lymphodoema Clinic - What actually happens

[uglyfeet]

Hello,

I'm wondering if anyone can share experience of what happens in this clinic at first appointment? how long does an appointment take in length on the day?

I've tried joining support groups elsewhere for the condition but seems my situation is not understood (don't blame them, I do not get it either) or someone replies who is in the US where it seems different process.

Sorry I'm just fed up it has now ruined my life from new job opportunities lost to hobbies that involved the local leisure centre.

I had an unplanned operation on my lower limb earlier this year, (which in the absence of any proven reason) has become my hypothesis that this surgery was a result of left untreated lymphodoema with the backing of at least one GP from my surgery.
I still have a fat pad of limb so being sent to clinic albeit I'm already in compression as a result of post surgery wound care.

My questions,
Will they open compression dressing? A relative say's they won't but it blows my mind if they don't take a look and diagnose lymph blind?

I did since ask someone medical what happens in the event they say no this is not lymph but I was I would then end up going back to the GP. Over the months there has been many suggestions fired around like its the heart or kidneys affected with the swelling seen.

I also have an open wound that hurts like hell (unsure if symptom of this lympheodema) which the last medical professional said in their opinion is an ulcer which could take 2 years to clear (what the hell) so I cannot envisage how lymph message of area is really going to work. My Mother thinks physio is going to be some sort of wand, but I've kept up doing a little walk every day since out of hospital and largely kept my feet elevated but nothing gets rid of the fat pad.

Can I ask for a referral to pain management clinic?

Can I wear wraps or other compression garments with an open wound?

I figure liposuction (even if private) is out of the question, due to the possible past operation scarring?

I've ended up with wraps before reaching the clinic and had my full nhs prescription entitlement portion for the next 6 months so the clinic wouldn't be able to issue any more? (or I pay)

Thank you for any help, I also sense it may vary from area to area as the clinic appointment letter say's we can discharge you on the day with a pathway of treatment. Leaving me wondering who measures you every 6 months for the garments. (my gp practice does not hold the tender for compression dressing as it is)

I don't know in the slightest and hope someone who does will give you useful info.

However, I did want to recommend writing down all you questions and concerns as bullet points and taking them to your appotment. That way, however it goes you have that reminder in hand and can keep asking what you need to know. I'd even preemp at the beginning - just to let you know I have a list of questions I'd like.to go through as I'm feeling quite in the dark about how this is all going to work.

I have a stage 4 cancer diagnosis and have lymphoedema as a side effect so I can offer a bit of insight into what happened at my first appointment which took an hour and a half in total, the follow up took an hour and the last one I attended took half an hour.

I don't have any open wounds.

The lymph nurses and assistants in my clinic are lovely, very gentle when touching your skin and mine are concerned about my overall health and offer a little bit of emotional support too.

I explained my symptoms, and the nurse took notes and then examined the areas. She then took measurements to compare limb sizes to get an overall idea of how much I was being affected in percentages and some photos to use to measure progress where a tape measure wasn't suitable. Asked questions about my general hygiene/bathing routine and also what I did on a day to day basis and what activities do I do which make the symptoms worse.

Then out came the catalogues and sample compression garments and you are measured and sometimes given a colour choice depending on what the garment is. I will admit there is nothing unsexier than a compression garment and I had a little cry when I saw how ugly they are but the relief when you wear them is worth it.

I was also shown how to use K tape to help with areas that the garments don't quite cover and my husband has been shown how to cut it to shape and apply it to areas I can't reach myself.

My last appointment I was measured for a particular custom fit garment as I'm quite petite and the adult sizes I had trialled were too big and ineffective.

The garments are expensive for the NHS to buy so my experience is you are entitled to two of each but they won't order the second one until they know the first one is okay and you can only re-order every 6 months, if you want more you have to pay for them yourself. Possibly other NHS trusts will differ. In my opinion, I don't think two of each is enough especially as they are so heavy and thick and take a while to dry which means sometimes I have to skip a day or two of wearing them which defeats the purpose, but that's my only gripe.

Massage has been suggested twice now but my oncologist hasn't yet given the go ahead, I would love a gentle massage to help move the fluid around.

When the compression garments work the relief is incredible. I hope you manage to get a great lymph nurse who is as supportive as mine is, she is worth her weight in gold.