Middle of the Night Surgeries, Not Recommended

Through the rest of high school, after my first round with cellulitis, I was compliant with compression, saw the vascular surgeon once a year, continued swimming (no I did not tell my parents about the box jumps and running that could be part of dry land workouts), and more or less had a pretty normal high school experience. I always wore long formal dresses so my compression wouldn’t show. I continued to sing, and I was pretty good at it. I headed off to The University of Tulsa in Tulsa, Oklahoma on a partial vocal music scholarship after I graduated.

Now, I was burned out on swimming, but Tulsa had a Crew Team that was recruiting athletes of any kind who wanted to try rowing. Of course, I would go try this out. I loved it!!! I just didn’t tell my parents about all of the running involved with being on a crew team. I was 6 hours from home by car, an active collegiate athlete, on a vocal music scholarship. I was living the good life.

I had started experiencing some shin pain, shin splints, in both legs from all of the running, not surprising since I hadn’t run much. Learning to get boats out of the water and over our head to carry back to the boathouse, I took an oar to my lymphedema shin. To this day, I don’t know which of these two things caused what happened or if it was a combination of both plus having lymphedema.

One evening my leg started to really hurt, worse than cellulitis! I called the athletic trainer, they were getting ready to travel with the football team, I was told if I was really in that much pain to just go to the Emergency Room. I found a friend with a car, I was struggling to walk at this point, my foot didn’t want to lift up so I was tripping on my toes, and my friend took me to the ER.

I sat there, I mean it didn’t look like an emergency, for hours. Finally, I was taken back and seen. The doctor recognized right away that I had Acute Compartment Syndrome. He explained that the muscle was swelling inside the fascia (a tight membrane around the muscle on the outside front of your shin) and the swelling was pinching off nerve function and blood flow to the muscle. They needed to operate to open that compartment or I could have permanent damage.

I freaked out, number one rule for any lymphedema patient, don’t cut, poke, or scratch your lymphedema leg, much less have surgery on it in the middle of the night!!! I tried to argue, I made them call my vascular surgeon back in Des Moines. The vascular surgeon agreed that the risk of not having surgery was a much greater risk than the surgeon cutting into my leg. I am 6 hours from home, my parents are in Des Moines, Iowa, I only have a friend with me at the hospital, and I am headed into surgery on my lymphedema leg, in the middle of the night, at the age of 18.

Amazingly, the surgery went fine, the doctor took precautions and I had a couple of rounds of strong IV antibiotics before I was released from the hospital the next day. My leg was extra swollen from the surgery because of the lymphedema, but I had no permanent nerve damage to the muscle that pulls your toes up when you are walking. I did much of my rehabilitation in the pool doing water jogging. I don’t know (I never asked) if this was because the ATC researched lymphedema and knew being in the pool was great for lymphedema swelling, or if that was how they would have had me rehab my leg anyway. (I still didn’t realize how good being in deep water is for lymphedema)

I seemed, and still to this day seem, to not have any long-term complications to my lymphedema from this middle of the night madness when I was 18. At the time I wondered if it was the running that had caused this, because of my lymphedema. I would wonder this for a long time to come. I still don’t know if the combination of the deep bruise, running, and lymphedema set me up for Compartment Syndrome or if this would have happened anyways. What I do know is that I run now, I have run a half marathon, I run 5K’s, and I have not had a recurrence of the condition.

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What I Did Right, And Didn’t Even Know

After being diagnosed with Lymphedema (LE) I really believed that what I was dealing with was cosmetic, my fault, and as long as I didn’t pound my leg and wore the ugly knee high everything would be okay.

Luckily, I was a swimmer who did both swim team and synchronized swimming. I was diagnosed with LE at the end of May and started swim team and synchro again the 1st of June. My leg quickly returned to normal, and I wore the ugly knee high, some. Most of the time, once the swelling was down, I didn’t have much swelling. I believe that one summer, and my love of swimming and being a swimmer in high school (spending 3-5 hours a day, 5 days a week, in the pool in girls swim season and 2 hours in the pool 5 days a week, in the offseason) is the main reason why my Lymphedema has remained mild. (That and maintaining an active lifestyle as an adult)

What I didn’t know then, that I know now, is that swimming especially deep water exercises like synchronized swimming are one of the best therapies for Lymphedema. Water is the only thing that will conform perfectly to the contours of your body. Water naturally applies graduated compression, the deeper you are the more pressure. So water can provide the only perfectly shaped evenly distributed graduated compression to your limbs. This compression is what all compression garments are trying to mimic, but they will never conform perfectly to all the contours of the human body like water can.

The second best thing about all of this is I was moving, a lot! Lymph fluid is very thick and sludge like. It carries the garbage your body doesn’t want in its cells away from them. Movement of your muscles causes a pumping action to the lymph system that helps to keep that lymph moving. So I had the perfect compression, with hours of movement almost every day!

I was also very active in band and chorus, perfecting diaphragmatic breathing. Deep breathing is also very good to help keep your lymph moving. I was in marching band and concert band, I was in multiple choirs. Without even knowing it, I was doing Lymphedema exercises, while doing something I love.

None of this information was shared with me at the time of my diagnosis. These were things I was doing because I was an active, athletic, involved in music, 14-year-old! I was doing all of the best things someone newly diagnosed with Lymphedema could do for themselves, and loving it! (Okay, so I wasn’t great about wearing compression every day back then, my leg didn’t seem to need it, as it hardly ever swelled anymore.)

The part of me that will always identify as being an athlete, who just so happened to self-select swimming as my sport of choice, set me up for a lifestyle that would keep me active and doing many of the right things without knowing it, for a long time to come.

Movement is a lymphie’s best friend. Sitting still, not moving, is a lymphie’s worst enemy.