LVA on NHS: Hi I have been offered LVA for lymphoedema... - LSN

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LVA on NHS

huwboy
huwboy
37 Replies

Hi I have been offered LVA for lymphoedema on the NHS, any links to articles on the subject would be appreciated.

Kind regards

37 Replies
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Rebec

Hi, I would like, if I was in your place, to meet people who had this surgery and see how pleased they are with the results as I have the feeling that many web pages are written by people who offer the procedure. I'm glad you are offered this surgery on the NHS.

Good luck with the LVA.

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huwboy
huwboy
in reply to Rebec

Hi, thats exactly what I need, real life examples would be great, thanks for the good luck message, I will keep this forum posted on progress.

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Danielle27

Hi, that's great news! I am desperate for this surgery. Do you know how I should go about it as my GP said it hasn't been approved yet? but it must have! Thanks x

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huwboy
huwboy
in reply to Danielle27

Hi, the way its happened so far is that my GP referred me to my local lymphoedema clinic, they have been great and put me in touch with a microsurgeon who is starting to offer this to suitable patients. I will keep you posted on how it goes, they have hinted they they may be able to offer this to a wider audience soon.

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Lizziejane
Lizziejane
in reply to huwboy

Hi huwboy....do you mind me asking which area health authority you are in and which hospital??

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huwboy
huwboy
in reply to Lizziejane

Hi I live in South Wales

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lymph-girl

I have been looking into this myself and would be interested to know where you are having the surgery. I hope you don't mind me asking but is it as part of the Royal Marsden trial? I have secondary bilateral leg lymphoedema but not cancer related so unfortunately don't qualify to even be referred for testing in London. So would be interested if it is available on nhs elsewhere. There is an article on the LSN website about this surgery which may be helpful to you. If you search on this forum there are a couple of people who have had this surgery and would probably be able to give you more information. I wish you every success with your surgery

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huwboy
huwboy
in reply to lymph-girl

Hi, I live in South Wales, I to have secondary lymphoedema in one leg also not cancer related. The guys down here have mentioned that they may be able to offer this to suitable patients outside of Wales in the near future. I will keep you posted and thanks for the point towards the articles.

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lymph-girl
lymph-girl
in reply to huwboy

Huwboy, that is great news, yes please keep me posted. I am based in gloucestershire, so not too far from South Wales. Would you mind telling me who is your consultant and where are you going to have the operation?

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Lizziejane

Hi huwboy .....I wish you every success with the surgery and the NHS funding!! Might I ask how you have managed to get funding from them??

I personally didn't have any luck,as GP said it wouldn't happen.!! I also have private medical insurance and they wouldn't fund it either,as said it was not recognised by NICE and they didn't have any results on its success etc........!!

I have just on Tuesday this week had the operation and have funded it myself,as seemed the only option if I wanted to proceed...! So many people out there need this surgery to enjoy a better quality of life,and now it has become available,it's not acceptable that we have to fund it ourselves if we want it!! Good luck to you....

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huwboy
huwboy
in reply to Lizziejane

Hi, my GP referred me to my local lymphoedema clinic, they have been great and put me in touch with a microsurgeon who is starting to offer this to suitable patients. I will keep you posted on how it goes, I would love to hear how things are going with you since you had your procedure, well done!

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Lizziejane
Lizziejane
in reply to huwboy

I will keep you updated on how it progresses,but as only had it done on Tuesday,its all very new,so won't know for some time! Where I had it done in Oxford they are having positive results,so fingers crossed.

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huwboy
huwboy
in reply to Lizziejane

Hi, did they give you any indication on how long it might be before you see any visible difference to your limbs since having the procedure, have you been fully mobile since having your procedure? I have been given a date of March 3rd for my operation, so I am trying to think about the effects after the operation, sorry for all the questions.

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Lizziejane
Lizziejane
in reply to huwboy

Hi Huwboy,I have been more or less able to use arm,but told not to do anything silly like housework,or lift anything! It was sore for first week,but having watched them do it,wasn't surprised,as has to delve deeper in one place to find the only lymphnode available!! I am going back to Oxford today to have stitches out,so will have more discussions with Consultants and will let you know outcome......

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AquaGem
AquaGem
in reply to huwboy

Hi Huwboy, I have had secondary Lymphedema for 27 years in both legs & right arm from Radiotherapy for Cancer & i'm trying to get funding for LVA from the NHS PCT ( Primary Care Trust ) I've lived in Bristol for about 13 years, but i'm originally from Wales. Can you tell me if LVA is freely available to Lymphedema patients on the Welsh NHS or did you have to apply for ( Exceptional Funding ) ? Because here in England this treatment isn't freely available on the NHS. Many thanks!

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huwboy
huwboy
in reply to AquaGem

Hi, the honest answer is I don't know if this is widely available on the NHS in Wales yet, I will ask when I speak to them next as a few people on the website would be interested. I think I've been lucky in having a very supportive lymph clinic, and a microsurgeon based locally who wants to progress the procedure. they have hinted that by making the investment in the equipment needed for the procedure they would be looking to offer it to a wider audience. will keep you posted. the first thing to do is to have the ink injection to see if your condition would benefit from the LVA procedure, as I understand not everybody with lymphoedema can have LVA. On the day I had the injection there were some people told that they could not have LVA because of the condition of their lymphatic system.

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AquaGem
AquaGem
in reply to huwboy

Hi there Huwboy, thanks for your reply. :o) Yes I totally understand that its the result of the ink scan which determines if you will benefit from the LVA OP. Please keep me up to date on the Welsh NHS LVA thing!.... Many Thanks! :o)

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shanty
shanty
in reply to Lizziejane

Hi Lizziejane. I am considering the microsurgery. Where did you have yours done? Would be keen to know your opinion

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Lizziejane
Lizziejane
in reply to shanty

Hi Shanty hope this helps,I had mine done at The Nuffield Orthopaedic Centre in Oxford,by Mr Alex Ramsden and Mr Dominic Furniss,who are both Consultant Plastic Surgeons who are now doing this specialised procedure. As I only had the surgery on 21st Jan,it is much too early to comment on,but I have every confidence that it will work,and keep on doing so over the next few years.....! It's just so fantastic that at last there is something that can now help us. Will keep you updated on progress,and the very best of luck to you if you decide to go ahead....Regards.

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AquaGem
AquaGem
in reply to Lizziejane

Hi there Lizziejane, great to hear of your LVA OP! i'm so pleased for you & I really hope you will have a great result too!... I have had secondary Lymphedema for 27 years in both legs & right arm from Radiotherapy for Cancer & i'm trying to get funding for LVA from the NHS PCT ( Primary Care Trust ) Its Mr Alex Ramsden and Mr Dominic Furniss, at The Nuffield Orthopaedic Centre in Oxford, that I hope will be doing my OP!

I think its disgusting that you had to fund it yourself! I'm going to fight my case all the way until the fund it for me... I have proof of the NHS PCT ( Primary Care Trust ) funding, Boob Implants, Tummy Tucks, Liposuction and Sex Changes for people and they won't fund people like you & I... I think its a damn disgrace that they refuse us & will fund people Cosmetic Surgery, when our condition is much more deserving of the funding, when thinking of the bad infection we suffer & have to be on long term antibiotics. If they refuse me I will be writing to my MP & if so will go to the Media too!

Let me know how your results are Lizziejane. :o)

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Lizziejane
Lizziejane
in reply to AquaGem

Hi AquaGem,I fully agree with you,and it is completely unacceptable that we can't get Funding to have this Surgery on the NHS!! Their get out is still very much that it is still not proven or recognised by NICE......I have no doubt that one day it will be,but who knows when that will be....???

It is now a month since I had my op,and already I can see small Improvement,my lower arm is definitely less swollen than it was,and certainly softer to touch.....the connection for that part was very very good,so we thought that would be where I would notice change first!! The other two connections were not quite as good, but still hopeful that they will be successful,and only time will tell....!!

I still have to wear compression sleeve,for up to a year,and see my Lymphoedema Physio,so she can measure&prescribe new sleeves as and when I need them.....

I hate the constrictive feel of the sleeve&always have,but this has given me a new focus,and I will wear it religiously, to aid the work that the Brilliant Surgeons have done and sincerely hope that this is the future for ALL the sufferers of this debilitating condition....!!

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shanty
shanty
in reply to AquaGem

Hi Aquagem. I have secondary lymphoedema in my left leg following cancer treatment. I also contacted the surgeons at the Nuffield, to be told they do not have NHS funding. I spoke with my GP and wrote a letter to my local MP. The MP wrote to the NHS trust. They replied that this procedure is still under review by NICE. Like you I think it is terrible that there is funding for obesity and some cosmetics yet this LVA surgery is left wanting. As we know this surgery is available in Belgium ,Italy, Wales, Royal Marsden at least. I am sure there will be other EU countries as well where it is being done. Personally I think a legal action taken at European level would force the NHS to fund treatment for a UK citizen in another EU state if they have not put it into place themselves in the UK. The irony for me is that this treatment is available at the Nuffield Hospital Oxford which carries out many NHS treatments and I actually live in Oxford.

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Law_Student

Hi, I had LVA on my leg in Belgium in November 2013. I have written a story about my experience, including "before" and "after" photos of my legs. If you would like a copy please email marshan1231@hotmail.com. A few people have asked how I am doing. Thank you! I am doing really well and will provide another update in 6 months time. Huwboy, you are very fortunate to be offered LVA on the NHS. You must have a very supportive consultant. I wish all the very best. Marion

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huwboy
huwboy
in reply to Law_Student

Hi Marion, thanks for the offer of more information, I have e mailed you, glad to hear it's going well for you since the operation. I do feel lucky to have been offered this, I just need to convince myself that it's the right move.

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AquaGem
AquaGem
in reply to Law_Student

Hi there Law_Student, its great to hear about your LVA OP & that you can see a difference after the OP.... I would so love to see your story & your "before" and "after" photos your my legs too!... Can you let me know if thats possible?

Many Thanks :o)

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lymph-girl

Hi law student, really pleased your operation results are good. Would it be okay if I e-mail you for a copy of your story and photos. Lymph-girl

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12rose

Hi guys, what is LVA?! is it something that cure this problem for good?

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huwboy
huwboy
in reply to 12rose

Hi, here is a link to a good article which explains LVA much better than I can.

lymphoedema.org/Menu3/5Arti...

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lovesradio

Dear huwboy I just want to celebrate your success at being offered LVA via your great lymphoedema nurse and microsurgeon on NHS. I wonder if this is anything to do with Wales being first to produce Framework Document on Lymphoefema which Scottish Health Service is now using as model (acknowledged) for their document.

Good luck with the surgery

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12rose

Hi, thank you for LVA treatment, last night when I read article about it, I was just crying and dreaming if one day all of us get well and free of looking for shoes ordering and compresion stocking and more. I want to go for it but because I want to start from Iran, Does anybody know, how much would it cost? Do they do in UK and does NHS will cover? whcih country is best for this and how should I contact with the doctor who is going to opreate it.

I know for all of us is difficult to cope with this swelling, specially if you are single parent with a child who wants lots from you, to play, to run, to take him in different place and so on.

I hope one day no edoma for anybody.

Good luck

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Law_Student

Hi 12rose - and anyone else who is interested to hear about my experience of having LVA in Belgium - please email marshan1231@hotmail.com and I will send you my story. Marion

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syrup01

Hi all, and I am dismayed that so many of you are having trouble geting the NHS to fund the surgical options. I believe that some GPs put it in the "too difficult" box. I had an attempted LVA last year, but my surgeon was unable to find suitable places to attach the vessels, but I have had subsequent lymph node transplant in December which seems to be working. This was all funded by the NHS.

I put in the groundwork to get the funding, by emailing various surgeons who are doing the treatments. Eventually Mr Matt Griffiths from the Broomfield Hospital in Chelmsford said he would be happy to see me under the NHS, but I then had to convince my GP to authroise the funding, but this still had to go through the Primary Care Trust. I put forward the argument that life long treatment of the condition, along with the inevitable infections, would ultimately be a lot more expensive then solving this via surgery. I appreciate it may not be totally successful, but i have lost 6 litres off of my bad leg in 2 months.

i think the problem with lymphoedema is that as it is a chronic condition where the GP does not take the lead in your care, then new treatments bypass existing patients, unless your therapist is as enthusiastic as mine.

The treatment is out there, people, and the NHS can fund it!

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sharon14

Hi I also suffer from this horrible condition, affecting both my legs since I was 16, now 38. I am having my own battle with my trust which is in Swansea south wales to get funding, my GP is great but the decision is out of her hands. Have read huwboy's post's and would love to know which area of south wales are you from ?, best of luck for your op tomorrow, sure all on here wish you all the best.

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Blunderwoman

mylifewithlymphedema.blogsp...

lymphedemasurgeon.com/lymph...

I wish you well with this technique, and please keep us posted on the outcome.

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Blunderwoman

Unfortunately It will become harder to get any funding on the NHS. The bods in Gov are trying to privatise it, so if we can't afford it... :( Lymphatics are lowly classified.

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Kelarams

Ho

Can i ask how you went about getting this and also where you are located. Im based in Scotland but can only see surgery available privately in England.

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king6863

I was wondering if anyone has any updates regards NHS funding for LVA?

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