National Lymphedema Network
 Lymph e-Channel vol. 6March 2013  
In This Issue
· Welcome
· Doctor's Article
· Patient Perspective
· New Product

Patients: We want to share  
your stories!


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a short paragraph of
your experiences with lymphedema and a picture for us to publish!

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Position Papers


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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.

 

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 

 

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

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!!

 

 

 

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. 

 

 

 

 

 

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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