I came back to give an update so anyone looking at this thread gets a sense of the kind of issues that arise around micrsurgery.
I went for the imaging - it was a long afteroon, waiting for the iodine injection to be taken up by the lymphatic vessels. It was quite clear from the imaging that there was extensive damage to the lymphatic system, and in fact all we could find was one tiny thread weaving its way slowly down the back of my arm. Sadly, this meant I was not a suitable candidate for surgery - there needs to be enough undamaged vessels to be able to do repair work.
I was actually really upset by the outcome and I had not realised that I had actually been really hopeful. Seeing the damage to my arm was also not something that I found easy. And then I went through that whole process of coming to terms with having to wear compression garments for ever again.
Having said all this, I am glad I was referred, and that I better understand what is going on with my body, including why the surgery is not a magic solution to our problems with lymphodema.
I just came on to give an update - I go for my lymphodema imaging tomorrow afternoon. I have been waiting months and a cancellation came which I was offered. I am not sure if they will give any feedback. I will be interested to better understand the damage done to the lymph system (if possible), even if I am not eligible for the surgery itself.
As I understand it, the reason the surgery is not approved is not due to funding, but is because there is a lack of evidence base on whether it actually leads to improvement, and this is a necessary justification before putting someone through the risk of surgery that may not lead to change. I hope that in years to come, there will be developments that make this kind of intervention 'routine' for those of us affected by lymphodema. I think what is shocking is how poor and patchy the support still is.
I have lymphodema in my breast not my arm Or at least thats what the onc said after 3mths of me complaining about the hard skin and swollen breast at first he said it was just an infection, for which he gave me a large course of penicillen. I didnt have any lymph nodes removed just a WLE & SNB in March. and 15 sess of radiotherapy in May. The onc has referred me to Alnwick Hospice which deals with lymphodema my first session is Friday so I will keep you updated
Hi Elinda..............I went to my GP. They have to refer you as I think the treatment would come out of their budget....other people have what I consider to be unnecessary cosmetic surgery on the NHS so I don't see why a bona fide condition like Lymphoedema should not be covered.
Oh how disappointing but I'm amazed to hear that NICE are considering this given the current restrictions on lymphoedema care generally. Given that they won't fund bandaging the fact they are considering funding a surgical option is staggering!
I'd like to get my name on that database - who did you have contact with in Oxford and who should I approach? Or do you think I should go to my GP? Is that what you did?
thanks, Elinda xx
Hi..........I got my referral letter through from Oxford to make an appointment, When I called to make it I was told they are waiting for clearance from NICE to fund NHS treatment. Until they get a decision to fund/not fund they are just building up a database of people interested in having the surgery. So , for now, the only way to have it is to pay £10k plus to go private!! They are hoping for a decision in Jan 2014.
Hi Rattles..............I went to see my GP last month, she was very supportive of any treatment that would impriove my condition.::
I got my referral letter this week to ring and make an appointment. I will report back once I've been to see the team in Oxford.
Totally get what you're saying about the sleeve with glove as that is what I wear too. I don't actually have any lymphoedema in my hand but when I wore just a sleeve it began to create a problem in my hand. If it is was just a sleeve I'd be much happier because it's so difficult keeping the hand part clean all the time and it makes it all much more obvious.
Thanks for telling me what you did and you've given me hope that it is possible to get the swelling down. I have to admit that I've been feeling very despondent about this ever happening. It's very hard to me to get bandaging etc as there's nowhere locally so it means very long journeys to find someone which adds to the cost but also makes the whole thing a bit of an ordeal.
My nurse is always telling me to lose weight. I do need to but that makes me feeling really angry. She's only trying to help but I've put on a lot of weight since I went on to AIs and now I'm back on tamoxifen I'm going to try. I love cooking - it's been the thing that's kept me sane - and although I eat healthily most of the time I'm always feeling that I deserve treats! Isn't it enough that we get lymphoedema without having to cut out our treats too?
Well, I had 3 weeks of MLD in the Autumn and during this time was shown how to bandage and tape myself. I was also taught some SLD and I basically carried on myself with all this and daily physio. I think its a bit of trial and error about what works. I was despondent about progress but I lost alot of volume in the limb over a long period of time . More recently I use a piece of foam which the nurse cut to shape, this has really helped the hardened tissue on the hand. And I use a massage ball a bit like a fidget-toy, i.e. at regular points in the day. I have been seen every 3 months for follow- up since January and each time the measurements go down, slowly, slowly. 0.2 cms, 0.1 cms etc etc
Last, but maybe not least I lost some weight and the nurse thinks this is what had made the difference. I have to say if I had read this last point myself I would have been very cross as I did not consider myself over-weight ever, but just going back to work and everything and I have lost about half a stone.
Basically I feel the swelling has gone down and everyone thinks this should make me happy. The reason it doesn't is that I still have to wear a glove which starts at my fingers and finished under my arm pit. The thing I really hate is having no feeling in my fingers.
Hope this helps, Rattles
Rattles - I did wonder why my lymphoedema nurse specialist seemed less sure that this was a good option - this could be why. That does feel rather disappointing as I think we were all hoping it would be the magic bullet.
What my nurse said is that any surgery in that area increases the risk of worsening lymphoedema. I suppose the main risk would be from potential infection.It would be interesting to know more about potential risks. As you say, it's a big weigh up whether to undergo yet more surgery if it could still mean having to wear a compression sleeve etc afterwards.
Lacuna - the cost is around £10,000 which will be for the operation but you'd need to consider follow up and potential extra costs. This is an article from the Daily Mail about it:
Rattles - can I ask when you say hard work what you've done to get your arm down? I'm doing a 40 mile round trip each week to get MLD from a charity and I've had 5 sessions and think it's helping a bit in terms of softening but not sure what to do next. I do SLD every day without fail. Did you have bandaging and/or kinesio taping?
Thank you for sharing your experience re your appointment about the microsurgery. I have to admit that I also feel slightly disappointed that the results aren't more promising. Personally I would really like to be able to do without compression garments, except perhaps for exercising or anything strenuous. But it sounds like this method is not guaranteed to offer that. I think you are right to press ahead with the imaging and see what they say. Do you know if there is any risk that the surgery could make the swelling worse? And is this a treatment that is offered privately if you are not being treated by the Royal Marsden? I would be prepared to pay for surgery, although I would be hesitant if it was very expensive and might not even lead to an improvement.
Thanks for your advice. I am going to see GP next week so will mention this and stiff hands. I wanted though to feedback my vist to see plastic surgeon re micro-surgery. It was mixed, and although they were lovely as with everything on my journey (hate that term) not straight-forward. I do understand now though why the surgery is not so widely available and it seems to me that this intervention is just the beginning of something that may bear fruit in coming years. Basically, of the small number of patients to have surgery, a small number have achieved 100 per cent reduction in limb volume, a small number 0 per cent. In between, most people experience some improvement but still need to use other methods to manage. So, it is a risk/benefit balance. The ground-breaking discovery is that they can now assess lymph function by using iodine to image the lymphatic circulation so as to determine whether there is a chance that the patient may benefit from surgery or not.
I felt very emotional after the appointment as I realised I had got my hopes up for something that may not deliver. They may not see me as suitable as my swelling has reduced (due to very hard work, I might add)and is stable. Also, do I really want to put myself through the trauma of surgery that seems to offer a potentially small gain in that I may still need to wear my compression garments.
We lfet it that I would have the next step - the imaging of the lymphatics and then make a decision.
I am happy to answer questions if anyone wants to know more. On a seperate note does anyone suffer neuropathy and if so do you find the lpymphodema worsens it?
Hi Rattles..........I agree with you that lymphoedema is a side effect that does not get much press but which affects lots of us. I have investigated this Supermicrosurgery, I was hoping it might be covered under the medical insurance I am fortunate to have through work. However, because it has not been passed by NICE, it is considered to be a trial treatment therefore they would not fund it. I then asked my oncologist about it and they told me I had to speak to my GP. I sent my GP copies of the info I had and am waiting for a response, but I do not hold out much hope to for a referal for NHS treatment. In my area MLD treatment is available but not on the NHS so I would have to pay between £50-£70 a session. I am hoping to having MLD later this year, but the therapist will not do it without a letter from my oncologist, the oncologist refuses to do a letter until I finish my Herceptin, as I have had a blood clot , and MLD could cause another one!!! So at the moment I have to rely on compression glove/sleeve to keep the lymphoedema under some sort of control.
ps. re the joint pain, my GP has prescribed anti-inflammotories and they have eased the pain so maybe worth a try.
Miniegg- congratulations on your pregnancy - that is very exciting and I hope you are feeling well and the pregnancy is not aggrevating lymphoedema.
Elinda, I think you took the words right our of my brain- what I wanted to say but was too tired too articulate and which I do see as fairness ie the lymphoedema is a side effect of treatment and there should be support to treat the effects of treatment- I personally feel that we get a bot forgotten about once all the 'treatment' is finished, and while I am grateful to be alive, my body is just not what it was, and yet I am expected to pick up my life where I lfet off work, be a mum, partner, sister etc and things like lymphodema and neuropathy, joint pain (and now bad eye-sight!!!) are brushed aside and I am with you totally ! In fact, I think that the whole reason that lymphodema services are patchy is that MLD/bandading etc is costly and I would think that surgery probably is more cost-effectve.
I also feel that we ly,phodema ladies are overlooked by the usually wonderful BCC- come on you could do more to support us, or help us support each other!
Sorry for rant. Rattles x
Hope this works - trying to get used to new forum!
Rattles - it is partly about fairness. It shouldn't be down to a postcode lottery as to whether you get bandaging or MLD or are put forward to surgery. If there is clinical need you should get treatment no matter where you live. Some areas don't even have any form of lymphoedema service - that can't be right.
But more than that, if there is a cure for lymphoedema then it should be made available on the NHS with more surgeons trained up in the technique. This is a life long chronic condition which can have complications like lymphoedema and have a major impact on people's lives. I don't understand why the NHS would provide the funding for me to have a double reconstruction which is a cosmetic procedure in effect but won't fund me to have surgery for lymphoedema which causes me pain, discomfort and impacts on my day to day life and activities as well as affecting my self esteem. It all seems very arbitrary. I'm not saying that a reconstruction isn't really important for some women - it's not an either/or - but hopefully you see what I mean.
Hopefully with every success with the microsurgery, it will build a stronger case for the provision of surgery.
Please let us know how your assessment goes and whether you decide to go for it. Completely understand your reluctance for further surgery though - it does reach a point where you can't face any more. I think I'd need to be very clear on the risks and what the success rate is. But the potential for a cure does sound amazing!