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Photos as promised

Photos as promised

Here is a recent photo taken today 7 months post operation, I still have the green dye in my left foot but that can take upto a year to disappear. I have flexed my feet so you can see the tendons showing as before the operation you couldn't see these. Xxxxx

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Fab!

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So very glad the procedure worked for you as well. Thank heavens for OLP xx

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Absolutely the best place in the world :-) xxxx

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Beautiful legs xx

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Aw Thank you cant wait to put a bit of fake tan on and get them out its been 3 years!!! XX

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Living in US and Lymphedema in left leg due to cancer.Am thinking of doing this surgery... I think it’s fairly new in us. How much larger was your bad leg? Mine is significantly larger. I’ve had for about 6 years now... so depressing. Have not seen your previous posts so any info would be greatly appreciated.

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There is another lady that lives in the US on this site and shes had great results with her leg, also one lady is 10years with lympheodema and hers has worked too, she had hers done at Oxford, they will be able to tell you if you are suitable or not with a test beforehand, I wish you all the luck in the world , please follow my blog I somehow have got them all muddled up but I have written about it from since the operation which was November 2017. xxxxx my leg measurements were 7.5% before the LVA then 3 months post op it went upto 12%, this can be normal and then 7 months check I was down to 4.5. absolutely bubbling over with joy xxxxx

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I'm so happy for you! I'm in the States & have lymphedema in my left leg as well that occurred 5 years post cancer operation. It happened the day after a long hike with a friend and I was baffled as my doctors hadn't warned me this could happen. It's been a year & a half, and so far I've been able to regulate and keep the swelling from getting into the next stage with the hard tissues. I LOVE my legs though—they were like yours...shapely with small ankles. I want my life back!

I'm far away from Oxford, but now that I know the cost I'm going to start saving my money. When I read that you wore heels and your leg was still fine, my heart leapt with joy for you! I haven't had the heart to get rid of my pretty heel shoes yet. Now I'm thinking maybe I shouldn't. :)

I read you have a blog? Can you share the link? Thanks for sharing your photos!

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Oh bless you, I feel for you, it is horrible when you love heels and feeling womanly, the results are getting better and better for leg after cancer, so if you can get it done you will be wearing those heels again im sure of that. I am still in shock and cant believe as I feel it is a miracle, there are some people I have spoke to who are in the states and have had success with legs, I felt quite depressed when I had the swelling, I love wearing dolly shoes too, and when you look down and see a brown coloured stocking it just is horrible I know life could be so much worse but when you are actually in that situation you don't think about being luckier than others, I am still wearing my stocking as don't want to move forward too quickly but I have been without it for 6 hours and there has been no change at all in my leg, so I am hopeful I will go without it for good at some point, im in no rush. xxx good luck xxxx im not sure how to share the link but if you look you should find my blog I hope I will try though for you, xxx

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Hello AshForever, Ive just found out if you click on my picture it will bring up all my messages to everyone about my experience. xxx

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Thank you for sharing and inspiring those of us looking for hope. I do realize I'm lucky, as odd as it feels to write that out. Had I taken LVA, I would do the same as you and keep the compression going and taking things slow. Best to you! I look forward to reading more updates of yours in the future!

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Hi there, I’m in the states and my son has Lymphedema. Are you on the east? There is a doctor at or near John’s Hopkins that does the LVA procedure and I think it’s outpat so it may not be too expensive. It’s a young black man with a foreign name, maybe African. It might be worth it to meet them or talk on phone. Also it might be cheaper than having to go overseas.

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I'm on the West near Portland, but I'll search LVA at John's Hopkins. Thank you for sharing! If your son had the procedure, then I hope things go well for him—how exciting! It will be several years for me to save that kind of money (was hoping to save for a down-payment on a house but this might have to come first). Now that I know this procedure exists I'll keep watch on how it grows in the US.

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Great legs! Worth all the worry and the expense! I have really appreciated your log of your experience at the amazing Oxford Lymphoedema clinic. I am in Bupa, which costs my wonderful brother about £9,000 per annum, but when I asked if they would fund this op for me, they refused! I am 74, used to be very active (7 Pilates classes a week, walking etc.) and now I have become very sedentary, as I feel so fed up with my disgusting, but so necessary, stockings - and the pain and discomfort in my legs every night. I have a love hate relationship with my black 'Nora Batty's'.

Before my diagnosis I had a rented home in Northern Cyprus, having worked until I was 68 to help fund it, but the wonderful Professor Mortimer, whom I saw at one of his private surgery sessions in Wimbledon, made it very clear that I must avoid heat of any kind, even the soothing warmth of sunny Cyprus - where with the heat comes the risk of insect bites. Even with the maximum precautions to avoid such bites, they always get me in the end! It is possible that insect bites, the cause of cellulitis on two occasions, could be the cause of my secondary lymphoedema in both legs.

May I ask if you found your funding through an insurance scheme? If you did, I might have some ammunition with which to fight against BUPA's unkind ruling. They justify it by saying that it is a chronic condition, and as such is not covered by insurance! But if someone had an accident - and this is an accident of sorts in my case - would BUPA refuse to pay for surgeries that may be necessary as a result of an accident? Insurers, hey ... they never want to pay up for what we have paid for!

I am desperate to have the surgery. I was a fashionista before this nasty condition changed the way I have to dress. I used to travel around presenting fashion shows for various companies, and even wrote columns in newspapers and magazines. And how I loved my shoes ... and I still have them, in the vain hope that one day I may be able to wear them again. I now live in leggings over my black compression stockings, and, because what is squeezed in by the thigh-length compression stockings has to go somewhere, I have bulges at the top of each thigh - not a pretty sight! - and wear tunics all the time to conceal the bulges. I feel as if I am pregnant again ...! Not a good look at my age ... and a tunic and leggings at 74+? Not something I would have imagined wearing, in my previous life.

Never think that just because a woman lives a long time - and 74 is good by many standards - that they suddenly lose all interest in how they look! When my very glamorous mother was terminally ill, she made sure she had her hair and nails done even more often than usual. On the morning she died she put on her make-up, even though she knew she was likely to die that day, and had asked for a manicure the previous night. She died with a gin & tonic in her hand - hands with perfect, beautifully manicured scarlet nails and matching lippie. High standards or vanity? I believe it's high standards! And I hope to be just like her - and ditch the stocking well before my demise.

I want to burn these dreadful stockings that are so uncomfortable and so hot. I want to be bare-legged and feel the warmth of the sun on my white body (haven't sat in the sun since Professor Mortimer advised me to avoid the sun and any kind of heat) and I need to return to my beloved Cyprus. All this may sound very selfish and self-centred, but having had quite a difficult life and worked extremely hard all my adult life - teaching for much of it, and helping so many youngsters to aim high and have careers they never even dreamt about before I pushed them onto the higher education 'escalator' - I feel justified in wanting to be free of compression and discomfort, and to be free of the endless pain in my legs that stops me from sleeping every night.

Well, after all this 'rabbit' you will perhaps need a glass of wine or a gin and tonic, and raise your glass to that wonderful team in the Oxford clinic. I do admire you for taking this leap of faith, and for being rewarded for your courage by having a matching pair of lovely legs! Good on you girl - and thank you for keeping we 'lymphies' informed of your experience and the superb outcome.

Best wishes,

Tina

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Tina I LOVE this post! I FEEL for you so much. Your mother sounds wonderful-you're a truly great creative writer. I'm rooting for you to go to Cyprus anyway and be careful, take it easy. Maybe spend time in the sun but keep it 10-20 mins in the mornings or evenings? Use bug repellent? We may have lymphedema but we also may have just this one life to live. Maybe I'm wrong, but it seems like enjoying life boosts the whole body system. I'm not a doctor, obviously, but my gut tells me you're in love with this place and you need to be there at least once in a while. :)

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Oh Tina, I feel so sad for you. my insurance company wouldn't fund me either, its so wrong, I did have to fund it myself, it is so expensive and feel fortunate I could do it, I did take a chance but so happy I did put my trust in them, I think it is the most horrible condition for a woman, I loved wearing skirts and dresses but haven't for so long now I lived in leggings and the stockings are so uncomfortable in the hot sun, but I knew I had to wear them otherwise my leg just swelled so much and it was so uncomfy, I have never liked sitting out in the sun and still wont but just to be free of the stocking for a few hours is more than I could have ever wished for, I will start to leave it off for longer soon, but feel a bit afraid it will go back to how it was, as to be honest this has only happened in the last 6 weeks, I do feel the re plumbing has realised what it has got to do now, and its working well, very happy , and I hope you manage to get it done too at some point the more people that have it done the more chance it will come on the NHS. Take care and good luck. xxxx

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That was 7 months ago..how time flies..your legs look do symmetrical. .only the gteen dye giving it away. .hope you are feeling happy...wI'll you still have the diagnosis or would you be classed as stage 0 or classed as cured

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I am so Happy I cant tell you how good I feel just so elated. I had every hope it would work but you do take a chance with new medical procedures, and this is quite new in this country but im so glad I went ahead with it, that's interesting but I don't think it is a cure it just manages it better that is what ive been told but if I leave my stocking off eventually and I don't have swelling surely that means its cured!!, im not sure I will ask next time which is in 6 months time xxxxx

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Thanks for sharing these! I am going to ask about this at my doctor appt. I dont know if its a procedure available in the US, but I am glad to know about it.

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