blame
> the drug maker?  I pay enough for this stuff as it is.
>
> Anyway, sorry to rant!  I am just a firm believer in personal
> responsibility.  I take four meds to control my bipolar, and trust
me,
> it took many combinations of many different medicines to get to
where I
> am today.  Having Bipolar AND FAP can be a challenge.  But we all
have
> to hang in there and advocate for ourselves.
>
> Sincerely,
> Kim
>
> --- In gardnerssyndrome@yahoogroups.com, "breannelucy"
<breannelucy@>
> wrote:
> >
> > Kathy, Oh i am not depressed and far from it, but thanks for the
> > concern i guess. Breanne
> >
>







   _____

YAHOO! GROUPS LINKS



*  Visit your group "gardnerssyndrome
<http://groups.yahoo.com/group/gardnerssyndrome> " on the web.

*  To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com
<mailto:gardnerssyndrome-unsubscribe@yahoogroups.com?subject=Unsubscribe>

*  Your use of Yahoo! Groups is subject to the Yahoo!
<http://docs.yahoo.com/info/terms/>  Terms of Service.



   _____



[Non-text portions of this message have been removed]

Trust me DEPRESSION happens to the best of us.  I never suffered from depression
but when my kids started having surgeries, I was a basket case.  I took
medication until my kids were better.  I had no idea what I was in for and it
took me down fast.  One of my daughters left collage for a semester to help me
pull it together.  I love her dearly.  I am a very strong person, I never
dreamed my daugher would have to saved me, but she did and I am greatful.

"Elra K. Gattermeir" <elphotos60913@...> wrote:   I answered Lucy's email
personally so as not to burden anyone in
this forum with my "caring" attitude. However, I think persons in
this forum who do not think depression is a valid medical condition,
read up on it. ANYONE can get post traumatic stress disorder from
something happening to them--like having cancer, having life-
changing surgery, having given birth to a child who has
Gardners/FAP, etc., So none is out of that woods yet either.

Don't fault Lucy if she does not respond to this email. I asked her
NOT to, and she needs peoples' support or she wouldn't have joined
this forum.

Kathy

--- In gardnerssyndrome@yahoogroups.com, "breannelucy"
<breannelucy@...> wrote:
>
> Kathy, Oh i am not depressed and far from it, but thanks for the
> concern i guess. Breanne
>






   SPONSORED LINKS
         Gardners syndrome

---------------------------------
   YAHOO! GROUPS LINKS


     Visit your group "gardnerssyndrome" on the web.

     To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





[Non-text portions of this message have been removed]

I didn't read this message until after I had posted mine to Lucy. I
totally agree with you on this issue and having worked for lawyers
for 35+ years I know that there are unscrupulous ones who try to
create cases for themselves.

But don't you think that the lawsuits against Vioxx are justified in
causing heart disease? I worked for lawyers, who were DEFENSE
lawyers in the medical field--my firm helped created some of Bayer's
package inserts, and side effects were deliberately ambiguous so any
future lawsuits could be defended in court.

I also know that doctors use the "mentally ill" as guinea pigs to
test their new drugs on and I don't want to see anyone hurt in any
way, regardless of their disabilities. And, please, everyone, don't
take me to task for using the word "disabilities."

Hugs, Kathy

--- In gardnerssyndrome@yahoogroups.com, littlecaesar99
<no_reply@...> wrote:
>
>
> I used to take neurontin for my bipolar disorder.  It is an anti-
seizure
> medication but many anti-seizure meds also double as mood
stablilizers.
> I took it for almost a year, but it made me really clumsy and
really
> stupid!  It was really funny at times but at other times it was
scary.
> I would drive down the road and not know where I was all of a
sudden.  I
> could walk across carpet in my bare feet and trip over absolutely
> nothing.  But at the same time, I have a friend who took it for
epilepsy
> and it did not have these effects on her at all.  Now I take
Topamax,
> which has a whole slew of side-effects, but it works well and I
tolerate
> it much better.
>
> As for the class action lawsuit, I would like to bet that, on the
most
> part, the people who are wanting to sue were taking it for bipolar
and
> were already having mental issues.  I am very skeptical of these
types
> of things I see on television, where trial lawyers take advantage
of
> people who either misused a medicine, were misdiagnosed by their
doctor,
> or the medicine did not work and they continued to get worse.  I
am not
> saying that people do not have bad experiences with meds.  I have
had
> terrible experiences and I am so sorry for the people who also
have bad
> experiences.  But with taking drugs like these (and any drug) comes
> responsibility on not only the doctor's part to monitor the
patient's
> progress, but also the patient's part to tell the doctor what is
wrong
> and to take the meds correctly.  When they drop the ball, then why
blame
> the drug maker?  I pay enough for this stuff as it is.
>
> Anyway, sorry to rant!  I am just a firm believer in personal
> responsibility.  I take four meds to control my bipolar, and trust
me,
> it took many combinations of many different medicines to get to
where I
> am today.  Having Bipolar AND FAP can be a challenge.  But we all
have
> to hang in there and advocate for ourselves.
>
> Sincerely,
> Kim
>
> --- In gardnerssyndrome@yahoogroups.com, "breannelucy"
<breannelucy@>
> wrote:
> >
> > Kathy, Oh i am not depressed and far from it, but thanks for the
> > concern i guess. Breanne
> >
>

I answered Lucy's email personally so as not to burden anyone in
this forum with my "caring" attitude. However, I think persons in
this forum who do not think depression is a valid medical condition,
read up on it. ANYONE can get post traumatic stress disorder from
something happening to them--like having cancer, having life-
changing surgery, having given birth to a child who has
Gardners/FAP, etc., So none is out of that woods yet either.

Don't fault Lucy if she does not respond to this email. I asked her
NOT to, and she needs peoples' support or she wouldn't have joined
this forum.

Kathy

--- In gardnerssyndrome@yahoogroups.com, "breannelucy"
<breannelucy@...> wrote:
>
> Kathy, Oh i am not depressed and far from it, but thanks for the
> concern i guess. Breanne
>

I used to take neurontin for my bipolar disorder.  It is an anti-seizure
medication but many anti-seizure meds also double as mood stablilizers.
I took it for almost a year, but it made me really clumsy and really
stupid!  It was really funny at times but at other times it was scary.
I would drive down the road and not know where I was all of a sudden.  I
could walk across carpet in my bare feet and trip over absolutely
nothing.  But at the same time, I have a friend who took it for epilepsy
and it did not have these effects on her at all.  Now I take Topamax,
which has a whole slew of side-effects, but it works well and I tolerate
it much better.

As for the class action lawsuit, I would like to bet that, on the most
part, the people who are wanting to sue were taking it for bipolar and
were already having mental issues.  I am very skeptical of these types
of things I see on television, where trial lawyers take advantage of
people who either misused a medicine, were misdiagnosed by their doctor,
or the medicine did not work and they continued to get worse.  I am not
saying that people do not have bad experiences with meds.  I have had
terrible experiences and I am so sorry for the people who also have bad
experiences.  But with taking drugs like these (and any drug) comes
responsibility on not only the doctor's part to monitor the patient's
progress, but also the patient's part to tell the doctor what is wrong
and to take the meds correctly.  When they drop the ball, then why blame
the drug maker?  I pay enough for this stuff as it is.

Anyway, sorry to rant!  I am just a firm believer in personal
responsibility.  I take four meds to control my bipolar, and trust me,
it took many combinations of many different medicines to get to where I
am today.  Having Bipolar AND FAP can be a challenge.  But we all have
to hang in there and advocate for ourselves.

Sincerely,
Kim

--- In gardnerssyndrome@yahoogroups.com, "breannelucy" <breannelucy@...>
wrote:
>
> Kathy, Oh i am not depressed and far from it, but thanks for the
> concern i guess. Breanne
>

Thanks Sue. I asked about that. Have been told,that because it is large
& broadbased that to remove it endoscopically would run a high risk of
perforation, which if it happened would mean immediate surgery. Which
is something we are trying to avoid right now, in order for them to get
my desmoids under control. Saw one of my gastro guys today & he said
that down the road they may consider it. Right now they are going to
monitor things very closely & by doing that hopefully be able to delay
the whipple which I also need.Did your husbands removal go as planned?
And has it ever grown back etc? Thx, Sheila

--- In gardnerssyndrome@yahoogroups.com, suewrenity <no_reply@...>
wrote:
>
> I just saw your post..my husband also had a large adenoma on ampulla
> area a few years ago,and had a papillectomy performed
endoscopically.I
> understand that not all docs do this,but it's less invasive than
> surgery.Take care..
>

Kathy, Oh i am not depressed and far from it, but thanks for the
concern i guess. Breanne

Hi, Breanne

I thought you might want to know that I've heard ads on TV in the
Chicagoland area about Neurontin. Lawyers are soliciting persons who
have attempted suicide or persons who know people who have committed
suicide while taking Neurontin. Maybe you should ask your doctor about
this since you've got enough problems with your disease that can cause
enough depression without taking a medication that can actually
trigger it.

Take care and best of luck to you.

Kathy

--- In gardnerssyndrome@yahoogroups.com, Breanne Geaghan
<breannelucy@...> wrote:
>
> i spelled neurontin wrong in my last reply.  its spelled neurontin
not neountin. sorry haha
>
>
> ---------------------------------
> Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low
rates.
>
> [Non-text portions of this message have been removed]
>

I just saw your post..my husband also had a large adenoma on ampulla
area a few years ago,and had a papillectomy performed endoscopically.I
understand that not all docs do this,but it's less invasive than
surgery.Take care..

Hey,Jim,thanks for replying. My question was for my husband who has
FAP.He came back from his annual ERCP with Dr.DiSario in Utah a month
ago. Pathology report showed a tubulo villous adenoma in duodenum and
tubulo villous adenoma in illeum.Dr.DiSario had burned them off
following biopsy with argon laser beam.My husband does'nt have to be
scoped again for a year.Hope this is helpful.I hope you're not facing
surgery now,but I guess that's up to Doc.The fact that your father has
had one for ten years was good news for us.Keep us posted on what you
decided.........

Brenda, funny you mentioned that for I think my uterus dropped.  Not sure
why all of a sudden.  About six months ago I had a gyn visit and she said my
uturs was deep but nothing else.  Than after pouchities I noticed a drop.
Weird thing is that the mother apron area hurts when in the bathroom
sometimes around my menstrual cycle but that is also so out of wake I have
not cue if it is coming or hiding due to have a lot going on and on my mind.
But the hip thing I had a cat scan less than a year ago  and nothing showed
up on that other than my cyst no word on any ostoma's.  and the pain is not
so much in the bone it is more in the area above the hip bone more like if
you had a kidney infection but a little higher.  I was told that is where
the adreanal glands are so needless to say that is why thy think it is one
of the three.

Weird how so many with fap are having some of the same ptoblems at the same
time.  wonder if the climate or part of the world we live in or something
could have some simularieits.  Well have to eat.





Robin Weiss

  <mailto:robin.weiss@...> robin.weiss@...

  <http://www.fapsupportgroup.org> www.fapsupportgroup.org



In every cloud there is a silver lining, sometimes we need to look for it.
What is your silver linning today?



It is not what you are given in life but what you choose to do with it.



   _____

From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Breanne Geaghan
Sent: Sunday, March 26, 2006 7:29 PM
To: gardnerssyndrome@yahoogroups.com
Subject: [Gardners Syndrome] neurontin correct spelling



i spelled neurontin wrong in my last reply.  its spelled neurontin not
neountin. sorry haha


---------------------------------
Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Non-text portions of this message have been removed]




   _____

YAHOO! GROUPS LINKS



*  Visit your group "gardnerssyndrome
<http://groups.yahoo.com/group/gardnerssyndrome> " on the web.

*  To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com
<mailto:gardnerssyndrome-unsubscribe@yahoogroups.com?subject=Unsubscribe>

*  Your use of Yahoo! Groups is subject to the Yahoo!
<http://docs.yahoo.com/info/terms/>  Terms of Service.



   _____



[Non-text portions of this message have been removed]

i spelled neurontin wrong in my last reply.  its spelled neurontin not neountin.
sorry haha


---------------------------------
Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Non-text portions of this message have been removed]

hey all , this is breanne, i started the msg about hip pain, my pcp put me on
"neuontin" and you take it at night, and it helped alot, however, my phsical
therapist also said i have a "frontal pelvis tilt" so that may be adding to my
hip pain, but look into that drug imentioned above if you have extreme hip pain
like i did

   breanne


---------------------------------
New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low
rates.

[Non-text portions of this message have been removed]

Hi Steph, Let me know what you find out about the hip pain. I have a
lot of left hip,low back,low abdominal pain. Some I know comes from car
accidents, some from the 4 desmoids in my abdomem. However I have many
osteomas scattered around my pelvis & skeleton as per a ct scan. Also I
have about 6 outside on my low back - would not be at all surprised if
it is caused by GS in part. I also have them growing on my ovaries etc -
  seems like the damn things grow everywhere!! Let us know what you Dr
thinks. Take Care, Sheila


ardnerssyndrome@yahoogroups.com, "rain_storm1002000"
<rain_storm1002000@...> wrote:
>
> Hey gang! I went to see my Gastro doc & he mentioned my hip pain
might
> be associated with GS. Does anyone know what could be causing it with
> GS and has anyone else had this trouble??
> Steph
>

Welcome to the group, so sorry to gear about your daughter being
diagnosed with GS. Try not to get discouraged, take time to learn all
that you can about it & in that way you & your daughter will stay on
top of it. Hang in there & ask any questions you want answered & thoses
of us here will do our best to answer. Take Care, Sheila

  gardnerssyndrome@yahoogroups.com, "john_abc_supply_co"
<john_abc_supply_co@...> wrote:
>
> I was informed she would  have to have genetic testing done to make
> sure but she more than likely has GS.  I just don't know what is
going
> to happen to her, what next is it automatic that the colon be
> removed?  What are other treatment options? Is there oral medication
> or does  she have to have chemotherapy?  I never dreamed that this
> could happen.  I knew she had cyst,  she has had several removed. I
> new she had the dental abnormality and so did her orthodontist. But
in
> all of her check up's as a toddler this was never discovered.
> Information on the internet is not very promising.  Im very
> discouraged and worried!  Can anybody direct me to a good
> informational web site?
>

Welcome to the group James. Myself & my brother were diagnosed with
GS end of 04. I had collectomy in Oct 04 & am trying to delay whipple
right now in order for some desmoids to stop growing. But you have
come to a great website, for surpport , encouragement & info. Ask
anything you want to know - some one will always answer, Take CAre,
Sheila

--- In gardnerssyndrome@yahoogroups.com, James Parks
<james_parks67@...> wrote:
>
> Hi, my name is James Parks and I have been dealling and living with
GS  for all my life. My father had it his fatherhad it and so on. In
1999 I  had most of my colon removed because of what they called pre-
cancer.  and a huge polyp. My specialist has since told me it was
cancer.
>        About five weeks ago I went in for a routine  sigmoidoscopy
and an EGD.. The results turned out not so great. They  had me seeing
a Dr. at the University of Michigan the next week. They  took my
blood CBC and sent us home. By the time we got home they were
calling to have me come back because my blood level was at 6.9.
>   I spent three days in the Hospital. We found out two days after
getting  out of the hospital that I had adenalcarcinoma stage two and
the test  and scopes began in earnest at the Uof M hospital. We are
currently  waiting to meet a surgeon at the U of M but the State of
Michigan is  taking their time granting me medicaid and the hospital
will not see me  with out it. Taht is a brief intro to me and my
plight. My wife Wanda  and I are facing this together. I am a pastor
and she a home maker. Any  information on this disease is
appreciated. Thaks for your time.
>
>   James Parks
>
>
> ---------------------------------
>  Yahoo! Mail
>  Use Photomail to share photos without annoying attachments.
>
> [Non-text portions of this message have been removed]
>

Thanks, thats what I was wondering. Have a good week, Sheila

-- In gardnerssyndrome@yahoogroups.com, btrieve2000 <no_reply@...>
wrote:
>
> There is a continuom from adenoma, tubular adenoma, tubular villous
> adenoma, each progressing towrd a possible malignance (adenoma is
> better than tubular, tubular better than tubular villious).
>
> --- In gardnerssyndrome@yahoogroups.com, "shlkndy" <shlkndy@>
> wrote:
> >
> > Hi,
> > I just looked up my pathology reports on my duodenum, where
> > apparently there are layers of polyps & it says mine are 'tubular
> > adenoma', don't know if that is the same as tubular 'villous'
> > adenomas. As to what I am doing about it - have been adviced by
> two
> > surgeons that based on that & a large adenoma in/on my ampula,
> that I
> > should have the whipple surgery in the next few months or so. I
> was
> > diagnosed with GS late Aug 04 & had total collectomy with jpouch,
> Oct
> > 05. However, as I have also just been diagnosed with 4 new
> desmoids
> > growing in my abdomen, one of which is encasing the pelvic
portion
> of
> > the mesenteric artery & vein, I am in the process of seeing if we
> can
> > safely delay the whipple in order to get the desmoids under some
> > level of control. What are your Drs saying you should do? I will
> be
> > having more scans etc & meeting with my Drs again in early to mid
> > April to see if the tamoxifen is working & if the desmoids have
> > stopped growing - if not they are talking of chemo &/or radiation
> to
> > stop them. And I also hope to meet up with the surgeon again &
see
> if
> > he thinks it will be safe to delay the whipple based on the
> desmoid
> > growth etc. Anyone else out there being told they need whipple &
> are
> > trying to delay it? If so , why & how are you making your
> decisions?
> > Its kind of a dicey situation, delay too long & you could get
> > duodenum cancer, have it too soon & I will probably grow a bunch
> more
> > desmoids, seeing as I have done so after the colectomy. Any input
> on
> > you reached your decisions, or thoughts in general would be
> greatly
> > appreciated. Thanks & take care, Sheila
> >
> >
> > --- In gardnerssyndrome@yahoogroups.com, bikentrike <no_reply@>
> > wrote:
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, suewrenity <no_reply@>
> > > wrote:
> > > >
> > > > have any of you had tubulo villous adenomas? If so,for how
> long?
> > > >
> > >
> > > I've got the problem you speak of.  It was confirmed through a
> EGD
> > exam
> > > last Dec.  I've got FAP and had my colon removed and an Ileo-
> anal-
> > pull
> > > through procedure (J pouch) done 22 years ago. I'm 59 now.
> Surgery
> > has
> > > been recommended which I'm researching out as I type this.  I
> just
> > > received my medical records and will be getting a 2nd opinion
on
> > the
> > > path to take tomorrow.  My father, who has FAP, and an
> Ileostomy,
> > also
> > > has a villous adenomas.  It was discovered 10 years ago.  He
> > elected to
> > > do nothing about it and is 85 years old presently. Don't think
> he
> > will
> > > do anything at this point.
> > >
> > > Hope this helps.  Could you elaborate a little on your
problem.
> > I'm
> > > not finding a lot of info about the people who actually have
> this
> > > particular problem.
> > >
> > > Best Regards,  Jim
> > >
> >
>

Hi Robin,
   My pain is in my upper hip and it is there most of the time. I also get pain
in my pelvic region but have my annual physical on the 4th so will make sure to
mention it to my primary doc too.


As Always ~ Steph ~


---------------------------------
New Yahoo! Messenger with Voice. Call regular phones from your PC for low, low
rates.

[Non-text portions of this message have been removed]

Funny that you mention this.  I was also at by GI doc and mentioned that I was
having hip pain (waking in the middle of the night in pain).  He indicated that
it needed to be looked into.  I have had x-rays on the hip, but no answers as to
why its painful.  Taking 400mg of celebrex a day, I would think arthritis would
be out of the question.... Let me know if you hear of anything.

   Jason

Kate Robinson <kater@...> wrote:

   Hey gang! I went to see my Gastro doc & he mentioned my hip pain might
   be associated with GS. Does anyone know what could be causing it with
   GS and has anyone else had this trouble??
   Steph

   Even though it may be caused by GS, it might be something a chiropractor could
work with. Spinal and nerve health can really help keep disease in control.
   Best,
   Kate



   ________________________________________________________________________
   ________________________________________________________________________



   ------------------------------------------------------------------------
   Yahoo! Groups Links




   ------------------------------------------------------------------------






[Non-text portions of this message have been removed]



---------------------------------
   YAHOO! GROUPS LINKS


     Visit your group "gardnerssyndrome" on the web.

     To unsubscribe from this group, send an email to:
  gardnerssyndrome-unsubscribe@yahoogroups.com

     Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





---------------------------------
Have a question? Yahoo! Canada Answers. Go to Yahoo! Canada Answers

[Non-text portions of this message have been removed]

Hi Kate,

I also have hip pain,my GI told me that the is caused by  osteamas in my
bones.

This causes me al lot of pain.

Petra from Holland

-------Oorspronkelijk bericht-------

Van: Kate Robinson
Datum: 03/25/06 19:13:02
Aan: gardnerssyndrome@yahoogroups.com
Onderwerp: [Gardners Syndrome] Hip pain

   Hey gang! I went to see my Gastro doc & he mentioned my hip pain might
   be associated with GS. Does anyone know what could be causing it with
   GS and has anyone else had this trouble??
   Steph

   Even though it may be caused by GS, it might be something a chiropractor
could work with. Spinal and nerve health can really help keep disease in
control.
   Best,
   Kate



   ________________________________________________________________________
   ________________________________________________________________________



   ------------------------------------------------------------------------
   Yahoo! Groups Links




   ------------------------------------------------------------------------






[Non-text portions of this message have been removed]




Yahoo! Groups Links








[Non-text portions of this message have been removed]