Primary Lymphoedema

[ocdjcd]

I really have not considered any surgery before, but wondering if LVA is recommended for primary lymphedema sufferers. All new to this game so please forgive me for my lack of experience within this field??!!!!

[Lynora]

It may be worth seeking an appointment at one of the centres that offer LVA, to find out if you would be eligible.

[CCT67]

It depends on the nature of the impairments of your own lymphatics. Generally, Primary LE is much less operable than Secondary LE, according to the surgeons who perform LVA. You can have an assessment including ICG Lymphography to find out your suitability. If you’re in the UK you could make enquiries with surgeons Professor Furniss and Mr Ramsden. Sadly, the consultation/assessment to determine suitability is not available on the NHS and costs between £650-700. However it’s a worthwhile assessment as the investigations they complete reveal so much about the lymphatics in the affected limb/s (at least I think so). The operation itself is not available on the NHS and costs in the region of £17,000. One day hopefully that changes!

[Niktcx]

If you can afford it go for the assessment at Oxford. I have primary lymphodema in my left leg. I regret not going sooner as I personally think that LVA surgery could if bypassed a blockage. By the time I went the professor said that I had no main lymphatic channel in my leg. Presumably it was there had a blockage which caused the system to disintegrate. It got much worse from the age of 43 onwards. It's too late to know now but I would spend any amount to repair the lymphatics in my leg. I was told by the lymphodema nurses that it wasn't possible to have surgery and I took their word for it I wish I hadn't listened to them. Seek out all of the help you can as early as possible. Good luck.