Suzann hello, the same with me I am the only family member with DD, my mother has lipomas on the arm that does not hurt. Elaine  excuse my for asking was Madelungs the lipomatosis that doesn't hurt or was I thinking of something else? just came home from work and I can't really think of anything now.


Jul 7, 2009 07:40:27 AM, Dercums_Disease@yahoogroups.com wrote:

Hi Desiree,

I wish you luck in the surgery and hopefully the doctor gets all the
tumor (it's important that he does), and that you don't end up with a
seroma (read other's reports of seroma's after surgery and talk to your
doctor about wrapping the area).

We do know that there is a hereditary possibility with DD and Madelungs
and Dr. Herbst has researched this link as well. I am the only member
of my family that has DD, although my eldest sister just had a growth
removed that the surgeon claimed was similar to mine, so now it's
possible that she may have it as well (although I started mine at 31
years of age, she is 53 and just got her first tumors in the last year),
so it's interesting to say the least.

I agree with wanting to be awake through the process as it helps to see
what they are doing and make sure they get all of the tissue necessary,
but it can be painful from my experiences as well, as Lidocaine does not
numb into the deep tissue and if this tumor of yours is of great size
and depth then it's better to be put out - this I know from personal
experience.

I hope you find the answers you are seeking and it's unfortunate that
our children may have to suffer this scourge as well - but it's pioneers
like yourself and the rest of us, that just might make a huge difference
for our own children by bringing these diseases to the public's
attention that will get researching done and maybe find suitable
treatments and possibly a cure by the time our children are of an age
that the disease will affect them.

Again best of luck - do let us know how you make out after surgery and
the docs observations.

Suzann A. Cheney
Administrative Secretary
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994
Web: http://www.clarkson.edu/admission/graduate

-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of PKL
Sent: Monday, July 06, 2009 2:56 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] BIG week for me (and hopefully a big step
towards treatment!)

Hi folks, I just wanted to share what is going on with me in hopes that
maybe it may help you relate, encourage you, but more than anything
encourage ME! LOL This is a big week for me in my battle with DD. Up
to this point it took me from Oct '07 to March '09 to figure out what
was wrong with me, and after 6 doctors incl. 3 neurologists, 2
physiologist and a rheumatologist, I finally found an Internist who
believed me that there was, in fact, something wrong, and TOGETHER we
solved the mystery. My diagnosis came in the form of a c-spine MRI
which indicated I had Madelung's Disease, and from there I poured dozens
of hours of research into learing about Dercum's, how the two are
similar, it's primarily a "sight" diagnosis, family history,
etc....printed out my findings, created a list of all my symptoms incl.
my family medical history (my mother, grandmother and aunts ALL had the
disease!)..and based on previous testing, facts and examination my
doctors gave me the offical d
iagnosis of Dercum's Disease with Madelung's variance and
Lipolymphedema.

Tomorrow I am having a rather large lipoma removed from my right
arm/elbow. The Orthopedic Surgeon performing the surgery is also very
cool and understanding, and was fascinated by my story of this disease
(a big change from the usual doctor response that my problem is I'm
"fat, lazy and crazy!") He's not sure yet just how big the incision
will have to be or how much he will get out, but he is WILLING TO HELP
ME! I already contacted Dr. Herbst and I'm arranging to have a sample
sent to her for her research. The surgeon is also going to take special
notice of what he sees and removes so I don't have to wait for the
pathology report -- I have done extensive research already and am
wishing I could be awake to watch! LOL (Comes from my medical background
as a nurse I guess.)

In addition to the surgery tomorrow, on Wednesday I have an appointment
with a Genetics doctor who agreed to see me and run tests. Like I
previously mentioned, I am 99% confident that for me this disease is
genetic, passed down from my grandmother to my mother, to me and most
likely my 2 daughters (ages 11 and 9, the oldest is already exhibiting
similar signs and growth patterns that I had.) I'm determined to find
out as much as possible about what I have in hopes that it makes it that
much more possible to find a way to treat it, and hopefully slow down
the progression.

Now why is this a big week for me? For me personally, this is a step of
validation of the disease, and an opportunity to show other surgeons how
my body reacts and heals. I am facing other doctors and surgeons who
are too afraid to treat me because of my health even though I personally
KNOW what my body is capable of handling. I have to prove I can have an
invasive surgery with removal of fatty tissue, heal quickly without
infection or complications, have no issues with general anesthesia
(because God forbid a person who is overweight ever have surgery! LOL )
so that way continue getting the proper treatment I need to regain
mobility, energy, and reduce pain. All that said, I am excited and
looking forward to regaining full use of my right arm (hopefully.)

Ok, thanks for letting me ramble! LOL No one knows or understands
exactly what I go through or feel, no matter how much they try...but I
know that the members of this group DO, and can relate to my struggles,
battles, fear, excitement, and small triumphs. Writing this has helped
me stay focused and positive...and that helps conqueor FEAR!

God Bless!

Desiree Heck

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