I am sad to say that I am not one of the
lucky implatees of mesh. I have had mine
removed after having it me for 2 years.
The damage that was left behind from the
Perfix Plug and patch was so immense that
I have now been diagnosed with RSD/CPRS,
which is a chronic nerve condition with no
cure and great possibilites of it getting
worse. I now wear a portable T.E.N.S unit
up 16 hours a day and I am still taking
pain medication. I to have been
researching for many years and I find it
absolutely hoorifying that all the doctors
world wide know of these mesh
complications but continue to implant
these products. I do understand that "WE"
the sufferers of these products are the
minority as there has been more positive
results from the use of mesh than the
horrible complications because of them,
but the fact remains they do create really
bad complications and something needs to
be done about it. I just don't understand
why the medical field will not put all the
cards on the table when speaking with a
potential hernia patient, there are
alternatives to mesh implants. When I
finally was able to find a surgeon who
knew what was happening to me, he was able
to remove the implant and do a modified
shouldice repair without mesh. By the time
of my mesh removal the damage had already
been done, the surgeon told me that if I
had found him sooner all of this would
have been or could have been prevented
but, with the plug and patch being in me
for so long he told me my groin was a
horrible mess. I had a 3 inch tear in the
pelvic floor with many more smaller rips
and tears thruout the entire region. He
also told me that what he took out equated
to a piece of concrete because that is how
hard it had transformed itself. Now I live
in daily pain and trying to find a way to
live with what I have and what has been
done. I have visited many sites and it
really is staggering to see the many
people who are suffering By these implants
I only wish for all the others that all of
their suffering would come to an end. It
is to late for me but by me coming to
these sites and maybe offering a litlle
bit of information about these products, I
may just help someone and they won't have
to live like The others who live in
constant pain.
You have my deepest, most sincere
understanding and support. It is beyond
tragic that something that was introduced
to help people is resulting in such
suffering. Mesh has done its task in
sharply reducing the number of hernia
recurrences, and yes, many lucky people
suffer no ill effects whatsoever (I know
quite a few personally). They must be
blessed.
However mesh has brought with it a
large-scale nightmare. The mesh problem is
apparently so common that there is now a
whole field of medical practice revolving
around "mesh removal" (!).
Google meshoma, mesh complications, mesh
infections. There are literally endless
sites covering this subject. Nobody can
keep track of all the hundreds of
websites, posts, etc, about this issue.
It's all over the place.
Patients shouldn't have to do tons of
medical research before having surgery.
Surgery is meant to cure, not to cause so
much pain, and we rely on professionals to
do the research as that is their field,
not ours.
Many people don't even know how to use the
net, let alone do the very intensive
technical research that seems to be
required here. I often find blogs, etc,
difficult to manage, and I'm "reasonably"
ok with the net.
For many people, it's just not possible to
do this type of research, so they trust
their surgeons blindly and don't ask
questions because they don't know what
questions to ask.
I wish I had the answers. Right now, I'm
absolutely petrified to have surgery, and
am hoping & praying I can continue
"watchful waiting" until something better
& safer is developed. The more this is
reported, the faster the medical people
will act to develop a much safer
procedure, and hopefully come up with
decent solutions for those people who've
already suffered such ill effects from
mesh.
We can only hope someone out there with
some real influence is reading these
posts. Meanwhile, if at all possible you
should contact the American (or British,
or Canadian, or French, etc, etc) Hernia
Association and tell them what has
happened to you.
|
Artie
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to GDSM Posted: 07-09-08 10:21am
Hello GDSM.....
You might, if at all possible, wish to
contact Dr Sedlack at the Capital Hernia
Center in Washington, DC. He is a mesh
removal specialist and he has made a
presentation on the subject to the
American Hernia Society. He is keenly
aware of this issue and would probably
appreciate hearing from someone like
yourself who has suffered so badly from
this.
You might also contact Dr Robert
Fitzgibbons at Creighton University
Medical.
I recently emailed Professor Andrew
Kingsnorth, chair of the British Hernia
Society, about my own fears regarding
mesh, as well as the issue in general.
Judging by his comments on several
websites, he knows what's going on
(although he told me he couldn't enter
into a private email debate on the issue).
In 1994 a German report voiced very
serious concern about the medical field
not knowing the long-term outcome of
plastic mesh left in the body. The doc's
in that article urged the use of mesh in
only 1% of cases, due to the risks
involved.
I agree with you 100% about the doc's not
telling patients about alternatives. The
surgeon I saw most recently, while patient
& very understanding, mentioned no
alternatives...however he DID mention the
possible complications and was honest
about that. He even said that at this
point, the risks outweigh the risk of
"watchful waiting". (!).
In the meantime I will look into the "bio"
meshes Permacol and Surgisis, which, so
far, SEEM to be working out well, without
provoking the massive complications
associated with the plastic ones.
|
davidak
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bio mesh Posted: 07-25-08 07:43am
The thing with the bio mesh is that for
some people the idea of having some pig
flesh inside the body is unacceptable,
specifically for Jews and muslims, and
others who do not like the idea of it.
Maybe they could develop a bio mesh made
from a patient's own flesh. I do not know
enough about it to really know if it is
possible, but if a person has a hernia,
then maybe a sample of their tissue cells
could be taken and grown in a laboratory
into a bio mesh that would be completely
compatible with the person it is going
into.
|
Artie
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bio mesh from person's own tissues Posted: 07-25-08 08:17am
Hello Davidak
See this website from Germany: http://www.bio-pro.de/en/region/freiburg
/magazin/02026/index.html
This is EXACTLY what you're describing: a
bio mesh cultivated from the patient's own
tissues. Of course, this would be the best
solution as bio-compatibility, and the
chance of rejection, wouldn't be an issue.
Not would any cultural considerations. You
may wish to contact the people running
this website.
I recall recently seeing a site about a
vegetable-based bio mesh being tested in
France. I'm afraid I can't find it.
Meanwhile it seems worthwhile to continue
looking into all experiments with bio.
I'm currently waiting for a return call
from the people here in the UK who make
Permacol, the porcine-based bio material.
The same material in the States is called
Surgisis. The human-tissue (cadaver, not
live) based material is called AlloDerm
(my dad recently had this implanted during
a dental procedure).
I'm definitely not a doctor or a bio
researcher. However, personally I believe
they may prove, in the long term, much
safer than plastics. So far they are
showing promise in not provoking the
strong foreign-body reaction associated
with plastics. They are also proving to be
more infection-resistant (so far).
|
^Serenity^
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Posted: 07-25-08 08:40am
There are many surgeons that are speaking
out against the mesh. It's a matter of the
FDA listening to them and to all of us
that filed adverse event reports.
As for the cadaver tissue there are many
risks are involved with this.
|
Artie
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mesh nightmare Posted: 07-25-08 09:25am
The FDA only covers the US, sadly. Even if
the FDA suddenly issued an overall warning
statement, the present methods would
continue everywhere outside the US for a
very long time. Especially in countries
with cash-starved public health services
such as the NHS in the UK. These services
are always DESPERATE to save money...and
of course, bio materials are MUCH
costlier than plastics.
Yes...I've read that the human version can
be risky, and personally, I'd prefer to
stay away from it. At least until a lot
more research is done. Ideally, the
solution would be a mesh developed from
the person's own tissues, as suggested by
Davidak. This would eliminate all risks of
rejection & probably infection. Let's
hope research into this speeds up.
I've just had a very long conversation
with someone at TSL (Tissue Science
Laboratories) here in the UK. They produce
Permacol, the porcine-based material which
is biologically cross-linked to human
collagen (I'm no scientist, but that seems
to be the gist).
As this lady explained, it's main current
application in the UK is (very sadly) to
replace infected/rejected mesh that must
be removed (!). She told me all about
"meshomas" -- and if you can believe it,
worse. Such as plastic mesh entangling
intestines, etc. She says she sees these
scenarios quite often when she's called in
to supply bio material as a "replacement".
She knows about the denials, etc, that are
going on......i.e., "synthetic mesh is
inert, it can't be rejected, it's
completely safe..." Etc.
She cannot understand why they don't use
bio materials to start with and avoid a
lot of this....but of course, as she said,
it's the same old story: Money. The bio
products are much more expensive, so they
use the cheaper "plastic stuff" -- and
then have to put the patient through the
horror of replacing it when things go
wrong.
She told me she asks, when she contacts a
surgeon, "would you put plastic mesh into
your own body?" She said that very often
there is simply no reply. Meanwhile she
will be emailing me a list of surgeons in
the southeast of England who use it
instead of plastic, and I'll be contacting
them.
I recently emailed Prof Andrew Kingsnorth,
top UK hernia specialist and chair of the
British Hernia Society, about the mesh
issue. He was kind enough to reply, saying
he couldn't enter into an email debate on
this. At least he replied...which
indicates they do know about this.
I don't know if anyone over here files
anything like "adverse-event" reports.
However I would imagine if they have mesh
complications they must report it
"somewhere". Personally, I desperately
want to avoid not only plastic mesh
surgery but also the ugly politics that go
along with any issue like this. Ugh. I
just want to know that if/when I, or
anyone I care about, requires this surgery
they get a VERY safe procedure that is
VERY unlikely to cause problems later on.
Simple as that.
Thanks a million, Serenity, for being a
VERY brave pioneer. We can only hope
someone out there will finally
listen.................
|
^Serenity^
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Posted: 07-25-08 19:04pm
Artie
wrote:
As this lady explained, it\'s main current
application in the UK is (very sadly) to
replace infected/rejected mesh that must
be removed (!). She told me all about
\"meshomas\" -- and if you can believe it,
worse. Such as plastic mesh entangling
intestines, etc. She says she sees these
scenarios quite often when she\'s called
in to supply bio material as a
\"replacement\". She knows about the
denials, etc, that are going on......i.e.,
\"synthetic mesh is inert, it can\'t be
rejected, it\'s completely safe...\" Etc.
I believe this because I know people this
has happened to not to mention myself.
Artie
wrote:
I don\'t know if anyone over here files
anything like \"adverse-event\" reports.
However I would imagine if they have mesh
complications they must report it
\"somewhere\". Personally, I desperately
want to avoid not only plastic mesh
surgery but also the ugly politics that go
along with any issue like this. Ugh. I
just want to know that if/when I, or
anyone I care about, requires this surgery
they get a VERY safe procedure that is
VERY unlikely to cause problems later on.
Simple as that.
Maybe you can contact the health
department in the UK or when speaking with
these surgeons ask them who they report
problems to such as problems with the
mesh. There must be someplace similiar to
the FDA.
|
Artie
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reporting mesh problems Posted: 07-26-08 02:40am
When I've mentioned this situation to
doctors here, they basically pooh-pooh it
& deny it's happening. "ok...maybe
there's the odd case here & there...."
Because health care here is dominated by
the public NHS (although there's a growing
private health care sector) it seems the
mentality is somewhat different from what
it is in the USA where most people pay (in
one form or another). The culture of
"suing" over bad medical practice simply
never developed here -- or in other
countries with public health services.
There's a superb UK website called Hernia
Bible. Please, google it. It's all about
"alternatives", thanks to this mess. On it
you'll see posts & info from this
country (& elsewhere). If you look in
the Surgery section, you'll see the same
stuff as on this website. However on the
various other hernia blog-sites you'll
notice how few UK posts there are, despite
over 80,000 hernia operations performed
here per year.
The lady I spoke with at TSL (the UK firm
who make Permacol) told me their "bio"
material is mainly used when plastic mesh
must be removed (!). So obviously this is
happening here -- and everywhere.
If you look at studies from the UK,
Denmark, Sweden, Holland, Greece, etc,
you'll see the same (roughly) 30%
statistic for Chronic Pain Syndrome
showing up everywhere. All these countries
now almost exclusively employ mesh
surgery. They are definitely aware of this
problem -- that clearly shows up in the
text of every study. However how to get
them to DO something about it...... (?)
that may have to start with the FDA, after
which other countries may hopefully take
action.
|
Artie
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30% report chronic pain Posted: 07-26-08 13:14pm
Please see this current Swiss study: http://cli
nicaltrials.gov/ct2/show/record/NCT0062553
4
As usual, it reports an average of 30%
suffering chronic pain as a result of
surgery, significantly higher with open
surgery than laparascopic.
See this UK study:
h
ttp://www.lapsurgeon.org/Jenkins%202008%20
hernia%20review.pdf
It reports the exact same figure: 30%.
This is outrageously high considering
hernia surgery is meant to "cure", not to
ruin a patient's life. Would this rate or
degree of chronic suffering be seen as
"acceptable" in any other surgical area?
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Artie
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From the same recent Swiss study: Posted: 07-26-08 13:27pm
“Chronic pain or persistent neuralgia
has been recognized as a complication
after inguinal hernia repair but was
reported in the 1980s as a rare and
infrequent condition. Studies from the mid
1990s have reported a higher frequency,
with up to 50% of patients reporting pain
after hernia repair more than 1 year after
surgery. Chronic pain after hernia repair
can be disabling, with considerable impact
on quality of life.”
Is it just coincidence that the sharp
reported rise in chronic pain arrived with
the sharply increased use of mesh surgery
in the mid-1990s?
|
Artie
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From a recent UK study: Posted: 07-26-08 13:41pm
And this, from a recent UK study by
Jenkins & O'Dwyer:
"Chronic pain is pain that persists or
occurs after normal tissue healing has
taken place and can reasonably be defined
as pain persisting three months after
inguinal hernia repair. About 30% of
patients when asked, or on completion of a
confidential questionnaire, report long
term pain or discomfort at the hernia
repair site."
