--
MZ
I hope you remain pain free.
Sending warm thoughts,
Donna
In article <36C8D8E8...@bc.sympatico.ca>,
Libby_...@bc.sympatico.ca wrote:
> MZ=90
HUGS,
Jane
Mudc...@nospamaol.com
I believe there are many different "conditions" that can cause IC symptoms. If
your symptoms were caused by a chlamydia infection and you've cleared up the
infection, there is no reason not to think that you can't heal the rest of the
way. This is my opinion of course. But I am also of the belief that just
because "they" say IC is incurable, doesn't mean that it is...it just means
"they" haven't figured it out yet. And it doesn't mean that there aren't people
out there who have gotten themselves better from IC. Personally, I am not into
the "there's no hope for healing because the doctors say so". And if you're IC
symptoms were truly the result of an undetected infection, then there is even
more hope for your bladder to return to "normal" (in my personal opinion
anyway). If I were you, I'd stay hopeful and try to do some things to soothe
your bladder to help it heal. : )
Cath -
IC Hope for Interstitial Cystitis
http://www.angelfire.com/biz2/ichope/index.html
In article <19990216090207...@ngol08.aol.com>, cat...@aol.com
>And I trust my physician; if he could
>cure my IC, he most certainly would.
I'm sure he would if he could too Donna and that's very good that you trust
your doctor (obviously). But that really isn't what I was talking about.
Believing that your doctor would cure you if he could is very different than
understanding that just because doctors (on the whole) have not come up with a
definite answer/cure for IC, doesn't mean that there is no hope for getting
better. And that's what I was saying. I'm sorry for your experience with having
long remissions and then having your IC return and I do realize this happens
for many IC patients, but again...that is not what I was talking about either.
For me, I would rather live with hope and pass hope on to others instead of
living with the thought that my IC will return someday because "they" say so or
because that has been some IC'ers experience, but I am also of the belief that
our thoughts create our reality. So I guess we just come from two different
perspectives on this, that's all. Nothing wrong with having different
opinions.... : )
Hugs,
Donna
In article <19990216111221...@ngol06.aol.com>, cat...@aol.com
Carole
Have you subscribed to the ICCORNER NEWSLETTER? It's free, full of information,
and has a Q&A section where urologist Dr. Casey is kind enough to answer YOUR
IC questions. To subscribe or submit questions, email ICCO...@AOL.COM .
In the meantime, what would you consider to be an adequate test to
positively diagnose IC? Mine was diagnosed by symptoms, bladder capacity,
and distention. It took the combination of all three before my uro would
tell me he was almost certain I had IC. Two years later when symptoms
returned full blast and we decided on a second distention, he told me this
verified the IC. Since many other conditions can mimic IC, and until we
have a better way to diagnose, I would never discourage anyone from going
this route --- I find I am better able to deal with it with a positive
diagnosis. Also, the distentions alleviate my symptoms to the point where
I can lead pretty near a "normal" life with my IC.
I've had 31 distentions so far over a period of 24 years and my IC has not
worsened.
I too hope that down the road there will be simpler ways to diagnose.
Also I am confident that a cure will be found.
Sending warm thoughts,
Donna
But I would sure like to hear from others how they DO manage
to maintain hope. What do you tell yourselves, to keep going?
--Susan
In article <19990215221340...@ng27.aol.com>, mudc...@aol.comnospam
says...
I've even been told, by a urologist not knowledgeable about
IC, that there is no reason a cystoscopy should be painful
and because I found it to be painful, I needed to seek counseling.
("let me refer you to someone who can HELP you...")
I wonder how many IC victims actually are in the counselor's
office, referred by doctors who haven't kept up with the research,
with still no medical diagnosis and not knowing the name for the
pain. It's frightening, really.
I hope you will keep us posted on Dr. Keay's research.
--Susan
In article <19990216120426...@ng-fq1.aol.com>, icco...@aol.com
says...
>
>>I'm assuming you were diagnosed by hydrodistention under
>>anesthesia.
>>
>The latest research has brought this "diagnostic" tool under suspicion. The
>supposedly IC-specific lesions seen after distension were seen in the bladders
>of normal women who were undergoing tubal ligation. I reported on this in more
>detail in the most recent ICCORNER Newsletter. Actually, many uros have been
>saying for years that the cysto/hydro told them nothing about IC. My urologist
>has seen this herself. Even if you just go by the IC Database, you'll see that
>there was NO correlation between severity of lesions and IC symptoms. You can
>have a perfectly healthy looking bladder and still have the worst IC pain, and
>vice versa. If this were just one study, I'd be hesitant to be convinced. But
>there have been too many studies which indicate that this method does not tell
>you much about your IC. After all, 10-20% of women with IC symptoms do not have
>lesions. Yet, by all other measures, they have IC and respond to IC treatments.
>This is one reason why I'm really hopeful about Dr. Keay's research which has
>turned up a protein which appears to be unique to ICers and is found in the
>urine. In fact, the protein may actually contribute to the disease because it
>inhibits the repair of the bladder wall. (That's another story in the
>newsletter.) And to remind everyone, this is where the money is going to from
>this quarter's fundraiser for ICA research funds by the AOL IC Support group.
>Please, if you have any money to spare (even a few bucks), help yourself and
>every other ICer by making a donation to this research. Contact myself or Barb
>(ICP...@AOL.COM) for information on this very worthy cause.
>
>Carole
>
>
The one thing that has helped me most is to learn as much as I can about
IC, various treatments available --- and how other people deal with it.
Sending healing thoughts,
Donna
--
Have you visited the IC Network <http://www.ic-network.com>. You'll find a wealth of information on treatments and research, as well as communication boards.
--
HUGS,
Jane
My heavens!! Please, tell us more Donna.
31 distensions? Isn't there a danger of THAT damaging your bladder?
>I too hope that down the road there will be simpler ways to diagnose.
There is talk of a urine test coming out in the near future for diagnosing IC.
Won't that be the..........stuff? LOL!
HUGS,
Jane
In article <19990216182127...@ng-fa1.aol.com>,
mudc...@aol.comnospam (MudcatB4) wrote:
--
I actually had a Dr. tell me that I didn't have an UTI and that they
pain was in my head. I remember walking out on him throwing over my
shoulder that anyone who would dream up this pain deserved to be in a
psych's office...but if anyone didn't believe the pain was real...they
needed to be there more. I remember the utter disbelief on his face.
It was priceless. I still think I should have sued him for
malpractice.<VBEG>
pp
Susan, I have found that I hurt the same whether I am at home or
active. Keeping active keeps my mind busy and off the pain. If I
stay in the bed all day, I find that I hurt worse from other
things...I just plain get stiff and every movement causes more pain.
Getting enough rest and drinking 6-8 32 oz glasses of water also help
more than anything else at this point. I do take Elavil. To be quite
honest, I take it as much for the depression angle as I do the pain
angle. It has helped tremendously with the pain.
I personally have found that after initial diet changes were made that
diet doesn't really affect me that much...unless I don't get my water.
Then I am in *big* trouble.
I was put into remission for three years with DMSO treatments...but
hydro's now just make my situation infinitely worse. Think about it.
What happens when you gain weight? The skin starts getting stretch
marks because it isn't elastic enough to deal with the extra weight.
Ie, the skin is damaged. Stretching the bladder, unless I am *really*
missing something here must do the same thing. In fact, if I drink
one of those 32 oz glasses of water and don't wake up before the
bladder feels like it is about to burst...I'm going to be in trouble
for about three days. I often end up with a regular UTI...but then
again, I have a birth defect on top of the IC.
Hope this helps!!!
On Tue, 16 Feb 1999 13:28:12 -0800, do...@nospam.com wrote:
>Susan: Just a suggestion, but there are a lot of people at the IC Network
>who are also fighting a battle with IC. You are not alone --- sometimes
>it helps just to know that.
Are you inferring that we aren't fighting the same battle?
>The one thing that has helped me most is to learn as much as I can about
>IC, various treatments available --- and how other people deal with it.
I'm sorry, Donna, but I really must be missing something here. I
thought that was what Susan was asking. How do we deal with it....
pp
>As for damaging my bladder, so far it has not. I
>believe any damage to my bladder has been caused by IC. Before I had
I am so happy for all of you who have been helped by distensions of your
bladder. However, I need to warn each and every one of you that I, too, have
had many distensions over my life with IC and the last one I had brought out my
urethra when the scope was withdrawn from it. It came out at least an inch
and now I am more prone to infections with it sticking out like this. My
doctor says this is not uncommon with people having scopes all the time...Just
a warning, that not all distensions or scopings are harmless, but any means,
neither is the anesthesia, whether it is spinal or general....all anesthesia is
dangerous or can be. . BArb.
Is there no way your urethra can be repaired? It sounds ghastly.
Sending warm thoughts,
Donna
In article <19990217113514...@ngol02.aol.com>, icp...@aol.com
(ICPAIN) wrote:
--
I left that one behind some time ago.
--Susan
Does spinal anesthesia mean you are awake for the procedure?
Does the spinal anesthesia provide longer-lasting pain
relief, like, say, into the next day?
I have found that I dread waking up from the anesthesia
more than anything, because that's when the pain
really begins, for me.
--Susan
In article <donna-16029...@dialup254.continet.com>, do...@nospam.com
says...
Hope this helps.
Hugs,
Donna
Maybe a few lawsuits wouldn't be a bad thing -- hit
'em in the wallet, that's what really hurts... ;-)
--Susan
In article <36cc5399...@news.nashville.com>, pete...@neverneverland.cc
says...
>
>Hi Susan!!
>
>I actually had a Dr. tell me that I didn't have an UTI and that they
>pain was in my head. I remember walking out on him throwing over my
>shoulder that anyone who would dream up this pain deserved to be in a
>psych's office...but if anyone didn't believe the pain was real...they
>needed to be there more. I remember the utter disbelief on his face.
>It was priceless. I still think I should have sued him for
>malpractice.<VBEG>
>
>pp
>
Regarding the use of the cysto/hydro as a positive diagnostic tool, what's the
point if the data shows that those lesions could be there whether or not you
have IC? And that you may not show lesions even if you do have IC? I know that
everyone wants to have a definitive diagnosis, but there is no definitive test
for IC yet. Yes, your doctor may choose to do a cysto/hydro to rule out other
diseases but it is not without risks. This is something that ICers need to be
aware of and need to take into consideration before agreeing to these tests.
Some women will consider the 40% chance of positive response to distension
(same percent as bad responses!) an acceptable chance to take for a
non-pharmaceutical treatment.
My uro already does not consider the results of the cysto/hydro as proof of IC.
I saw her last week as we discussed the results of my test from 1991 and I
asked whether she wanted to repeat it (not that I would have agreed to). And
she told me that the test was inconclusive. And painful, and expensive. And
risky. Not all uros are aware of this latest data, although I suspect that many
have already guessed at this as they think about the tests they've done
compared with the severity of the IC in each patient.
One thing I do know is that I am "exceptional" at the other end of the spectrum
from Donna. I had the cysto/hydro and it made my IC worse-permanently. I know
of a few others who this has happened to, but I realize that I represent an
extreme result. I just wish I'd had all the information available to me at the
time when I decided to go ahead with the cysto despite my great improvement in
symptoms from going on the IC diet. I will always wonder what would have
happened if I would have simply said no that fateful day. I was feeling normal
and healthy when I walked into the uro's office and I walked out a cripple.
My secret weapon is faith. God gave me IC for a reason. It has changed my life,
but now I find myself spending so much time helping others instead of making
money for a big company. The other blessing that I have found is that I
discovered that there really are some nice, honest, caring people. I got so
jaded in my work that it seemed that everyone was out for himself. Then I met a
few truly exceptional people who really do care about others. It sure is nice
knowing that there are still some nice people left in the world.
My best suggestion is if you really want to help yourself, then help others.
The love you give will be returned many times over.
Love,
Hugs,
Donna
In article <19990217143907...@ng-fd1.aol.com>,
mara...@aol.com (Maran121) wrote:
--
>I hope you will keep us posted on Dr. Keay's research.
>
I have a very dear friend that has already been in one of Dr. Keay's programs
for research and she is to be in the next one also. She will keep me informed
as to what they find, if anything...I am excited about all of this, very much.
BArb.
>I actually had a Dr. tell me that I didn't have an UTI and that they
>pain was in my head. I remember walking out on him throwing ov
Well, I went to a lady urologist here in Austin, TX because she was new to the
field and I thought, Hey, a woman treating me...that would be good. Well, that
was three years ago and she was right out of medical school, with honors...She
politely told me that she had never seen a case of IC and doubted very much if
it even existed....How would that make all of you feel? I am so glad Martin
was with me, because he told her off in very few words....I cried, like usual
and then I smarted up and told myself that doctors can never hurt me again, not
physically or mentally. They are just people like you and I, nothing special
or maybe they are special, but no more than we are. From then on, I took
charge of my own treatment and if I did not have a doctor that went along with
me, I changed doctors. Remember that it is your body, not theirs, your pain,
not theirs...and if you don't get treated as you should, it is time to forget
them and move on.....Barb.
> In article <19990217142600...@ng138.aol.com>, icco...@aol.com
> (ICCORNER) writes:
>
> >what's the
> >point if the data shows that those lesions could be there whether or not you
> >have IC? And that you may not show lesions even if you do have IC? I know
>
> >>>>>The only point I can see and I see this readily, is that sometimes IC
> patients have bladder cancer and the sure way of knowing is to have a
> distension and biopsies to tell if you do or not. But, I have heard
from other
> IC patients who are helped by distensions also. I was as surprised as you
> about this, but it is oh so true in many cases. Barb.
Another point is that the distention is only a PART of the diagnosis.
Most uros would not consider the procedure without the presence of pain,
frequency, and the absence of infection. Other testing is a part of the
diagnosis, but other things, such as cancer, could cause the same sort of
pain that IC does. The biopsies ruled that out for me. And since my
father had bladder cancer, that was VERY important to me.
Donna
>is there no way your urethra can be repaired? It sounds ghastly.
>
Only with surgery and that is not an option for me right now. Barb. and yes,
it is ghastly, ghastly looking and just plain ghastly.
>My best suggestion is if you really want to help yourself, then help others.
I agree that this is the best medicine for IC sufferers...Reach out to others
and help those less fortunate than yourself. If you have a supportive spouse
or significant other, then reach out to those that do not. If you see the pain
in one's post, reach out to them, even if it is just talk, not give advice. It
certainly relieves my pain a lot to know that I can help others right from my
computer. Barb.
I had another friend that had an epidural when she was in labor. It
"went the wrong way" and paralized her lungs. They had to put her on
breathing machines. Hers was not permanent.
I used to get deathly ill with general anesthesia...but it has come so
far in the past two or three years. The last time I was anesthesized
I actually came to in the operating room as they were moving me off of
the operating table. I felt no pain, was able to go to the bathroom
in less than an hour and left right after that.
My Dad woke up in the operating room and heard the Dr.'s discuss in a
very positive way his situation. He never felt any pain and
thoroughly enjoyed the conversation. Freaked the Dr.'s out until
they were convinced he wasn't feeling any pain. Then they talked to
him even though he had a tube down his throat and couldn't talk back.
The thought of a Dr. sneezing as he was putting a needle in my spine
petrifies me...and you know it has to happen one in a million
times.<VBEG>
Take care!!!
Cindy
C.
> >>>>>The only point I can see and I see this readily, is that sometimes IC
> patients have bladder cancer and the sure way of knowing is to have a
> distension and biopsies to tell if you do or not.
I thought that to look for cancer, you don't have to have a distention -
just an ordinary cystoscopy. Am I wrong about this?
Elisa Collins
ejco...@mmm.com
Opinions expressed herein are my own and may not represent those of my employer.
You may be right, but what about those of us who have relief from symptoms
following distentions? If we never have one, we'll not know for sure
whether we have IC, and will not know if we are in the large number of
IC'ers who are helped by the procedure.
I can relate! I'd give anything to go back in time and just try being less
impatient about getting over the effects of a couple back-to-back UTIs. My
urethra is only now starting to heal after my cystoscopy, hydro and dilation
(only a bit of topical Lidocaine for "anesthesia"!) 5 months ago. Thanks for
your honesty in letting others know of your experiences.
Healing Thoughts,
Maggie
> had another friend that had an epidural when she was in labor. It
>"went the wrong way" and paralized her lungs. They had to put her on
>breathing machines. Hers was not permanent.
I had a friend that this happened to while giving birth to her first child.
She never recovered and was in a nursing home for 2 years before her death.
She was in a coma ever since the epidural went up instead of down. I would
love to know how and why this happens? Barb.
Some doctors want to do hydrodistentions over and over
again to watch for changes, even when they already know
that hydrodistentions cause pain rather than relief
for the patient. It's that particular scenario which
I hope will be ended by the new research.
--Susan
In article <donna-18029...@dialup346.continet.com>, do...@nospam.com
says...
I'm just glad I'm not planning my very first spinal anesthetic! These
horror stories would certainly make me terrified even though they are
extremely rare occurrences. In my 25 years in a nursing office in a 500+
bed hospital, I never heard of even one instance of permanent paralysis or
death as a result of a spinal. I do recall two specific instances of a
temporary foot and leg problem from spinals (part of my job was
processing risk management reports).
Please know that this is not intended as any kind of criticism of either
of you. I know you are both very supportive and that neither of you would
knowingly frighten someone who is needing anesthesia for a procedure.
Sending warm thoughts,
Donna
In article <19990218113619...@ngol07.aol.com>, icp...@aol.com
(ICPAIN) wrote:
--
pp
> > ICPAIN (icp...@aol.com) wrote:
> >
> > > >>>>>The only point I can see and I see this readily, is that sometimes IC
> > > patients have bladder cancer and the sure way of knowing is to have a
> > > distension and biopsies to tell if you do or not.
> >
> > I thought that to look for cancer, you don't have to have a distention -
> > just an ordinary cystoscopy. Am I wrong about this?
> You may be right, but what about those of us who have relief from symptoms
> following distentions?
I was just asking about testing for cancer. I wasn't necessarily arguing
against distentions.
In article <19990218213622...@ng-fs1.aol.com>,
icco...@aol.com (ICCORNER) wrote:
> Actually, I've heard of quite a few cases where nerve blocks into the spine
> have resulted in temporary paralysis, severe headaches, etc. I think we're
> looking at the possibility for human error. If you have someone who does this
> procedure all the time, hopefully they're a bit better. But it is a risk. I
> still see the bigger risk as those 40% that get worse from the cysto/hydro. I
> for one would be a happier person if I didn't know from experience which group
> I was in!
>
> My point is that this is a serious procedure and it has risks both from the
> anesthetic and from the actual distension (urethral prolapse, bladder rupture,
> bladder damage, etc.). These are scary things, but the patient deserves
to know
> both the possible risks and benefits. My doctor and his staff lied to me when
> they told me it was a nothing procedure. That isn't right. I don't know if I
> would eventually have had the cysto had I been told the truth about the real
> risks, but I certainly deserved the chance to choose before the damage was
> done. And I definitely would have had someone drive me that fateful day!
>
> Love,
> Carole
> Have you subscribed to the ICCORNER NEWSLETTER? It's free, full of
information,
> and has a Q&A section where urologist Dr. Casey is kind enough to answer YOUR
> IC questions. To subscribe or submit questions, email ICCO...@AOL.COM .
--
Maggie:
My first uro did the cysto/hydro without anesthesia, which probably contributed
greatly to my body literally going into shock. I switched uros shortly
thereafter (with help from the ICA) and the new uro told me that she was used
to getting patients from the guy who butchered me! I was simply relieved at the
time to find out that no "physical" damage had been done (although I'm not even
sure of that since my IC got worse immediately after and really I've never been
the same). She also told me that it could take up to 6 months for the awful
pain and spasms from the cysto to clear up. Actually, it took 8 months (I set a
record!) and an incredible amount of pain killers and muscle relaxants.
So what did this procedure prove? My current uro says that even though the
other guy saw lesions that the procedure itself did nothing to definitively
diagnose IC. She bases her diagnosis on my symptoms, the absence of bacteria,
etc. But she doesn't think a cysto/hydro would help her diagnosis at all and
doesn't recommend them for me. The only good I see this test having done is
that I can list it as a test done for my IC since many doctors still want to
have some test data, even if the data doesn't mean anything. Ouch.
Still hurting after all these years,
My point is that this is a serious procedure and it has risks both from the
anesthetic and from the actual distension (urethral prolapse, bladder rupture,
bladder damage, etc.). These are scary things, but the patient deserves to know
both the possible risks and benefits. My doctor and his staff lied to me when
they told me it was a nothing procedure. That isn't right. I don't know if I
would eventually have had the cysto had I been told the truth about the real
risks, but I certainly deserved the chance to choose before the damage was
done. And I definitely would have had someone drive me that fateful day!
Love,
Jane
>Actually, you are in more danger on the freeway going to and from the
>hospital than you are having a spinal.
And most people that operate a motor vehicle know that. Most DMV Divisions
make that public knowledge as well as Insurance companies.
Everyone has the right to know of the dangers associated with having an
epidural or any procedure for that fact. Too often the REAL risks are not
discussed with the patient. Next time any of you go in for a procedure of any
type, take notice as to how much ACTUAL time is spent with you discussing the
dangers. I think you'll be surprised.
Jane
>Please know that this is not intended as any kind of criticism of either
>>of you. I know you are both very supportive and that neither of you would
>>knowingly frighten someone who is needing anesthesia for a procedure.
>>
>>Sending warm thoughts,
>>Donna
Donna, I never took this the wrong way at all. I am sorry I even posted that,
but I can tell all of you that I still choose spinals or epidurals over
generals any day of the week, just because I have such a bad reaction to
anesthesia. Barb.
HUGS,
Jane
Thank you, Barb. I hope you are having a pleasant day.
Hugs,
Donna
In the hospital where I go it's a foregone conclusion that you will meet
with an anesthesiologist a few days before surgery to review your options,
let him/her know of any medications you are taking, health problems, etc.
This is the time to ask about pre-operative medications. If you're
particularly anxious about a procedure, tell the anesthesiologist and they
will order relaxing medications for when you arrive at the hospital. And
if you're REALLY scared, most will order a sleeping pill for you for the
night before. My experience is with spinal blocks.
In article <19990219002031...@ng-fr1.aol.com>,
mudc...@aol.comnospam (MudcatB4) wrote:
--
I hope you continue to do well with this treatment.
Hugs,
Donna
>ake notice as to how much ACTUAL time is spent with you discussing the
>dangers. I think you'll be surprised.
Yeah, if you were not scared enough, just read the forms you have to sign to
have the simplest procedure these days...I was even asked if I bled on the
staff, would I agree to an Aids test? I said yes if they would agree to one
before they started the procedure, just in case they bled on me. Barb.
Barb: Since I know (make that knew) a nurse who contracted Aids from a
patient's blood, and died with it, and since the law prohibits Aids
testing without the consent of the patient, I think it's understandable
that patients would be asked this. And yes, if a nurse bled on me, I
would request an Aids test.
I totally agree! I'm also learning that alot of doctors don't seem to trust
what another doctor has written or even what a radiologist has read on an xray.
It's to the point where we have to diagnose ourselves, treat ourselves, etc.
I've noticed that alot of doctors seem to have quite an ego!!!
You're still a spring chicken Barb!!!! I'm sure the grandkids keep ya young!
hee!
HUGS,
Jane
Barb:
When I switched uro's after that horrible experience that I had, the first
thing the new uro wanted to do (after I healed) was to repeat the cysto so she
could see for herself. That was back in 1991. Now in 1999, she says that she
doesn't believe that the procedure would tell her anything about IC based on
her own experience and on current IC research.
Also, many people have written to me with the same thing, that their new uros
want to repeat the cysto so that they can see for themselves. It's a natural
instinct for doctors, I think. It's also understandable that people want to see
for themselves, but I don't think that's appropriate for something that poses
potential risks to the patient.
If they help you, then I understand you doing it. But if you do it
once and it doesn't help, there is no way in this world I would let
them do it a second time...now;-)
pp
NO one tells you all the risks. For example, does your hospital
inform a patient that steriods cause bone deterioration, cateracts,
etc, before giving it to a patient?
Before each hydro have you been informed that in X% of surgeries, the
urethrea becomes distended? That X% of patients die per year due to
botched anesthesia, or that X% of patients had there bladders
perforated?
I don't mean to rag on you personally, but that statement just isn't
true. I've been to the hospital with various family members four
times in the past two and weeks. Twice with my Dad, once with my
mother, one with my brother. (The idiot cut his wrist with a
knife...long story and no he wasn't trying to commit suicide.) My Dad
was given steriods even though he told them they caused his heart to
race and he didn't want them. They gave my mother steriods without
informing her. My brother and my mother were treated before they did
the paper work. And no, this wasn't all at the same hospital.
Even the pharmacist's don't give us the real risks involved in taking
medication. The steroids didn't say this medication has been shown to
cause bone deterioration and cateracts, etc.
By the way, does your hospital give the patient a copy of the Patients
Rights? If they do, I would *really* appreciate it if you would post
a copy.
HUGE HUG!!!
pp
On Fri, 19 Feb 1999 06:56:20 -0800, do...@nospam.com wrote:
>At the hospital where I go they most definitely tell you about all the
>risks, and you have to sign a paper that says you have been advised of the
>risks and that you still chose to have the procedure, knowing that there
>is risk involved. It's one of the things the Joint Commission on Hospital
>Accreditation likes to see --- plus it protects hospitals and physicians
>from law suits.
>Donna
>
>In article <19990219002031...@ng-fr1.aol.com>,
>mudc...@aol.comnospam (MudcatB4) wrote:
>
>> >From: do...@nospam.com
>> >Date: Thu, Feb 18, 1999 22:18 EST
>> >Message-id: <donna-18029...@dialup339.continet.com>
>>
>>
>> >Actually, you are in more danger on the freeway going to and from the
>> >hospital than you are having a spinal.
>>
>>
>> And most people that operate a motor vehicle know that. Most DMV Divisions
>> make that public knowledge as well as Insurance companies.
>> Everyone has the right to know of the dangers associated with having an
>> epidural or any procedure for that fact. Too often the REAL risks are not
>> discussed with the patient. Next time any of you go in for a procedure of any
>> type, take notice as to how much ACTUAL time is spent with you discussing the
>> dangers. I think you'll be surprised.
>>
>> Jane
>>
>>
>>
>>
>> Mudc...@nospamaol.com
> Donna,
>
> NO one tells you all the risks. For example, does your hospital
> inform a patient that steriods cause bone deterioration, cateracts,
> etc, before giving it to a patient?
My hospital didn't, but I wasn't given steroids in the hospital. The
pharmacy does give me information sheets, which list the risks for
steroids. And yes, cataracts may result. And I had cataracts removed 18
months ago (it took less than 15 minutes for each eye). And I can see much
better than any time in my adult life --- even got the corrective lens
requirement lifted from my drivers' license.
> Before each hydro have you been informed that in X% of surgeries, the
> urethrea becomes distended? That X% of patients die per year due to
> botched anesthesia, or that X% of patients had there bladders
> perforated?
I have to admit that I've never been told percentages, but have been told
that there are incidences when patients die while under anesthesia. My
uro told me there is always the chance of perforation. And I've only
heard of one other person with a distended urethra.
>
> I don't mean to rag on you personally, but that statement just isn't
> true. I've been to the hospital with various family members four
> times in the past two and weeks. Twice with my Dad, once with my
> mother, one with my brother. (The idiot cut his wrist with a
> knife...long story and no he wasn't trying to commit suicide.) My Dad
> was given steriods even though he told them they caused his heart to
> race and he didn't want them. They gave my mother steriods without
> informing her. My brother and my mother were treated before they did
> the paper work. And no, this wasn't all at the same hospital.
I'm sorry you've had bad experiences with hospitals. And I do wear a
medic alert indicating I am allergic to penicillin and sulfa as protection
against being given either of these meds in the event of an accident or ?
if I couldn't tell them that.
>
> Even the pharmacist's don't give us the real risks involved in taking
> medication. The steroids didn't say this medication has been shown to
> cause bone deterioration and cateracts, etc.
Maybe it's different in Oregon, but we always get an information sheet
with our prescriptions --- plus in Oregon if you get a new prescription,
the pharmacist is required to "counsel" you and answer your questions.
>
> By the way, does your hospital give the patient a copy of the Patients
> Rights? If they do, I would *really* appreciate it if you would post
> a copy.
Yes, they do --- every patient is given one --- and if I still have a copy
will be happy to post it. I have so many patient information packets that
I usually discard on the way out.
Hugs back to you.
Donna
--
Cath -
IC Hope for Interstitial Cystitis
http://www.angelfire.com/biz2/ichope/index.html
:)
Donna
In article <19990222101658...@ngol02.aol.com>, cat...@aol.com
(CATH767) wrote:
--
We get those here in North Carolina too. However, I have found that they list
the minimal amount of possible side effects. If you check out side effects for
yourself on the web you'll find that there is alot more that are not listed on
the sheet.
Jane
ICACURECOMING
I have to agree here - I brought up the risk associated with
hydrodistension, especially perforation or tearing to the bladder, and the
surgeon said it doesn't happen except in people with completely scarred
bladders... Hmmm. As for anaestesia - that's why I didn't want the
cysto/hydro and why I don't want a biopsy - I know a little too much about
anaesthetic agents for my own good.
Hugs to all,
Andy.
With wishes for a pain-free day,
Donna
In article <01be6016$5de9c120$4601a8c0@verbal>, "Andy Dann"
<an...@wibble.moose-hoose.demon.co.uk> wrote:
--