Yes I completely understand I think people can be so rude staring and I don't know why they think it is ok to ask you what you have done to your arm when they don't even know you! They have NO idea. It is so hard to deal with and I don't think there is enough in the media so people are just ignorant I guess it's not their fault for not knowing but it drives you mad when you constantly get asked. I am in nursing and even I didn't know that this could happen following breast cancer it's just not talked about but when it affects you it consumes very minute of every day. X
Hi I wonder if anyone else has got worse after the LVA surgery? As you say not improving was the worst case scenario given which you accept. I think if I was in your position I would probably give it a go also. I know they do lots if investigations to make sure they take the right lymph nodes,It's so hard to make decisions when you don't know what the outcome will be but it's probably worth a go as it hopefully would give a good result and improve things for you. I really hope it goes well you deserve some luck now. I hope you didn't pay for the second LVA procedure it's not cheap! It's so rubbish that we have to cope with this x
Hi whitelily - yes I ruled out the lymph node transfer in 2015 due to the risk of lymphoedema in the donor site and I chose LVA as it was 'risk free' ie it couldnt make my arm worse and that the worst outcome would be 'no change'. I didnt expect a cure, I just wanted to go without a glove if possible and maybe not wear a sleeve for special occasions. I certainly didnt expect a rapid worsening.
I do feel that I have no choice but to try LNT surgery now because my arm has progressed so much in a couple of years. They do use fluoroscpopy these days to identify superficial lymph nodes and my surgeon has a good track record so I am doing it in 4 weeks time.
I hope your arm stays under control - typical that the broken bone was that side!!
Gosh jingo I do feel for you that has been awful what you have had to go through. I was considering the surgery but still undecided as my lymphoedema is not too bad mainly around the elbow and hand it's just the pain of having to wear compression everyday and to make matters worse I broke my wrist 10 weeks ago and had to have surgery I now have a titanium plate in there it would be my lymphoedema arm wouldn't it!! Swelling increased after breaking arm. I had the TRAM recon done a year ago and was considering doing the lymph node transfer but I know there is still a risk of the limb where they take the lymph nodes from then being affected by lymphoedema. I know this is only a small risk but still a risk none the less. To me it was too much of a risk I could not bear living with lymphoedema in the leg as well as the arm x
Just been for my evaluation at Oxford, they didn't mention anyone with arm surgery who got worse! They did say that it might take up to a year or longer for the full effects to show. I am really hoping to get out of compression garments so would be interested in hearing how things are going now 🙂
I developed Lymphoedema in Novemeber and have been put on admin work which is only driving me a little bananas.
Hiya - when I was first screened I was told I was a good candidate, there were a couple of clear channels working, and my swelling was only 6%. I was told that 85% of people see some kind of benefit and 15% see no benefit, but the option of it getting worse was not mentioned as it had not happened. I'd be interested to know if you were told that they now have a patient who has got worse?.
It is now 4 months since my surgery and my arm is still much larger, with more pitting and is a different shape from pre-surgery (worse). At last official measurement it was 18% I also self-funded, and it upsets me that it is worse, but with all my treatment for cancer and lymphoedema, I can only 'rest' when I have tried everything in my power to improve things - if that makes sense. So in that respect I am glad I tried and who knows there may be some benefit that I am not aware of (eg I have never had cellulitis, and maybe it will help keep that at bay - who knows).
Good luck deciding, it's hard I know
I had sreening for micro surgery at Oxford yesterday. Unfortunately the flow of my lymph suggests surgery only has 50% chance of being successful and even then would reduce my arm from 22% to 10% as a maximum. I am having to fund the surgery myself so undecided what to do. Could I ask ladies who have had it done at Oxford what % of success they were given and did it tie up with the results after surgery?
Jingo can I ask what % success rate you were given in your initial consultation? I went for mine at Oxford yesterday and was given 50% chance of success so not sure whether to have the surgery done.
Hiya aisher2000 - glad to hear your elbow should resolve itself eventually - real bad luck to have done that, I do feel sorry for you.
My arm is unchanged, I still wear a sleeve all the time, but noticed that my arm doesnt swell as much when I do take it off in the evenings so I am hoping that is a 'sign' that the suregery might still work, but the weeks are going by and I am aware that as time goes by there is less chance of it givin me the improvement I had hoped for.
Shazmo - I hope it comes sooner rather than later!
Thats great news sounds like things will settle down given time. It is like our lesson in life is patience God knows we need it in abundance with all the waiting we have to do! But hopefully we will all get our reward in the end. I am on waiting list now so am hoping my recon will get done this side of Christmas and not the other. Remaining forever hopeful😊x
Hi aisher2000 what a nightmare!
Typical it was your affected arm and not the other one! Hopefully it will just be a short term glitch and not affect the LVA. I'm sure once the swelling has subsided and the elbow healed you shouldn't have any long term probs. Nothing is straight forward Is it? And as you say we all deserve some good news for a change. I am now on waiting list for Diep recon which I am really not looking forward to but feel I don't really have much other choice other than to stay as I am and that for me isn't an option. Have had to put my arm surgery on hold until I am sorted with recon so don't know how long that is going to be and my arm is getting a bit worse maybe because of the heat. Hi Jingo it sounds like you are having some improvement which is great hopefully it will continue over time especially if you can get away with not always wearing compression. That is what we all wish for in the long run😀xxx
aisher2000 oh no what a disaster! I think I triggered my own lymphoedema by falling and smashing my elbow a couple of years ago, so I can well imagine how swollen it is. I hope it doesn't affect the success of the LVA surgery in the long run.
Surgeons a bit stumped about my arm - said it might go down in the future, but obviously we don't know. I am stumped too - there is no logical reason for it to get worse as all they have done is create some drainage - even if it didnt work there doesn't seem to be a any logical reason why my arm would be worse.
What I have noticed in the last couple of weeks is that when I don't ear a sleeve my arm doesnt swell. Also the hot weather hasn't really made it any worse. So although it's larger it is perhaps more stable? Either that or I am clining on to any small hope!
Good luck with getting your elbow fixed and healed xx
Hopefully you will see some improvement over time, maybe the infection has caused a lot of the swelling but just takes time to sort itself out. Thanks for keeping us updated it is good to get a balanced view and understand that things don't always turn out good,at least initially. Keep us posted and hoping the next time you post it will be good news and that your arm has started to improve. It is so hard all the extra things we have to go through. Thinking of you. Take care x
Well I do know it was a lot bigger 1 month after surgery so the only good news is that it has gone down from that, but they think the anastamoses have failed for some reason (but still doesnt make sense that it would get worse - it should just stay the same). Will just need to see what happens over the next three months I guess.
My lymphoedema service just told me to sit it out and see what happens.
Good luck deciding what to do about recon. I had both breasts completely removed in the end and don't regret it - gives me peace of mind not to have any breast tissue and to know that any lumps will be very obvious!
i am sorry that you have not had good news at your follow up appointment it must be getting you down. But as you say you are glad you have tried. It is difficult that we are faced with these decisions I have had a failed reconstruction and having to now decide what to do next as well as what to do about my arm. Do they think it may settle down over time? Have you been getting much support from the lymphoedema service? X
I am just back from my 3 month follow up appointment and my lymphoedema has got a lot worse since the surgery. No idea why and it seems I am the first case where this has happened but my arm volume has gone up by 250ml. Using my own calculation that means my LE has gone from about 7% up to 18%.
It was visibly bigger so this is no surprise but I am still upset to have it confirmed and to realise it is so much worse. I had only prepared myself for the worst outcome being no improvement.
Still glad I tried, but now feeling very worried about what this means for my arm in the future
Gald you've had your op aisher2000 and pleased it's gone well. After my op I had swelling caused by the trauma of the op. My arm felt much lighter and more comfortable after the op although the swelling didn't was still there. I am now 9 months on from the op and my arm is improving very slightly all the time. My last assessment was in April and my next one will be in October so it's a long wait to be measured again. At my next appointment I think they will be doing that injection of dye into my hand to see how the lymph is flowing. Hope you continue to improve and the swelling reduces. Keep doing the SLD. x
i am sure it is just swelling from the op and it seems that with this surgery results are not immediate but more over time. I know whenever I have had previous ops for reconstruction my arm has swelled up slightly but then settled. I would be the same though, I think we all just want to see an immediate difference and it is hard to be patient when you so want it to work. Hoping you will get some reassurance at your post op visit and things will improve given time. As you say it is better to try the surgery otherwise we will never know and the other option is it getting worse over time anyway if we do nothing. I am going ahead with the surgery probably around October time. Try to stay positive though I know that is easier said than done! Xx
Hi Shazmo, my infection has cleared up, but my arm is still bigger than pre surgery. I am trying not to let it get me down but it is! I had a regular check up with my usual lymphoedema service last week and my arm is 1.5cm bigger than 4 months ago, but the therapist says that she thinks it might be post-op swelling and not lymphoedema and that I should wait and see what happens. Very frustrating only because I had a few days where the surgery appeared to work very well before this swelling.
my other arm is fine and has reduced in size by 0.5cm.
i should say that I still don't regret having the surgery - for me it was important to at least try and I am still hoping for results further down the line, and I will report back in August after my 3 month follow up
just wondering if you managed to have the surgery and how you got on? I am booked in at end of July for a consultation x
Thanks for sharing your story it is really encouraging for those of us who are undecided. It sounds like you have had a great result already. You were very lucky to have been selected in the Wales trial I am still looking at trying to get a loan for my operation. I am in the middle of having reconstruction so probably need to get that done first but am concerned about my arm getting to the point where it can no longer be helped. Have already had the consultation and was told that I have a reasonable chance of success and even though my arm is not too much larger ( I just have swelling around elbow and hand) there appears to have been a lot of damage already done to the lymphatic system. Hope you keep us updated on your progress u definitely going in the right direction. As you say not to expect miracles I will just be grateful for it not to get any worse.
I'm new to this forum so a little bit about myself. I was diagnosed with breast cancer in 2012, and had my lymph nodes removed as a result. I've had lymphoedema for 2 years, which is a constant reminder of what I've been through. The NHS in Wales received funding last year to carry out LVA surgery on a limited number of patients and I filled all the criteria for this innovative surgery. I had my surgery in October 2015 and I am pleased to say that it seems to be working. At my six month assessment the volume had reduced by 12% and my arm feels so much more comfortable and normal. I had 4 incisions and a total of 11 anastomosis. The operation took 4 hours and I was entertained by the surgeons favoured music- Michael Jackson. The nurses were fab and, as it was a new procedure to the hospital, they were interested to know what was going on. I had to take antibiotics immediately after the op to prevent infection. Don't let your expectations to be too high following the op, I am still doing SLD twice a day and other exercises as well. The lymphoedema specialist told me not to protect my arm and treat it as normal. I play golf and lead an active life and I have to say that focusing on arm has taken my mind off my breast cancer worries. I am due for my next assessment in October, as I said before don't expect miracles straight away and look after yourself. Good luck hope everything goes well. I hope this trial that I have been fortunate enough to be part of in Wales is successful and that many more will benefit from surgery.
tricky with two arms as I couldnt do much, just stared at the ceiling fo rmost of it and watched the surgery on the tv. You can take music with you or with one arm perhaps you could watch a movie or read a book on a tablet - not sure as it wasn't an option for me
aisher2000 I had my stitches out at GP as I don't live near Oxford, not due to go back there until August for a re-measure. Its 18 days since my surgery and I am not back to normal. I usually swim and do weghts at the gym etc, but my stitches are still sore and with the infection I am still being kind to my arms and not doing any lifting or weights. I think I will give myself another week before I start trying my normal activities
Like Shazma I was rejected by CCG but for about 4 reasons so I didnt bother appealing, it was always a long shot!. I tried to justify the cost of paying by working out how much money I might 'save' on MLD over the next 10 years and as you say, I just felt I had to do something.
Hi jingo it is good to read your story and it sounds like you are doing ok I bet it was difficult having both arms done at same time. Hi aisher2000 try to apply for CCG funding as every area has its own but mine said no because it is still classed as experimental surgery and not enough research has been done on it in the UK to classify it as safe. Saying that when you suffer with lymphoedema as we do u will try anything if it has a hope of helping x
aisher2000 - nothing major. I have 6 sets of stitches in total and only one set got infected (I think the dressing got wet). I watched it for a couple of days but it was getting worse so I started taking my emergency antibiotics and it is healing now. I didn't feel ill or anything (I have never had cellulitis so not sure exactly what I would have felt like).
My arm has been more swollen this week, but I guess the infection didn't help, plus it has been very warm so trying not to read too much into that!
I am new to the site. Had breast cancer 4 years ago and have had lymphoedema recently diagnosed though have had the swelling for 3 years, kept getting told it was a vein problem. I am now considering having the super microsurgery went to the Oxford clinic 3 weeks ago and was found to have quite a lot of damage though he says I have a reasonable chance of it helping. Can't believe it is going to cost £15,000 have tried to get funding from CCG but been turned down so guess I will have to get a loan. Still in process of reconstruction and think I will need one more surgery as the lipofilling hasn't really taken this time. Does this ever end? Life is just a continuing round of hospital appointments and I think it's unfair that we then have to fund our own treatment for lymphoedema. What I have read seems quite positive from the super micro surgery for lymphoedema but I am still in two minds especially as I have to borrow the money as well. Has anyone had no improvement following the surgery?
Good luck with it.
Most important thing was to not drink too much on the day so I could avoid a catheter 🙂 I also allowed myself a few days of doing nothing afterwards to try and give myself the best shot at success, so line up some TV and comfy pillows, prop your arms up and relax!
I found this thread very useful when I was trying to weigh up whether to do LVA surgery, so i just wanted to say hello as I have now had the surgery in both arms and would be happy to answer any questions from anyone who wants more info. Surgery was done 2 weeks ago under local anaesthetic in Oxford. I had three surgeons and it took 5-6 hours. I had preventative surgery in my left arm and I am hoping for an improvement in my right arm. Had my stitches out today and mostly look good, but have one infection so taking some antibiotics.
I have to say I noticed an improvement right away - within 24 hours my arm looked slightly different and felt lighter. I am told the main improvement will be over the next 6 months so I am very hopeful that it will help get my lymphoedema under control.
The doctors are impressive - cutting edge stuff- but they have also been really nice to deal with and very helpful post-op - called up to see how I was doing and are happy to answer questions over the phone.
Its expensive and I failed to get CCG funding, but my lymphoedema had progressed so much in just one year that I wanted to do this before it progressed any more and left me past the point where I might no longer be a good candidate.
Just wanted to share my experience so far and thank those of you that did the same!
An update with news ..... Yesterday I had my penultimate check on my lymph arm surgery with the consultant, all good and he is very pleased with outcome 🙂 now he has advised me in general conversation that the LVA surgery has really been classed as a trial so far BUT due to the great results on the majority of women they are putting the results forward for more NHS funding, if this should happen it would mean far more ladies would be able to have the surgery nationwide under the NHS, lets hope this is the case and the team pushing for this are successful , this conversation came about as I expressed how unfair it was that it was available to so few when it is needed by so many, he totally agreed so fingers crossed 1 and all,
Love to all x
Sorry for the delay, but I don't check this site very often these days. I had the supermicrosurgery in April this year in Oxford and it cost £15,000. Yes it was incredibly expensive, but worth every penny. We cashed in a pension to pay for it.
It is a 5 hour operation and I had two surgeons working on my arm at the same time. Unfortunately my surgeons believe it will be years before it is available on the NHS.
Five months on and I've just got back from a week's holiday in Spain when I didn't wear the dreaded sleeve at all because it was so hot. My arm hardly swelled at all, except for the first day. I managed to get it back down with massage, and after that I massaged it regularly throughout the day. I am thrilled to be sleeve free for a lot of the time, although I do still wear the sleeve if I have a busy day.
I was lucky, I fit their criteria for surgery almost exactly in that I had only just developed the condition and it was mild at 11% volume.
At my 3 monthly check up the volume had reduced to 6%. I'm due to go back again at the beginning of November and to be honest if it doesn't get any better than it is now, I shall still regard it as a success.
To be mostly garment free and not to have to worry about cellulitis and other infections is something I didn't think was possible when I first developed the condition.
I hope this helps. We've already been through so much, it's rubbish that we should have to face this as well.
Thank you so much,
yes that is a really lot of money.
i agree all should be able to get it where ever you live
again that you for your reply
Where are you located/treated I had mine at the Marsden Sutton under the nhs but I have heard it is approx £ 10,000 which is a ludicrus amount ! It should be available to all who meet the criteria of beneficial results
please can any tell me what sort of cost is the surgery for the lymphoedema microsurgery?
i will start saving , if it is within range>
many thanks and all good wishes to everyone
That is a really great result at 3 months, at 6% it must hardly be noticeable ? Mine is still 12% was 21 and tbh people dont notice if I dont have my sleeve on, I still wear mine most of the time and I am a year from surgery, mainly because the hot weather affects it but it is so much better and lighter, I am really pleased for you as its quite a thing to go through the op and then recovery etc, wishing you further improvement
Good evening. Thought I would report on my 3 monthly check-up after my LVA surgery on 28 April. I am delighted to report that it is working! The % volume has gone down from 11% to 6%. There is no longer evidence of LD in my hand, hurrah. However, I must continue wearing a sleeve for the next 3 months and if I don't wear it during the day I should wear it at night. Dr Furniss is delighted with the progress and is sure that I will eventually be sleeve free. Can't tell you how relieved I feel. I realise how very lucky I am that we were able to afford the surgery.