National Lymphedema Network Lymph e-Channel, March 2013

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National Lymphedema Network
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Lymph e-Channel vol. 6

March 2013

In This Issue

· Welcome
· Doctor's Article
· Patient Perspective
· New Product

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Patients: We want to share
your stories!
Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!
All submissions should go to robin@lymphnet.org [mailto:robin@lymphnet.org].
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Help Spread Awareness!
The NLN is creating FREE Lymphedema Educational Kits for all patients at risk for
lymphedema. Please help us raise money for the campaign by creating your own page
and spreading the word. It only takes a minute!
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NLN's Support Community
Looking to correspond with others who have lymphedema? Look no further than the
NLN Lymphedema Support Community sponsored by inspire.com
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Position Papers

Exercise [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVu8Cwo8T03rmhC0FW3ESkOFlDO0x3efWGjMljX36v7LPWoQ88tW9O0_BJtiUVsFDnwnDGbB8SE-zg9LSMaRNWMIOGdgApUkETzzUP9azCvDBPGl4yyzw7_C0BII8VPvGcgelGMtGvbJmw==]

Risk Reduction [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVsMhRkgl-ZnY79LPNFTXmSvFN3IOCuC_mZFsGiHMz49xSBtQd1viCKCHqY_aS6-1CcFvmc5QWtVOFCJ42TCTbrLqpaSRX4_0322CsBV0flIrAnsMpgPukEO_-7zbnWhjEyovmRFQf6-Ocsbj3HZglPnjMWPgwBeHmU=]

Diagnosis & Treatment of Lymphedema [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVuCByHkS3mkal7R3xxMO9Qx4OYnHKi82HhKsRYXNpDhghCe5EymSHoBzlWqvChbyZkGc4YKtRMfEpnCqmlcfwRXC2jTuMK4GKw9Z36R_JSzZ3MZdNm3eshdVhsjKbEuITggO3GHZZl0gg==]
Breast Cancer Related Lymphedema [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVuCAB7rzJK5ven3XP9z93IbRjzObrfIVd9kY_jGUKsFzYd65sGJONBlEUnYZyjxZqANs9Bf5OoWKUb4jk5zlJXx5UQLwNZnyqjPTU-XEyM2G5nvE0amOltKN-R5pO5GoN8=]
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Quick Links
National Lymphedema Network [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVtglqqk9zIQlEJX_W3E4x9PR-tg-2dLg-5Q6WAYqUADcYf3Lm86v28eSmukuxOKEqiQ2sscEZfd7tEFVKXwZKC8IAWMqvROSs9WeQ1_-e6UwQ==]
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Welcome to Lymph e-Channel

Dear friends of the NLN,

We are pleased to feature an article on surgical options for LE patients in this
issue of e-Channel. Discussion is brisk among many members in the lymphedema community
regarding surgery. The Oncology Times published a review of Dr. Jay Granzow and
Sarah McLaughlin's Point Couterpoint Session at the 10th NLN Conference in 2012
- Should Surgery be an Option [http://r20.rs6.net/tn.jsp?e=001iQlZLAVYlVsEc6y0wW73P7Pjx8W1kRvmjsHO7j_C3UT7d6Kz5UcRcTq_cbc1WxN4_zEj9ool29hqremYwbseS9u4cwCckAzHa2oofP9RNGzTvM7vDusOcl6CXThFN1-GtWHqacBizy1DNauTsAPaVqBDNGVjA8pPH01r4fXJhjj8xAmnKWsXJsc45sE4RtvqI12c51yg4pZXqdqR9Q_tsA==].

Surgical interventions for lymphedema is still in it's infancy and at this point
there is minimal evidence to support these techniques. We have yet to understand
why one procedure works for one patient and not for another. However, there are
a handful of plastic surgeons nationwide that not only have an interest in these
techniques but are already seeing positive preliminary results from their surgeries.

We are fortunate to have Dr. Jay Granzow share his knowledge of various surgical
procedures in his article. He is clear that every patient needs to be closely evaluated
and that surgery is not necessarily the answer for every lymphedema patient. He
emphasizes the importance of working closely with a certified lymphedema therapist
before and after surgery.

A special thank you to the patients who bravely shared their experience and outcomes
of their surgery. They both continue to do well and provide hope for other patients
today and in the future.

Enjoy our March e-Channel and as we move further into the Spring season, I hope
you take advantage of the extended daylight hours.

Kind Regards,

Saskia R.J. Thiadens, RN & NLN staff
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Surgery To Treat Lymphedema

By: Jay W. Granzow, M.D., M.P.H., F.A.C.S.

Significant medical advances now allow surgeons to offer safer and more effective
procedures to treat lymphedema. Modern surgeries, such as lymphaticovenous anastomosis
(LVA), vascularized lymph nodes transfers (VLNT), and specialized lymphatic liposuction,
performed by surgeons trained in lymphedema surgery and microsurgery, provide better
options to treat patient with different lymphedema symptoms and levels of severity.
Appropriate surgery can help reduce the size of an affected arm or leg, decrease
the requirement for compression garment use and greatly reduce the occurrences
of dangerous infections or cellulitis.

Choosing the proper procedure to best treat each patient is critical, and no one
option is right for every patient. These surgeries are performed only by a small
handful of highly specialized surgeons worldwide. A qualified doctor must have specialized
training and experience in performing lymphedema surgery as well as a thorough understanding
of the lymphedema therapy required by lymphedema patients.

Close coordination and treatment between the surgeon and a trained lymphedema therapist
is essential. Complete decongestive therapy (CDT) and compression garment can significantly
improve lymphedema symptoms, and should be employed before proceeding with any type
of surgery.

The Functional Lymphedema Operations (FLO) System is the first comprehensive lymphedema
treatment system to encompass the modern lymphedema procedures of VLNT, LVA, lymphatic
liposuction as well as specifically tailored care and therapy for lymphedema patients.
These procedures are different from older, disfiguring types of surgery, such as
the Charles Procedure, which are no longer recommended.

Lymphedema has both fluid and solid parts. The compressible, fluid part can be treated
best with LVA or VLNT to drain the fluid. These procedures can reduce or eliminate
the need for compression garments and may reduce excess volume in the affected arm
or leg.

LVA involves direct connections between the lymphatic vessels and the patient's
veins using specialized microsurgery. Tiny connections (just a few tenths of a millimeter
in diameter) allow trapped lymphatic fluid to drain directly into the veins. Most
patient have moderate to good improvements in their symptoms, and the risks of this
type of operation are very low.

VLNT involves the transfer of lymph node-containing tissue from one area of the
body to another. The surgeon releases scar blockages during surgery, and lymphatic
drainage improves as healing progresses. I have seen dramatic and even complete
reductions of lymphedema symptoms in some of my patients. However, some clinicians
have observed a small risk of new lymphedema in the donor area from which the lymphatic
tissue has been borrowed. Personally, I have not seen this problem in any of my
patients. Careful selection of a surgeon experienced with VLNT surgery and proper
lymph node harvesting can greatly reduce this risk.

Specialized lymphatic liposuction can reduce the excess volume of solid, such as
fat and protein, which have built up in many patients with chronic lymphedema.
The solid volume may be soft or firm, but cannot be reduced significantly with conservative
treatment such as CDT. Lymphatic liposuction safely and effectively removes this
solid tissue to reduce the excess volume. More importantly, this procedure has
shown to drop the risk of lymphedema infections by 75%.(1) The risks of this lymphatic
liposuction are low, but patients must use compression garments continuously after
the surgery.

For some patients, the option now exists to have VLNT or LVA surgery afterwards
to potentially reduce the long-term need for compression garment. It is critical
to note that specialized lymphatic liposuction is drastically different from cosmetic
liposuction and should not be performed by surgeons proficient only in cosmetic
liposuction. To be safe and effective, this procedure must be performed by a surgeon
who has training and experience specifically in lymphedema treatment and lymphatic
liposuction. In addition, such a surgeon must also work closely with a lymphedema
therapist trained in this procedure in order to properly provide appropriate care
for the patient after surgery.

(1) Brorson H, Svensson H. Skin Blood Flow Of The Lymphedematous Arm Before and
After Liposuction. Lymphology 30 (1997) 165-172.

info@PlasticSurgery.LA [mailto:info@PlasticSurgery.LA]
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Lymphedema Patients Share Their Surgery Stories:

My Lower Extremity Lymphedema

by: Patty, Lomita, CA

Lymphedema progressed up my left leg for thirty years with swelling, infections
and pain that increased as my leg grew larger and larger. Doctors said there was
no cure. Twenty-five years ago, I tried surgery that is no longer commonly performed
that resulted in a big leg with scars down the sides more prone to infection than
before. My leg always felt tight and the only relief was to keep it elevated.

Pain when standing became a daily reality. I continued tennis and biking for a while,
but as the swelling increased I stopped doing those things. I could not kneel to
work in my garden and had to be careful to avoid cuts and scratches on my leg.
Frequent cellulitis infections required hospitalization and endless days of elevating
my leg above my heart. I fought depression and gained weight.

The emotional toll of my lymphedema was as painful as the physical symptoms. Entering
a restaurant or meeting strangers became a trial as I watched their eyes travel
to my leg and linger there. I hid my leg when a camera was near. As my leg ballooned
out, well-meaning friends would say, "Surely there is something that can be done.
Maybe you should try a new doctor." How frustrating it was to repeat over and over
that there was no cure and nothing new to try.

I wore long skirts and loose pants to hide my leg and avoided swimsuits and shorts.
Clothes shopping had been my favorite pastime, but I dreaded going to the mall where
all I could find were sweats and big stretchy pants. Clothes that fit were functional,
but neither flattering nor fun.

I worried that I might lose my leg and it took effort to keep a positive outlook.
I made myself sit by the pool at the resort no matter how many people stared. I
found hobbies that I could do with my foot elevated. Computer games and cards replaced
outdoor activities. I thought my leg would never get better and decided to just
live with it.

Two years ago my husband read an article about Dr. Granzow's work with lymphedema
patients and asked if I wanted to call and find out about the surgery. I refused,
but I saved the article and looked at it once in awhile. I began to hope this new
surgery might help so I finally called Dr. Granzow and had lymphatic liposuction
a year ago.

The transformation of my leg and my life is amazing. I can sit through an entire
movie, ride a bike, kneel in my garden and walk for miles. I no longer try to hide
my leg for picture-taking. Losing weight is easier and clothes shopping is a joy.
I am almost pain-free and thrilled with the changes in my leg. I require compression
stockings to maintain the size reduction after surgery. Therapy visits are still
important, too. The greatest gift from the surgery is that sometimes I forget about
my leg; it is just down there doing its job.

LYMPHEDEMA SURGERY??

by: Shelly, La Canada, CA

Like a lot of you, I have lymphedema. My breast cancer surgeon removed 40-50 lymph
nodes and 12 of my lymph nodes were positive for cancer. Although I'm thankful that
he did, I'm not happy to deal with lymphedema. I noticed the first symptoms of lymphedema
while I was still undergoing chemotherapy and immediately sought a therapist who
started manual lymph drainage and was prescribed a sleeve. I even wore the sleeve
during radiation treatments. After all my treatments were over, my arm swelled so
much that I had to remove my wedding rings and wore shirts 2-3 sizes larger to fit
my arm. I tried compression therapy and the 10 rules of lymphedema with little success.
I even tried alternative medical treatments, but nothing was working. But I refused
to give up.

Then a friend of mine sent me an article about a doctor in California, who was performing
3 different surgeries to help alleviate the problems of lymphedema. I was amazed.
Surgery would help lymphedema? My therapist told me that compression therapy and
MLD were the "gold standards" of lymphedema care. But here was a doctor that was
doing new things. I was taught from day one not to even get a scratch on my arm
and now here was a doctor talking about surgery. Wouldn't my arm swell even more
with incisions and the stress of surgery? Was there a possibility that this could
work for me?

I scheduled a consultation at Dr. Granzow where he took my history, measured my
arm and tested for pitting and fluid movement. He told me of the different procedures
available to me that would give me the best outcomes. His goal was to reduce my
arm in size and thought that maybe one day I could go without a sleeve. He told
me that every patient's lymphedema is different and requires a different surgical
approach. He gave me such hope!!

I chose to do 2 surgeries! The 1st surgery consisted of lymphedema liposuction,
which reduced the excess fluid in my arm and months later, the 2nd surgery was a
lymph node transfer into my armpit. After the 1st surgery the reduction in my arm
shocked me!! I was immediately put in a custom made sleeve and gauntlet the same
size as my uninvolved arm to guarantee the reduction of size. For the first time
in 5 years I fit into normal size clothes. Dress shirts - no problem, coats - no
problem, even short sleeves and sleeveless - no problem. What a thrill! I felt
normal again. But I was still tied to a sleeve. After the 2nd surgery I felt the
heaviness of my arm leave, my range of motion improved, and the constant tightness
disappeared. I could experiment with the sleeve and tried going without it for periods
of time. After 1 year, I now only wear the sleeve at night and when I exercise.

My arm's volume reduction is 85% and it is nearly as small as my uninvolved arm.
Having both surgeries has definitely improved my quality of life. I am now enjoying
all of the active sports I love - even golf!!
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medi 550 Flat knit trend colors and patterns

Color your life with the fresh shades of mediven mondi and mediven 550 flat knit
leg garments: five trendy colors and three design elements in made-to-measure garments
created to effectively manage lymphedema. The advantages of cotton and latex-free
flat knit garments include wrap spinning with polyamide that allows the production
of a thin, knitted fabric that's able to exert maximum pressure stability throughout
the day. The products also wick moisture and are more breathable, allowing the stockings
to dry quicker. medi flat knits can also be machine washed and tumble dried for
easy use. The daily wearing of the garment is so comfortable that high treatment
compliance is achieved from the beginning. These benefits will lead to significantly
greater therapeutic success.

Therapist review: Claudia Steele-Major, PT, CLT

CCCC - Lymphedema Program

Ventura, CA

Colored co

mpression garments have become a much welcomed alternative to the skin-toned, "medical
looking" traditional garments.
Many of my patients find their individual personalities and spirits reflected in
the color of their garment and use it much like any other fashion accessory to
express their style.
As a therapist, it gives me great pleasure to offer a colorful, fun alternative
to a traditional, medically necessary, garment that will greatly increase the patient's
willingness to explore her options. Once the garment has been selected, it significantly
enhances compliance with the donning schedule, as well as encourages the recommended
frequency of garment replacements in order to ensure adequate compression.
Not all women like to draw attention to their lymphedema and will choose a neutral
or skin-toned variety over a colored option; however, the fact that choices are
offered can provide a sense of control during a time when life seems out of control.
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National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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The inclusion of advertising, logos or Web site links within this electronic publication
does not constitute an endorsement by the National Lymphedema Network, Inc. of the
products or services so advertised.

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