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.
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!!