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Surgery options
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03/10/2003 23:51
Mary Beth

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03/10/2003 23:51
Mary Beth

not registered

Surgery options

My husband, who has suffered from DC for approximately
20 yrs, has had three surgeries to his left hand and one
to his right. He has such strong recurrence in both hands
as well as very excessive scar tissue build up. We were
never told that there were different approved surgeries
available for DC relief. The surgery performed on him all
four times was Fasciectomy, which is probably the same one
that anyone on this forum has had. Very aggressive and
extensive with jagged cuts, many stitches and a difficult
recovery period. This is the surgery where skin grafting
is not done even though we now know that if it had been
his recurrence would possibly not be as great. That is
a different type of Fasciectomy, (radical palmar fascie-
ctomy.) I have learned that a much less invasive/aggressive surgery used
to be the norm for DC. This is a quote from the Talon
Topical Verapamil website explaining Fasciotomy, the less
aggressive surgery..."When the bands are cut through small
cuts in the palm. This can be done under local anesthetic
(awake with numbed hand), but is reserved for elderly who
are unfit or unsuitable for more complicated surgery."
Regardless of whom it is usually reserved for, it sounds
as if the purpose is release of contracture with nominal
cuts/recuperation etc. (Same goals as the french needle
Aponevrotomy that we keep being told is not legal in this
country) After all a small cut to access the cutting of a
band may not actually be very much larger than a needle.
The second interesting quote is from http://www.combel.org
/History.html which is under their Conclusions on DC
"...the surgical approach of Dupuytrens Disease has swayed
from the very simple closed fasciotomy to the very aggres-
sive radical palmar fasciectomy. The less traumatising
techniques were often found insufficient to correct the
contracture and to bring lasting improvement. The more
aggressive operations were developed on the unfounded hope
that recurrences could be avoided. This has never happened
and these techniques were responsible for a great number
of complications." Since my husband has terrible recurr-
ence, very excessive scar tissue and nerve and vessel
damage, even though he is not elderly, we are going to push
for this surgery. Just wanted everyone else to have the
opportunity to question your surgeon's about it too.

03/10/2003 23:54
juli

not registered

03/10/2003 23:54
juli

not registered

ditto

Mary Beth,

Fasciectomy seems to be the procedure of choice for american hand surgeons. I have similar aggressive disease and will soon need another surgery soon. After two faciectomies, I would like to find a surgeon who would perform the "less envasive" fasciotomy. My own personal rationale is that I have been through the collagenase program at stoney brook and I am a firm believer that this will some day be the treatment of choice if the FDA would get off their butts and approve the phase three trials before BTC goes bankrupt. I live on the east coast usa. Do you(or other readers) know of any surgeons who would perform a fasciotomy?

03/11/2003 23:35
Mary Beth

not registered

03/11/2003 23:35
Mary Beth

not registered

Fasciotomy

Julie,
Sorry to hear of someone else with a severe case.
Even though I don't suffer from the disease, I see the pain
and inabilities that my husband deals with everyday and it
is heartbreaking. Since I have been with him each time a
doctor has acted as if nothing can be done but the aggres-
sive Fsciectomy, which has not only worked but made his
condition worse, I feel like I can understand the frust-
rations you all feel. I only found out about the "other"
procedure about 1 1/2 wks ago. I am also on the east coast,
so as soon as I learn of someone I will post or email you
immediately. However I think the first step for us all is
to go to our Dr.'s with the information that we now know
about this alternative and insist that they discuss it and
consider it. Hopefully for us both this knowledge can be
power. After all it is obviously approved, unlike the
other treatments everyone has been asking for. I have
emailed one Doctor who would not commit by email, but ac-
knowledged it is an option and agreed to an appointment to
discuss it. We hope to see him within a week or so and I
promise to let you know our results. Ask your doctor and
let me know to. Thank you, Mary Beth

03/11/2003 23:25
Sean,

not registered

03/11/2003 23:25
Sean,

not registered

Fasciotomy

Mary Beth,
This topic has been covered considerably on this forum. What you have discovered is that for many people with an aggressive form of DC, it is difficult to slow down DC. For most people, a limited fasciectomy has a better (or less) rate of recurrence than a fasciotomy or NA. This will vary however, depending on each person's situation. A fasciotomy is not unusual, as you suggest. My surgeon discussed the procedure with me, but said from his experience, the limited fasciectomy was a much better procedure for most people. My limited fasciectomy worked very well. Finger is normal with 0 degrees contraction and scar that can't be seen. It has only been about a year, so it is a guess what the future holds.

It is a debatable subject, whether or not all of the diseased tissue should be removed. For many it seems to be best, but for some it perhaps is not the best or difficult to determine because they have such an aggressive form of DC.

03/11/2003 23:02
Mary Beth

not registered

03/11/2003 23:02
Mary Beth

not registered

fasciotomy

Sean,
How wonderful to hear that you are fortunate enough
to have found an open minded and honest surgeon. After
three surgeons and two General Practitioners have told my
husband that fasciectomy was the only treatment/surgery
available for DC, and after noting that on the many Web-
sites sponsored by Doctor's it is repeatedly declared that
fasciectomy is the only treatment for DC, I really believed
I had stumbled onto something special. I had to learn what
a fasiotomy was from a prescription lab website, and a
research paper. Please hurry and give us the name and
email address of this Dr. so that Juli, myself and others
like us can make contact immediately.

Mary Beth

03/13/2003 23:32
Wendy 
03/13/2003 23:32
Wendy 
Surgery

Please let me know the name of the doctor you are discussing. I had the jagged incision surgery six months ago on my left pinkie finger and now there are lumps in the palms of both of my hands. The right hand seems to be quiet at the moment but the left hand continues to "blossom" day by day. I am also on the east coast. Heard about the hand center in Manhattan. My husband's friend had his surgery there and he has healed marvelously and has had no recurrences in more than two years. But even he told me that the hand will never be the same (my surgeon told me the same thing).

03/14/2003 23:51
Juli

not registered

03/14/2003 23:51
Juli

not registered

Fasciotomy vs. Fasciectomy

I live in northern Delaware. My hand surgeon is Dr. Sowa at first state orthopedics. He did my surgery in 1999. In my opinion he did a very good job. Since my contraction was so extreme, I had no choice but to have a fasciectomy. I did lose alot of functionality of my hand, but this is just the nature of this surgery. I will need to have surgery again within the next year. I would prefer to have a fasciotomy, I'm willing to bet that Dr Sowa would not recommend it though.

My rationale is that I would like to have a limited invassive procedure that it would get me by for a few more years. Perhaps by then the collagenase procedure will be approved.

I was lucky to be able to partcipate in the collagenase program at SUNY Stoneybrook, and had good success, but since the enzyme does not completely destroy the entire cord/nodule it acts very much like the needle procedure. The remain collagen continues to produce cells and a cord (may) eventually return. Therefore in aggressive disease cases like mine, reoccurance is more likely, and alas it has returned. Unfortunately, I have had my allotment of injections and must find an alternative until collagease is approved.

Dr Hurst(stoneybrook)is the hand surgeon responsible for the collagenase program. He also does conventional surgery, so this may be an option for you if you are in NYC.

03/15/2003 23:57
Mary Beth

not registered

03/15/2003 23:57
Mary Beth

not registered

fasiotomy

To anyone interested, but especially Juli and Wendy,
I would have posted sooner, but our daughter was out
of school Fri., so we took a long weekend away. Let me say
that I am not saying that there is not a place for a full
and aggressive Fasciectomy. For many patients this may
provide what they need. I actually know of two people, our
stockbroker and home owner's insurance agent, who had this
once, a number of years back, no recurrence, good results,
they have no complaints. All patients are not the same
however, and sometimes I think that Doctors forget this.
I do not suffer from DC but my husband does and he has a
very aggressive case of DC. He has had 3 faciectomies in
his left hand and one in his right hand. His right hand
has been far behind his left in the symptoms of this disease
but he now has a lot of contracture in his right hand. His
left hand, after three surgeries is VERY contracted and his
scar tissue is terrible. He also has nerve and blood vessel
damage, lack of feeling and has had two surgeons say that
as his pinky finger goes, amputation is probable. I think
that there is a tendancy for many Doctors to treat nodules,
cords and overall contracture as the disease, when in act-
uality it is not the disease but rather a symptom of the
disease. I can accept that at this time there is not a
known cure for the disease, which could be anything from
genetic cause, weakened immune system that allows the
nodules and cord to develope (just as our bodies can pro-
duce kidney stones, gallstones, keloids to name a few
unhealthy substances. My husband is at a point that an
aggressive, invasive surgery is not in his best interest.
We know that but surgeons do not always agree. That is why
I created this topic about fasciotomy. I think that people
with very aggressive DC need a less invasive option. This
is not rocket science and I don't work for NASA. This is
just discussing an approved procedure for US patients that
is what the Europeans have always known. Surgery in and of
itself can, in some patients, be trauma, which can make the
disease worse. We have recently visited a Dermotologist who
is going to the ends of the earth, or as she put it, "I
promise, I will leave no stone unturned in trying to help
you." to try to gain all of the information she can. (I am
about to create a new topic about this, but wanted to res-
pond to this topic first). The best that I can tell you
right now about fasciotomy is that I have communicated with
Worth Williamson, The Hand Surgery Clinic in Greenville, SC
about surgery for my husband. He has not committed, nor
have he or any of the surgeons he works with examined my
husband, but when I asked about a fasciotomy in my last
email to him he said they were willing to examine my hus-
band and discuss what surgery would be best for him, taking
our wishes into consideration. This may seem minor, but let
me tell you, after all of the Dr visits where we have asked
about why the needle aponevrotomy is not done in the US, if
it can be done, etc and are always brushed off with, this
(Fasciectomy is what you need and all that is available)
I am glad that a surgeon has admitted to us that fasciotomy
is real and feasible. I have noticed that Sean, who is
always there with a response but never with a solution has
not responded with his surgeons name who discussed the procedure
with him, yawn, typical Sean if you read the forum much.
I suggest you ask your doctor about fasciotomy and see if
you get anywhere, I have two that I'm going to ask and I
will let you know. Thanks and good luck!
Mary Beth

03/16/2003 23:20
Sean 
03/16/2003 23:20
Sean 
Fasciotomies

Mary Beth,
I apologize for not answering your question immediately. We have been gone for a few days. Why the derogatory remarks? Why the hostility? If you are looking for a solution about DC from me, I don't have one. It is common knowledge that DC is different for everyone and that everyone acts differently to the different procedures. It is also common knowledge that for some people (like your husband), there are no procedures that will be effective. Fasciotomies are a common procedure and if that is what you want, I'm sure you can get one somewhere close to your location. If you needed brain surgery (or heart surgery), would you tell the brain surgeon the type of surgery to perform? The diathesis of your husband is obviously the main problem for his situation with developing DC and his reaction to surgery. If you don't like what a surgeon tells you (or your husband), go to a different surgeon. Don't get bitter. Each surgeon is going to tell you what has worked best from his/her experience. Almost every website of the different hand clinics around the country mention fasciotomies as a common procedure. They usually say that they are generally reserved for older patients, however, because limited fasciectomies have a track record for providing longer lasting relief (less recurrence) for most people. My surgeon was/is in Colorado and I wouldn't consider mentioning his name on this forum. There is just too much hostility toward surgeons by many who have an unfortunate diathesis.

03/16/2003 23:42
Mary Beth

not registered

03/16/2003 23:42
Mary Beth

not registered

Fasciotomy

Sean,
I am not hostile toward you and apologize for remarks
that are to the contrary. I am only on this forum and have
only posted for two reasons. One is to obviously gain any
information (not cures, I know you or no one else has that)
and to share any information that I have found with others.
This forum should be used for that reason only by all of
us. I also need to say that I do not have hostility toward
Doctors. We have friends who are Doctors and a history of
some wonderful Doctors. My Ob-Gyn, our child's Pediatrician
and many others are tops. The first surgeon who operated on
my husband's hand, a Fasciectomy did a great job, I believe
the best that he could have done and at the time of that
surgery I believe that is exactly what he should have done.
When the recurrence became such that surgery was needed
again he quite honestly told us that he felt that he was
not the person to do it and referred us to someone with
more experience in the field of DC surgery. He dealt with
us with nothing but a desire to get the best care possible
for the patient. I would recommend him to anyone. It has
been with the last two of the four surgeries that we have
become very displeased and have decided to be more assert-
ive with what is to be done and how. Both times skin
grafts were promised, but not done. The last time, when
the surgery lasted approx. 2 1/2 hrs, as opposed to the
approx. 5 hrs of the previous times, and the contracture
was not improved in any noticeable way, we of course lost
all faith in that Dr., especially when 2-3 months later he
said,"We just need to do it again and soon." Obviously we
will not consider that surgeon again. With all this said,
it just brings us to where we are which is, if we are not
the advocate of his problem who will be. As you said, yes
he has an unfortunate diathesis and that is no one's fault.
However the scar tissue, damaged nerves and blood vessels
while quite possibly not being anyone's fault either are
an issue that must be weighed into any further surgeries or
treatments. I have not been active in the forum to the
degree that you and some others are, nor for as long. If
there have been considerable postings on fasciotomy in the
past please direct me to them. I am interested in what
information may be there. I meant what I said in my first
response to you on this topic. It is great that you had
a physician that discussed different procedures. You and
your Doctor obviously made a decision that worked for you
and that is how it should be, regardless of the procedure,
you were informed, educated, and had input. We actually
asked before the last surgery, isn't there something that
is less invasive that can be done just to give him some
relieve, and were told that there wasn't anything except
what had already been done (Fasciectomy) and that some
people just had to have it repeatedly. When I found out
about fasciotomy I was very upset that it was not even
mentioned as an alternative. You are correct that I will
be able to find a Dr. to do just that because I will keep
seeing Dr's until I do. You asked if I would tell a brain
or heart surgeon what surgery to perform. You and I both
know that I wouldn't, however if I were where I am with the
DC, with any other ailment, I would become educated to what
could be done, ask a lot of questions and find a surgeon
that I felt good about. Good luck to you and any inform-
ation that you feel comfortable sharing will be greatly
appreciated. Mary Beth

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Disease   interpretations   Fasciectomy~dq~   Fasciotomies   husband   Surgery   HASIMOTOTHYROIDISM   aggressive   contracture   recurrence   information   Fasciotomy   procedure   surgeon   Fasciectomy   different   Aponevrotomy   approved   surgeons   collagenase