I have LE in arm which is very mild, but last October went into hand. My compression now consists of very unsightly bulky glove and sleeve. Am considering LVA, I have LE 15 years but only in hand 7 months. Would love to hear from others re experience ( hopefully positive and successful!)
LVA on Arm/ Hand: Can I ask has anyone experience of ... - LSN
A crystal ball would always be nice but no one can say for certain how you’d respond to LVA even if you’re a perfect candidate on paper. Anecdotal accounts show a mixed picture of results. Some secondary LE patients have spectacular LVA outcomes whilst others have no change whatsoever in the months and years post op. Microsurgeons doing LVA sing its praises and claim a high success rate. However, most published longitudinal studies are only a few years old and relate to post cancer LVA. Surgeons are in the business of doing surgery so of course they recommend surgery
Not sure if you’re in the UK or elsewhere (this is a UK site). In the UK you can be assessed for suitability for LVA by Oxford Lymphoedema Practice consisting of 3 microsurgeons who work as a team specialising in lymphoedema surgery (not funded by NHS). In the US, Dr Granzow is in S California and has for many years been a highly regarded lymph surgeon. Dr Cheng whose now at the Cleveland Clinic has made a name for himself in the past 5 years. He claims to be the ‘best microsurgeon in the world’ and says he consistently has superb results. (Anyone can claim anything…). I imagine the other lymph specialist microsurgeons around the world roll their eyes when there hear the newbie surgeon say he’s the best in the world
There are other on-line LE patient groups you may want to canvas for feedback especially if you’re in the US where there is a lot of feedback from LVA patients. There are a few on this site who will likely comment about their results.
Those who’ve had bad LVA outcomes are so discouraged they don’t want to focus on it (too depressing) so you won’t likely find them giving their account on line groups, it’s mainly those with outcomes they’re happy with.
I was fitted with a compression sleeve and separate glove but found that it was really uncomfortable at the wrist and my hand swelled even more. At my next measuring appointment I asked to have a sleeve incorporating a mitten for the hand. This was dismissed as being impractical for washing hands etc. I stuck to my guns and got one. The swelling in my hand reduced, I simply slip the mitten piece up my wrist to wash my hands. I always have this type now. It isn't tight but does the job. It must be worth a try. Good luck
Wondering if you can chat to your garment provider about other less clunky options for managing arm and hand lymphoedema? I had a sleeve and glove for a while and like you, didn't much like it. What I wear now is a Combined Sleeve from the Mediven Harmony range. It fits over my hand to the knuckle joints and over my thumb. Mediven have worked hard to improve the web of the thumb support and the elbow crease, so the garment is much more comfortable than earlier versions.
I have secondary lymphoedema in one leg and foot. I had an assessment for LVA at the Oxford Lymphoedema Practice in 2019. At the time I'd had swelling in my leg for 2.5 years and swelling in my foot for just over a year. The assessment included ICG lymphography which indicated I was not suitable for LVA. Nevertheless I felt having the assessment was worthwhile as it gave me more understanding and insight into my condition.
Many thanks. Can I Ask what insight were they able to give you , and also why they said you were not suitable .
ICG lymphography enables real time imaging of the lymphatic system. I'm a visual person and I found it interesting to be able to see where my lymph system was working normally, compared to where it was abnormal. Seeing the images helped me feel more motivated about doing my SLD and also to strive for optimal compression - maybe because my swelling feels less mysterious now as I've seen what's going on inside me, and I can relate to it better. I know where I have 'dermal backflow' and where I have 're-routing' and to what extent it deviates from normal, albeit I appreciate this can change with time.
My understanding is that in order to be suitable for LVA I needed to have some good quality lymph vessels below my knee, so that a successful anastomosis with a blood vessel might be achieved. The OLP surgeons deduced from my ICG images that this was not the case.