Will NICE be issuing guidance on supermicrosurgery (LVA/ lymph note transfer) as a treatment for lymphoedema any time soon?

[Dream_in_pink]

Hi there,

Am currently being evaluated for this type of surgery - reading some of the answers on here, it seems that some people have tried it, maybe privately or NHS, a few places offer it but generally it is not widely available - even though these treatments appear to be widely accepted as valuable in countries like Japan and France.

Just wondered when NICE may issue some guidance on this?

Totally appreciate that this is an expensive procedure but when you look at the longer term consequences, there may be strong arguments for it i.e. better mobility (always frustrating, especially in the summer) and reducing likelihood of obesity as a result of being able to exercise, reducing episodes of cellulitis, reducing potentially disabling effects which might allow some of us to be able to work more (and pay more taxes!) etc etc.

I just feel quite strongly that, having had this since my early 30's (and now am early 40's and retired due to long term health problems), it would be good to have some guidance out there if there is hope that our problems can even be partially helped.

Anyway - off to the hospital tomorrow to find out if this may be an option for me. Despite having had lots of pelvic surgery already, I am thinking of giving this a go. Hobbling round in the heat with a painful leg is not great!

Take care,

Dream in Pink

[syrup01]

I think if there were more guarantees of a cure with LVA etc, we would see it more readily available, but as with these breast cancer drugs that extend life for a few months, there is the argument for how cost effective it is. My surgeon saw me on the NHS, but I sought him out and then asked my GP to fund it, which they did, but I am 39. For those older sufferers (sorry bigleg) I don't think they would be so forthcoming. My surgeon will see NHS patients but he says he doesn't "offer" it because he would be swamped with patients and he wouldn't be able to help any of his other patients who rightly should be a priority..

[behappy1 in reply to syrup01]

Can you pm me your surgeon name so I can look this up please. X

[Rebec]

I just wonder if removing healthy working lymph nodes from one area of the body might not endanger, in the long run, the proper functioning of the ones left behind and then end up with two problematic areas instead of one. In my opinion, one has to wait for a number of years to ensure the surgical procedure is recommended for us all lymphoedima sufferers.

[linda6 in reply to Rebec]

This is exactly my concern I have Lymphedema in my right arm after having breast cancer 11 years ago. My Lymphedema nurse mentioned this surgery to me, I asked him how many of his patients had this surgery and he said about 25 but he did not have any record of how many it was successful for. The operation I believe was being offered privately but as only 25 operations had been carried out in the West Midlands this is too small a sample for me to have this surgery at the moment. I intend to wait until a much larger number of operations are carried out and then look at the success rate..

[Hidden in reply to linda6]

Hi, Have you asked L S N about your possible treatment ?

[whisker5]

I think that the Oxford microsurgeons have requested comment from NICE.

[Dream_in_pink]

Thanks so much for your replies. Well that was a very interesting morning! My surgeon is at Queen Vic Hospital in East Grinstead - Mr Teo (I asked his permission to post his name on here so I hope that is ok). They tried the photodynamic eye with indocyanine green dye this morning. Sadly it didn't go anywhere - either in my leg without lymphoedema or the one with it! Anyway - hopefully they are going to have another go incase there was a problem with the dye. If not, it could mean I have early stage lymph problems in my good leg.

9 years into lymphoedema and no one really knows why I have it. I shared my patient story in a TED talk last year because people don't talk about embarrassing things - you can see it here if you like: youtube.com/watch?v=g1D_ya4...(Not working as expected?)

I wear my compression stocking everyday It has made life more comfortable. I swim in it (and don't care if anyone stares - their problem, not mine!) and I wear skirts and dresses without caring what anyone thinks, so that is good. It took me a while to do this though. I spent a long time living with a urinary catheter and now I self catheterise, have had bowel surgery, numerous gynae surgeries etc - pretty undignified all of it so I have just adapted to the fat leg problem!

I have no idea where this bit of my journey will go, I don't think I will be a candidate for LVA somehow and lymph node transfer may be too difficult but we shall see. I am just glad there are pockets of surgeons out there who are trying to make life better for us. Really hope the Oxford microsurgeons have some comment back from NICE as so many of us have waited so long for access to something that might help us…. even to get MLD on the NHS would be a real step forward!

Good luck all! Take care.

[Hidden]

i cannot see any funding on the horizon unfortunately. My own, which is N I C E approved, has been bid for 3 times to my C C G but to no avail. I have Lipo- Lymphoedema which does not respond well to conventional treatments so the team at St George's prescribed Liposuction. I have been waiting 15 months now but the procedure was first suggested as a way forward 4 years ago.

We have offered to pay but it's going yo cost £10 - 12 000.

I have been told I'd get a very good result but, of course, would need to wrar hose 24/7 for the rest of my life which I am willing to undertake.

My " lymph" is required for the genetic implications of Lipoedema too !

It is very frustrating.

Apologies to those who know my story well...

There is no cure for either ' dema but why we are denied treatments when most other conditions, happily, are not is a puzzle to me.