Lymphoedema/ fellow sufferer!: Hello. Joining the group... - LSN

LSN
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Lymphoedema/ fellow sufferer!

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Hello. Joining the group today.

Having good days and bad days

Having fluroscopy mapping with Jane Wigg soon. Excited and nrevous!

x

16 Replies
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Libmeg

Hi from me,hope things go well with your fluoroscopy? Not familiar with this maybe you could fill me in,glad you are having good days x

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irishlass-1

Just looked it up, please come back and let us know how it works for you. I take it you have to pay for it?

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angie10
angie10
in reply to irishlass-1

I'm having one done soon. Have been refered by my Lymphoedema nurse. Its done on the NHS and you don't have to pay for it. Reason I'm having it done is cos she's not 100% sure I have Lymphoedema. Just waiting for my appointment now

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pollyslymph
pollyslymph
in reply to angie10

could you tell me how you got flouroscopy on the NHS- I was told they did not do it?

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angie10
angie10
in reply to pollyslymph

hi pollyslymph, I saw my lymphoedema nurse the other week and she said she wasn't 100% sure that i have lymphoedema so she said i would have to have the flouroscopy done to confirm it. From what i gather she did some sort of skin test with her fingers and as i didn't respond the way she said i should have, she decided to send me for the test. it seems that the 'finger test' is the way they diagnose it!!!!!!!!!!!! not really sure what thats all about but hey......i'm a novice here :) and yes, they do it on the NHS otherwise i wouldn't have been refered. maybe the reason that i've been referred is that she wasn't sure. Sorry for the lengthly reply.

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pollyslymph
pollyslymph
in reply to angie10

thanks for the speedy reply....fingers crossed you don't have lymphoedema.......perhaps your system is just sluggish... can I ask which are is your NHS?

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angie10
angie10
in reply to pollyslymph

I hope so too. i live in Bristol but i'm sure it should apply everywhere. i take it you're seeing a lymphoedema nurse and if so maybe you should press for the flouroscopy. good luck

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pollyslymph
pollyslymph
in reply to angie10

I asked a year ago....the thing is - it is lymphedema....cancer related.....and i wanted the flouroscopy to take to italy where I HAD SPOKEN TO A DOCTOR THERE WHO MAY POSSIBLY DO THE OPERATION ON MY euHEALTHCARD......sINCE THESE OPS ARE ONLY AVAILABLE PRIVATELY here in UK and expensive. - or in Wales on NHS....I had posted last summer here on this site after someone had the op and told me how to apply. My lympha nurse just measures the leg and gives the stockings....they really do not put much faith in the ops because they haven't researched.....I did a lot of googling and its the same in USA....There are even marches with so many people suffering from Lymphoedema. Since you say you are a newbie to this....i can only pray that your health is good in other ways......I've really been dormant lately with the issue as the stockings make me forget I've got it but come summer I am sure i will be irritated with the heat....I'm rambling on now....thanks again!

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angie10
angie10
in reply to pollyslymph

The reason (I think) that they don't put much faith in the op is maybe because the NHS haven't done much research into it. But this particular op has had, not only a lot of research, but very good results. (as per the private sector) This has been done very successfully in Japan for many years with very good results. The NHS is in dire straits at the mo and they will not be putting money into this. :( And you're right, the treatment here seems to be measurments, compression tights and moisturising. And like many others on here, I too have a lot of health issues and this on top of everything else gets me down. Not to worry, I've learnt to plaster a smile on my face and off I go :)

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Chocolate-e-clare

Hi Lizviolin. Welcome! Let us know how the mapping goes. I'm a therapist - I want to do this training, but am in the US and would have to fly way north to get to it. It's on my bucket list. Want to hear of your experiences, and how helpful it is for you and your therapist. Cheers. Let us know about your good and bad days - people here have great advice, for many situations.

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Hobbs123

Hello Lizviolin, I've not heard of fluoroscopy mapping, what's involved? Hope it goes well and as a fellow sufferer, I'd be interested to know how successful the procedure is.

Best wishes

Jan

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CCT67

I have had the fluoroscopy mapping which is undertaken via ICG Lymphography scan - it's tells you all you need to know about the pathology of your Lymphoedema limb (my legs) and the drainage pathways. I have few pathways - I have no lymph vessels in my right leg and abnormal ones in my left, and the lymph valves in my ankles and lower leg are failing to work properly/didn't develop normally, and my groin nodes aren't working properly, hence lots of oedema in my legs. I have primary LE so parts of the Lymphatics that I should have developed as a child sadly did not

Cat x

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Hidden
Hidden

Hi everyone!

I'm puzzled re NHS funding for lymph mapping. My nurse said that I'd probably not qualify as mine is classed as mild. So I'm paying for my mapping...............maybe I should have pushed more for NHS funding? Sometimes it's hard to know what to do isn't it.

I will let you know how it goes ...it's next Sunday! Not looking forward to the 'medical'....I want to bury my head and not hear things sometimes. At least my husband will be there too....shoulder to cry on etc!!!!

Liz x

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angie10
angie10
in reply to Hidden

Hi Liz. Let us know how you get on. I'm waiting for an appointment also. Sorry you've had to pay for it. Thankfully I'm getting mine done on the NHS.

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Lynne-byn

Hi huni how you coping? I'm newly diagnosed still waiting for 1St appointment, thanks to this site & the lovely people on it I'm learning about lymphedema x

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trisho41

Hi

How did your mapping with Jane go? I'm hoping to have it in a month. Hope you had good results!

Trish

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