Beyond the Diagnosis: Building a Future with Lymphoedema

Beyond the Diagnosis: Building a Future with Lymphoedema

After the most thorough and informative consultation I’ve had so far, I’m finally starting to feel optimistic about the direction of my treatment. Following months of self-management and no medical appointments, this session offered clarity, reassurance and a much-needed sense of progress.

For the first time, I now have a detailed understanding of my condition, tailored specifically to my case. I’ve been taught how to perform simple lymphatic drainage (SLD) at home, a technique that involves gentle massage not only on my affected leg, but across my entire body, beginning at the neck. These rhythmic, directional movements help stimulate lymph flow through the body’s major lymph nodes. The aim is to create more capacity in my lymphatic system, so that the fluid in my leg has somewhere to drain. Ultimately helping to reduce the swelling.

In addition, I’ve been scheduled to start intermittent pneumatic compression therapy (IPCT) and leg wrapping. This involves beginning with SLD, then placing my leg into a large inflatable boot that applies controlled air pressure to encourage fluid movement. After each session, my leg will be tightly wrapped with compression bandages for two weeks with intermittent therapy in between. I’ll attend four appointments over this period. The goal is to achieve a lasting reduction in swelling, ideally allowing me to transition into a smaller, more manageable compression garment.

I’ve also been referred to the Oxford Lymphoedema Practice to explore the possibility of microsurgery as a long-term solution. However, before surgery can be considered, I’ll need both an indocyanine green lymphography (ICG scan)/fluoroscopy and a lymphoscintigraphy scan to map out the specific lymphatic dysfunction. Unfortunately, these advanced scans are rarely accessible through the NHS due to cost and complexity but there is potential to pursue them through private healthcare. This is a step that could significantly accelerate and enhance my treatment options.

In the meantime, I’ll continue with daily self-management and the new techniques I’ve been given. After such a long wait, it feels empowering to finally have answers, a plan and a renewed sense of direction for my leg and my life.

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