The “maintenance” therapy for my lymphedema includes wearing a compression sleeve + gauntlet. However, since the majority of my lymphedema is in the hand, my therapist added a little pad under the gauntlet, in the back. All this seems to work fairly well at keeping the swelling at bay.
Last weekend we went skiing, and I could not fit the little pad in my ski mittens. So, I left it out while skiing. And then I misplaced it, so did not wear it at all for a couple of days until it turned up. By the end of the weekend my hand was definitely puffier than it should have been.
This is all a long way of illustrating JUST ONE of MANY WAYS in which this lymphedema thing sucks.
During the height of my chemo, I’d set up a news alert for “cancer.” At this point I’m moving on from that (did I mention that I’m DONE???), so I’ve deleted that alert and replaced it with one for “lymphedema.” This week I spent several hours simply surfing the web for more information and treatment options. I REFUSE TO ACCEPT that I have to wear this stupid sleeve and gauntlet for the REST OF MY GODDAMN LIFE!!!!
My web research has been fruitful. First I found some articles written by a plastic surgeon in Dallas who performs two types of micro-surgery to improve lymphedema. He has a clinic right next to Love Field and encourages patients to come from afar. I’ve already exchanged emails with him. Today I dug around some more. I discovered an upcoming lymphedema surgery conference in Barcelona next month. No, I don’t plan to attend the conference (I’m tempted, but I’m not gonna perform the surgery on myself, after all…), but the website was useful, because down at the bottom it includes a list of all the invited speakers and what country they’re from. I Googled each one who is US-based, and I now have a list of about ten doctors based in the US who do some form of lymphedema surgery. Jackpot.
More Googling. I have found articles that describe positive outcomes for these techniques. The two most common techniques are “lymphovenous bypass” and “vascularized lymph node transfer.” The latter seems to be most effective and is usually performed at the same time as breast reconstruction. Time seems to be of the essence.
I’m still in the early stages of digesting all this and considering my options. I will be talking this through with lots of people (my current therapist; other lymphedema therapists; my own plastic surgeon, who does not do these procedures; other doctors; etc.). And I will keep Googling.