naominorthenellis3 months ago

Hi Caroline, I would speak to the people at the Oxford Lymphoedema Practice as they do offer this surgery and they should be able to explain more about expected results and manage expectations. My understanding is that you will always have to wear compression as this is not a cure for lymphoedema, it is simply about reducing limb size. There are other specialists in Europe experienced in offering this surgery too. NNE

caroline111 in reply to naominorthenellis3 months ago

Thank you, yes, it's the prospect of wearing compression 23 hours a day which is so off-putting but then so is having a leg which won't stop swelling 😪

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sleeviejeebies3 months ago

Hi Caroline, I'm afraid I can't offer any insights, but I would also be interested to hear about people who have had liposuction to the arm for secondary lymphoedema. I haven't had any scans done yet, but I suspect my swelling (the limb is also about 25% bigger than the other, and, like you, it all developed rather rapidly over the last 2-3 years) is mostly fat - or at least around the elbow, which seems to be impeding lymph flow in the rest of my arm.

I have an (unsubstantiated) feeling, following googling a little while back, that liposuction may be available on the NHS in specific cases, so it might be worth you investigating to see whether that is the case for you.

Where did you get your scans done? Was it the Oxford clinic? I think I would be interested in having some done, too...

Knoxy9 in reply to sleeviejeebies3 months ago

Hi I'm in NZ and just had Liposuction on arm at MacQuarie University. AU. The procedure so far has had a dramatic affect. Affected arm was 44% bigger than other. After 3 months now 9% . I was concerned about the compression but to be honest it is not comparable to wearing compression full time on a swollen arm. It is lighter, cooler, more comfortable and I have at present no issue with wearing what is pretty heavy compression. So far so good, just make sure you chose a good clinic. Oxford and Macquarie all trained in same procedures .

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sleeviejeebies in reply to Knoxy93 months ago

Thanks for your feedback Knoxy9. That's very encouraging to hear, and I'm so pleased that you've had such positive results!

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caroline111 in reply to Knoxy93 months ago

Thanks Knoxy9, glad it worked for you and the compression not too uncomfortable.

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caroline111 in reply to sleeviejeebies3 months ago

Hi sleeviejeebies. I think liposuction may be available on the NHS but I think it has to be much worse before you can get it. I don't really want to leave it that long. The NHS clinic told me that for the LVA procedure I wasn't bad enough (!) and I think they'll say the same for liposuction.

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sleeviejeebies in reply to caroline1113 months ago

How bad does it have to be, I wonder?! 🙁

And I thought LVA was most effective in the early stages - so that's a bit silly...

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Stephanieo3 months ago

I got it done in 2019 with dr kosutic in Manchester (I saw the guys in Oxford first but opted for damir)

It has reduced limb size yes it’s a very painfull operation tho (and I’ve had my fair share) but worth it, the ankle is a hard area to get down so that is still an issue with me but it is better and overall my leg is only around 1 inch bigger than my unaffected limb. You are in compression straight after the surgery that’s been made on the size you assume your leg will be so the swelling isn’t worse than how your leg starts of that makes sense? But my toes where like rhinos 😅 haha.

caroline111 in reply to Stephanieo3 months ago

Thanks Stephanieo and I’m glad it was a success. How long was it before you could drive? Also,not sure what you mean about your toes being like rhinos ? And did your foot, as opposed to your ankle, get smaller, not just your leg? Three years on, has your leg started to increase?

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Stephanieo in reply to caroline1113 months ago

my toes were so swollen after the surgery my feet looked like rhino feet 🤣

Ermm I drive an auto and is left leg I got operated so I was fine for driving altho I’d imagine if not, maybe around two weeks I woulda waited ?

Foot was reduced a touch also yes ankle was too it’s just hard to get it right down because of the angle they need to go in at. It has increased a bit yeah but not hugely! I have thought about going again for a little “touch up”

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caroline111 in reply to Stephanieo3 months ago

Thanks Stephanieo - guessing you'd have to pay again for the 'touch-up'?😀 And also guessing you have to wear compression tights 23 hours a day?

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Stephanieo in reply to caroline1113 months ago

yeah but wouldn’t be as much as the initial payment, but still a good few thousand I’m sure! And yeah I only take them off to wash, but I always was like that anyway

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foxglove773 months ago

Hello CarolineI had liposuction at the Oxford lymphoedema practice last December, I was the same as you 25% bigger in my right leg. I haven't looked back. The swelling was OK straight after, it was hard for the first couple of weeks wrapping the leg, be prepared for that, but after when I managed to get stockings on all was good. When first measured post op two weeks after my right leg was smaller than my left!! It has gone up a bit since, the thing I have struggled with is Haddenham getting the stocking the right length.

It is a lot of money but if you can do it then go for it. The surgeons and the lymphoedema nurse have been amazing.

caroline111 in reply to foxglove773 months ago

Thank you for your helpful reply. I'm glad it turned out well for you. Did they take fat from your foot? How else did they reduce the swelling in that part? I’m a bit worried about your problem of getting the right fit for the tights. I am having exactly the same problem with the NHS clinic and it is driving me crazy. I have spent four months waddling around in tights which keep falling down halfway to my thigh and I'm beginning to wonder if they will ever be able to sort it. Are you saying that since your operation a year ago they have not been able to get the right fit for the stocking? Also, was wondering why the leg has increased a bit in size?

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AnneBury3 months ago

Hello Caroline111. It seems like you have some answers that might help you. I do hope so.It seems to be that lymphoedema affects people very differently whether they be primary or secondary. I am a primary and since childhood. I am affected below knee in both legs. Mine hasn't turned to fat as far as I know but is particularly solid and large on both ankles - more so one than the other. I can't say the % over normal as I don't have "normal" as a guide.

I know plenty of people with secondary where it hasn't turned to fat.

I think lymphoedema just affects people so differently be they primary or secondary. People's bodies seems to react very differently to damage to the lymphatic system.

There is also the issue of what is actually damaged. Maybe that has an effect? In my case I have good lymph glands but next to no lymph vessels. Well I know that, below knee in my legs, because I have been scanned. Some primaries have OK vessels but missing glands.

Anyway, I do hope you get the help you need. Best wishes

caroline111 in reply to AnneBury3 months ago

Thank you, Anne, for your helpful comments. I do agree we are all so different and I think possibly I have been unlucky in how quickly the swelling turned to fat in my right leg. The surgeon said he had treated people who had had lymphedema for 20 years and the swelling was still mostly fluid. Strangely the ICG showed that the lymph functioning in my left leg was actually worse than my right and yet the left leg looks quite normal. There is so much it seems that we don't yet know about the condition.

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Ola223 months ago

Hi,

It’s really interesting to hear this. I was diagnosed just this year with right leg primary lymphedema. There’s a few cm difference between my left leg and it’s the upper part, mainly knee through to beneath buttock.

I have already been informed that it’s now fatty tissue so you are absolutely right, despite wearing compression daily it’s really not going to change anything, and yet I am apparently in the mild category so liposuction is possibly premature for me. I’d be really interested to hear from anyone who has had lipo and did they have to have this repeated or was this a one off?

Keb222 days ago

hi Caroline, & all, your situation has similarities to mine, I had lymph nodes removed after cervical cancer a year ago , now I have lymphoedema in my left leg, I have had cellulitis 3 times and the last time my leg went from 23% bigger than the other to 42% and it’s not going down even after MLD as well as wearing compression stocking so think it has turned to fatty tissue , I am at the end of my tether, I have an appointment at Oxford lymphoedema practice next week for MRI and ICG , it would be good to know if you went for liposuction and how you found it or if you are still deciding as it’s a big decision.

caroline111 in reply to Keb2219 hours ago

Hi, I only had the operation a week ago and my understanding is that it takes up to a year to see the full benefits so it's early days but so far I'm happy with how things are going.

Ideally, I would have had the LVA procedure, but my leg was too far gone for that, so liposuction was the only option. It is, of course, a very expensive operation at £25k and has taken a huge chunk out of my life savings but I felt I had no alternative as I was told by the NHS clinic my leg ‘wasn't bad enough’ (at 25% bigger than the other and rising) for them to pay. Given your leg is 43% bigger and you've had a lot of infections it might be worth asking your GP first if they can refer you for this operation on the NHS. I understand a small number of patients can get this treatment instead of going privately.

I have been very impressed with the clinical team lead by Dominic Furniss. My main hope now is that the new tights will fit properly. After 6 months of trying, the NHS clinic could not manage to do this, which drove me almost insane .

The other big drawback of the procedure, besides the cost, is that you have to wear the flat knit tights 23 hours a day for the rest of your life. This is not a great prospect - but then neither is a steadily growing leg that doesn't fit into shoes or trousers and makes you feel awful. My best wishes to you and feel free to message me if you would like any more information.

Obviously, I have only just started out on this road and if anybody is further ahead than me and could reply about how things are with them it would be really helpful for both of us. Thank you.

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Keb2217 hours ago

Thank you caroline111 for responding and best of luck with your recovery, it’s positive you went for the operation. I am at the end of my tether not getting shoes or and only fitting into joggers so hopefully next week after my appointment with Prof Furness I will have an option of making progress, if it is liposuction and stocking 23 hours a day for life is only a little bit different from now as I currently wear compression all day so it will mean wearing at night but hoping my leg would be near normal. Good suggestion on trying with GP, I have emailed them, I tried with my private medical insurance but they wouldn’t fund it as they said LVA wasn’t on the NICE guidelines yet, and liposuction they wouldn’t cover fat removal, I tried to argue it was reconstruction but they wouldn’t have it.

Do you have to go back for regular check ups at Oxford as I am in the North East of England so that might be difficult but would do it if I have to?

Thank you again for getting back to me I appreciate it. Karen