Hi all, I'm looking at LVA surgery and tumescent lipo for lipodema and secondary lymphodema following cancer treatment in 2005 when I was 26. I've already investigated and contacted the doctors often mentioned in here. My question is is there a way of measuring success and how many ops each has performed? I saw someone compare the Campisis doc saying he had done 2000 ops with 75% volume reduction in 80 cases. Where did that info come from and is there a way of replicating it for the others? Also has anyone successfully had LVA followed by 'wet' lipo. My lymphedema seems to have also covered my legs in a later of awful lipodema-esque fat. Finally anyone successfully had it on NHS. When I'm done with this in going to make a document for others! This is so complicated!
LVA surgery success rates : Hi all, I'm looking at LVA... - LSN
LVA surgery success rates
In the UK, certainly on the NHS, the surgical options for lymphoedema are in their infancy, so statistically and clinically there is not enough evidence to determine success rates etc, however my surgeon (who was unsuccessful with my LVA) has travelled to the Far East where surgery has been performed many times, and states that the procedures are sound and lymphy limbs react well to surgery, but with lymphoedema how do you measure success? Can surgery cure it? Yes, but unlikely. Can it improve it? Probably. Will it make it worse? Apart from the usual dangers of surgery, unlikely.
My LVA was unsuccessful because he couldn't find suitable lymphatic vessels to attach to the blood vessels. Probably down to my history with cellulitis. However I have had a lymph node transplant (from neck to groin) and more recently liposuction (3.5kg of fat replaced by major post op swelling). Both procedures take time (months to years) until you appreciate how successful they have been. The benefits I have had is from the transplant that my lymphoedema seems to react better to compression therapy and from the liposuction my leg is a much better shape than before. Is my leg smaller? Yes but I am still around the 30 - 40% mark, but I still have the post op swelling which is going down. Do I judge this a success? Yes, because I am well and I am getting better, but it is a long slow win.
Oh by the way, liposuction is not to be taken lightly - be prepared to be sore, swollen and bruised for a good while after.
I am awaiting funding from my C C G for severe secondary L E complicated by Lipoedema. for Liposuction @ St George's. I have been told there are no guarantees & few Patients in the U K who have had NHS funded surgery. I believe it is available at The Christie. I have undertaken the wearing of compression garments 24/7 for the rest of my life. Having said that my team are pretty confident of getting a good result as my swelling is very fatty but only with hose. The after care is long & intense & as previously said very uncomfortable. The therapists at St George's have been to Sweden to train in the post op aftercare where the procedure is performed quite frequently. It might be worthwhile trying to find out what the success rate is in that country. I think Germany is also achieving successful outcomes wit the procedure. Good Luck !
Hi, have you looked up Pubmed results? These usually show abstracts of published research including results and conclusions and how to obtain full articles, and indicate similar research. Simply google Pubmed and the subject, it cAn be a useful starting point.
Hi all thanks for your replies.
Hpmt1 - that website is a mine of info - thank you
Syrup - can I ask who your surgery was with? And when did you have it? And did the same surgeon do the LVA and the transfer AND the tumescent lipo? That is one talented guy - or girl - if so.
Aprille -how long did you wait for your referral to St George's? And then for surgery? I actually have an infer appointment with a surgeon at the Christie, but he doesn't do it himself.
And has anyone gone to Germany or Sweden for treatment that you know of? My understanding is that as UK citizens in EU we 'should' be entitled to surgery that is available to the country's citizens.
Sorry for all the q's. After hitting a real low as the reality that this is my life sunk in and the uncertainty of what it may bring (far worse than the cancer for me personally) I am on an absolute mission to do everything I can do deal with this.
Hi, belatedly it is now 3 years since surgery was mentioned. I saw Proff M privately for some years but needed to transfer to the N H S to be considered for the procedure. That process took a year alone. My bid for funding was supposed to be put together after I'd seen the surgeon & Dr Gordon in April this year. The bid took months to put together but is now finally with my C C G but I remainpessimistic about it being successful.
At the Lipoedema Conference I attended in June there were several people present who had had the procedure in Germany along with a Surgeon who performed it. The success rate seems to be very high but I do not remember if the Patients had purely Lipoedema.
Hi Jo01,
This is a really good and important question, and others have given some really useful answers. Here is my take on the literature, as well as my experience of treating patients using LVA, and seeing the results presented at scientific conferences.
LVA: 85% of patients improve. Average improvement around 50-80% of the excess volume (depends on how long after procedure this is judged). Can be done under Local Anaesthetic as a daycare procedure, and is low risk. Needs high level of technical skill and training. Probably works better the more LVAs are completed, so preferably have 2 or more surgeons operating on you at a time. Quality of life also improves.
Liposuction: All patients improve in volume. Average improvement around 80-100% of the excess volume. But...(and it is a big but...) the improvements are only sustained if you wear compression garments 24/7 for the rest of your life. If you take them off (other than to shower) the swelling comes back. This is large volume liposuction, done under General Anaesthetic with a 7-10 day hospital stay, and so is higher risk.
Do not go to your average cosmetic surgeon for this liposuction. This is a big deal, not like cosmetic liposuction, or so-called micro-lipo. Your surgeon should have been trained by Dr Hakan Brorson in Sweden before undertaking this procedure.
Lymph node transfer: Variable number of patients improve (depending on how followed up and reported). Average improvement around 50% of excess. This is a general anaesthetic procedure taking around 4 hours, and a 5 day impatient stay, so again is higher risk. No-one knows how the operation improves lymphoedema, and it may just be the scar release that helps the lymphoedema. There is definitely a risk of developing lymphoedema in the limb where the lymph node is taken from. This procedure is big in the USA because it pays the surgeon more than LVA (I was told that by an eminent Professor of Surgery from the USA).
I hope this is helpful!
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Hi thankyou for your post. What is the recovery rate for LVA and recommended rest. Ie to return to work after procedure. This is for the leg and driving 1.5 hours per day.
That is extremely useful thank you very much LVA Surgeon. As of today I've been officially diagnosed with lipodema as well as my lymphodema which is apparently mild (doesn't feel mild!). Does the 24/7 compression for life apply to lipodema as well as lymphedema? For instance if i went for the LVA option for the lymphedema, would it then be possible to treat the lipedema with tumescent liposuction? And if so would that entail 24/7 compression? Regards the LVA - which sounds like it has very positive results - is the expectation also that compression would be needed 24/7 afterwards? I currently use compression during the day and nothing at night. And finally are there any statistics that show when LVA has worsened lymphedema? Many thanks for your replies on here. It's incredibly valuable to have a surgeon's views.
Hi Jo01,
I think it is important to accurately diagnose problems. If you have pure lipoedema, then it is possible that liposuction would not need to be followed by compression for life (though it would probably be recommended for at least the first year afterwards). If there is a lymphoedema problem too, then re-accumulation of fluid after liposuction will lead to re-accumulation of fat and therefore recurrence. I would suggest you get a test to diagnose whether you have a fluid element to your problem (ICG lymphography or lymphoscintigraphy, perhaps both).
Your point about the microsurgery (to remove fluid) combined with liposuction (to remove fat and volume) is a good one. Because both procedures are relatively new (around 20 years or so), combining them has not happened until relatively recently, so no-one has medium or long-term results. It is too early to know for sure whether patients can get rid of their compression and have the volume reduction (the holy grail combo!) by combining the two. It is certainly something we have considered doing for highly selected patients. It is, of course, two operations, as the highly technical microsurgery and the high volume liposuction can't be done in one operation without undue risks to the patient.
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Thanks very much for this. Lots to think about. Jo
Where are you located? If in the London area, there is one specialist I am aware of, Dr Ramsey at the Royal Marsden. I saw him and he was not as optimistic as I was hoping, I think it will be some time before they can "guarantee" those results. It all depends on the lymphatic system of the individual and the way it will behave post surgery.
On a different note, I find it shocking that so little is done for such a debilitating "silent/secret" side effect of cancer treatment! When people in the future will look back, they will call all this barbaric the same way we think of the middle ages treatments or lack of...!
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