First consultation with an NHS specialist
I wanted to just jot down how my consultation went today, because I didn't really know what to expect. Not saying everyone will have the same experience, but if you love info the way I love info this might help.
I met with the specialist this morning for about 90 minutes. I had the referral back in January but haven't been able to get an appointment till now. I'm in South London.
She talked me through the differences between Lymphoedema, Lipedema, Venous Insufficiency and Hyper mobility - and that they are often experienced together.
Asked what I hoped to get out of her clinic. (I said greater comfort in my body).
Took my details and vitals, and asked about my pain and bruising and history of the issue, in me and family members. Asked me about medications I was taking, and my medical history, and talked about treating the whole patient holistically and not just a condition. She asked what I was already doing for my legs (I said dry brushing, mini trampolining and walking), and she talked to me about eating a low-inflammation diet.
Sat me in a chair like a dentist chair, and popped my legs up. She looked over my legs, poked softly in a few places, felt my skin and pinched my toes (Stemmer sign). Toes were pinchable. Varicose veins were prominent in a number of areas.
She said I clearly have both lymphoedema and lipedema, and likely am also hypermobile and certainly have varicose veins. She showed me how to identify the areas of lympheodema and those of lipodema. She showed me how to massage my legs to clear some of the fluid and told me to alternate the days I do that with the days that I dry brush them. And she showed me a large model of the lymphatic system and the direction that massage needs to go in different places.
She showed me how to do lymphatic draining massage, and silicone cupping therapy with baby oil. And how to use Kinesio tape to support drainage and hypermobility in my knees. And told me where I could buy these things on Amazon.
She took measurements of my arms and legs, and we discussed compression garments. She ordered me a pair of Lipoelastic active leggings to wear during the day, and Juzo SoftCompress thigh-high socks for night time - both NHS prescribed. There is also another type by Juzo, with the same technology behind the soft compress garments, but for the day time. It’s not officially available on the NHS yet but the Juzo rep had asked if this practitioner had anyone who would benefit from trialling them, so she has put me forward. It should take 3 weeks or so to receive these garments.
I asked about pressotherapy machines, she said they have some and lend them out for 6 weeks at a time, but was collecting them all back in at the moment for their annual servicing. So I might get some to try in the future.
Then I did a L-Dex scan (https://www.impedimed.com/products/fluid-tissue-applications/l-dex-analysis-for-lymphedema/) to identify my body composition stats, and the presence of Lymphoedema. Actual confirmation. There wasn't a way to send me the results, so she allowed me to screenshot the results.
Then she gave me some documentation on lymphatic drainage exercises for the lower and upper body (and showed me which one to avoid due to my hypothyroidism). Gave me a brochure with links to various other resources for information, and let me know she is hoping to start a local support group soon. I’m due to see her again in about 3 months. Oh, and she’s writing to my GP to invite the surgery to training on Lymphoedema and Lipedema.
In all I’m really happy, I didn’t know what to expect going in, but after a lifetime of medical gaslighting about my legs (you just need to lose a bit of weight and you’ll be fine 🙄) it was wonderful to have some confirmation.
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Edit: Edited to say I'm not trying to gate-keep the name of the consultant but I just didn't want to plaster her details across Reddit without her permission. So anyone looking for them, DM me and I'll give them to you ♥️