Complications of Lymphedema Debulking Surgery

[patoco]

Complications of Lymphedema Debulking Surgery

Our Home Page: Lymphedema People

http://www.lymphedemapeople.com

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I originally put this in as a response to question from a member on debulking surgery. Felt that it should go in too as a seperate item as it is so important and because doctors are still trying to con people into having them.

I absolutely urge you all never ever let any doctor talk you into
having this done.

I'm going to share a post I put on Lymphedema People in response to
someone who wanted to know exactly what the complications of these
surgeries are:

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Hey Gary

Been meaning to post on this.

I had three debulking surgeries done on my left leg in 1971, 72 and
73. The one I had is called the Thompson's Dermal Flap surgery. In
this the leg is cut from above the hip all the way to the big toe.
After it is debulked, a flap of skin was folded into the muscle,
under the theory that it would draw fluids into the deeper
lymphatics and be carried away.

So much for theory and trust me the scars are the least of our
worries.

Here are some of the complications I have encountered.

1. Massive, permenant nerve damage. Parts of my leg are so nerve
dead you could literally put a knife into and not feel it. Other
parts are so sensitive that even to touch it feels like your digging
into it with a shovel. If my knee itches, I scratch my thigh.

2. The swelling will return. Can you imagine trying to have MLD with
this kind of nerve damage? And because the leg is so disfigured,
even wearing compression garments is a challenge. So when the
swelling returns you may well be stuck with it.

3. Fibrosis - mind you both legs have lymphedema. But it is the one
that I had the debulking surgry on that is a complete mess and write
off. It is like a chunk of granite. Ulstrasounds just bounce of it.
It really hastened the tissue hardening.

4. Infections - because of the hardening of the tissue, infections
have become almost uncontrollable. Forget oral antibiotics when they
hit. The oral ones simply are unable to penetrate adequately the
tissue. Bacteria go into wonderful little hardened areas where they
are safe. My infections are now only controllable (notice I'm not
saying curable) by intense IV antibiotics. Even as I sit here, I am
on them yet again. Last year they had to install a chest port
because lymphedema started in my left arm and my veins are shot from
so many IV's.

Another thing about extreme fibrosis is that it eventually starts
crushing your blood veins and arteries, which also sets you up as a
prime candidate for a blood clot. Mind you, because of this a clot
is going to be almost impossible to diagnose because no radiology
test is going to penetrate the leg.

5. Skin changes - Even an elephant wouldn't want the skin on my left
leg. Despite the consistant use of lotions, it is terrible. I now
have extreme plaque formation and lots of papillomatisis.

6. Here's the scariest one and one I have bunches of questions on.
My first type of lymphoma started in that left leg. I had a 1 1/2"
spot on the back of the calf which turned out to be mixed B cell
lymphoma.

This was treated with eight weeks of daily radiation, which did
further damage. It was also a crap shot because there is another
cancer associated with long term lymphedema. If you combine
extensive fibrosis, infections and radiation you become a prime
candidate for something called lymphagiosarcoma (Stewart Treves
Syndrome) The average time from diagnosis to death is 6 months. It
is not stopable.

For the lymphomas, chemo was immediately ruled out. Chemo drugs are
meant to destory tissue...can you imagine what would happen if chemo
drugs filled a leg that was not able to eliminate them? Not a pretty
picture.

7. Skin grafts - I had to have several skin grafts to close up areas
where the skin didn't heal, but instead died. One of those spots was
the size of your hand and it took using skin from a cadaever
to "seed" the subcutaneous tissue to close the wound.

The surgeries are also brutal. Each one was a nine hours ordeal that
took 8 - 10 pints of blood. Honestly, between you and I (LOL and the
internet) the way things are now with the safety of the blood
donations in question, I wouldn't even think of doing it.

One of our other members was talked into having one done last year.
His experience has been the same - the surgeries really caused him
much grief.

So all in all, I say run from these and any doctor who proposes it.

The best, most effective and safest treatment is manual decongestive
therapy.

Hope this answers questions.

Pat

............

From Silkie

They Did this to Pat---the boy

the consiquences to live with Are Pat's -----The Man

This should be on every browser
in every book
in every medical book

But actually i suspect it is buried deep in files in some hospital

and They are still doing the same procedure with the same
horrific consiquences

FOR GOD SAKE LISTEN

Silksxxxxxx

[patoco]

Here's a scary one. Again another debulking surgery. It is almost
ridiculous to me...of course any surgery where you strip out masses
of tissue from a leg is going to reduce the swelling.....think that
is a duh moment.

It's the long term complications that are literally the killer.

My response remains this page.

It is amazing that many of us had the Thompson's Procedure done. This too was suppose to be the end-all of lymphedema surgeries. Thus far, I have not been able to find any follow up study one any of us and the horrible complications that we have had to endure.

- - - - -

Radical reduction of lymphedema with preservation of perforators

Ann Plast Surg. 2007 Aug

Salgado CJ, Mardini S, Spanio S, Tang WR, Sassu P, Chen HC.
From the Department of Plastic Surgery, E-Da Hospital/I-Shou
University, Kaohsiung County, Taiwan, ROC.

BACKGROUND: Surgical management of lymphedema of the lower extremity is indicated in select patients when conservative measures have
failed. The excisional approach has traditionally consisted of a
staged excision procedure or total excision of diseased tissue. Based
on an improved knowledge of vascular anatomy and understanding of
perforator flap surgery, radical reduction of lymphedema with
preservation of perforators (RRPP) applies an excisional approach and
microsurgical principles to the radical reduction of lymphedema.

METHODS: Fifteen patients underwent RRPP during the period of June 1993 to February 2002 and were included in this study. Medial and
lateral skin flaps were raised through incisions on the anterior and
posterior leg, preserving a 4-cm skin bridge in the central portion
of the incisions. The skin flaps were reduced to 5 mm in thickness,
except in the vicinity of the lateral and medial septae, which
contain perforators from the posterior tibial and peroneal arteries.

RESULTS: At an average follow-up period of 13 months, a statistically significant reduction in lymphedema was achieved (P < 0.05). The average percentage in reduction above the knee was 51%, below the
knee 66%, at the ankle 44%, and at the level of the foot 41%. The
average overall lymphedema reduction for the patients was 52%. There
were no cases of wound breakdown or skin flap necrosis. Complications
consisted of cellulitis in 3 patients and seroma and hematoma in 1
patient.

CONCLUSIONS: Based on angiosome principles and application of
perforator principles to the surgical reduction of lymphedema,
effective, long-lasting, and cosmetically appealing results are
achieved in a single-stage procedure.

PMID: 17667412 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/sites/entrez?
Db=pubmed&Cmd=ShowDetailView&TermToSearch=17667412&ordinalpos=2&itool=
EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

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Pat O'Connor
Lymphedema People
http://www.lymphedemapeople.com