1st appointment

[Tipsy18]

Have been given appointment for lympthoedma of left arm on 22nd December at last I have got my foot in the door wondering what to expect.

[Lynora]

Write down any questions you may have - there are always lots!

[Lintam]

Hi, i have lymphadema in my leg due to cancer surgery this year. My visit was the nurse looking at me leg, pinching the skin on my foot, then measuring my leg up for a stocking and that was it, apart from answering any questions I had x

[KJB72]

My 1st appt included full medical history, size/volume measurements of my leg, visual examination, skin pinching of my foot & ankle, ultrasound & measured for grade 3 socks - all with the nurse. She was brilliant. Then saw consultant who has referred me for lymphangiography - see where/what causing the blockage/problem. Test 15th Dec, waiting for appt to see consultant again after this. Feeling reasonably ok about it all at the moment. This was at the QMC.

[Niktcx]

Wow you were lucky to be offered so much at your first appointment, I just had my leg checked for pitting and sores, measured for an off the shelf stocking. it's taken 7 years to get the tests to see where it's not working and now it's actually too late to see as the main lymphatic channel has broken down so no longer works. I have also found out for my leg I need flat knit with a toe cap stockings.

My advice if you can afford £700 go straight to Oxford to see professor furniss he is the top guy to go to, he'll do a green dye test that can determine if surgery is an option. He can do small bypasses of the lymph vessels. Have a look at Oxford Lymphodema Manor Hospital. I wish I had gone to him 7 years ago as I think he may of been able to operate if a blockage had been found earlier. Either way you'll find out what is going on in your leg.

Also find yourself an MLD nurse, the NHS don't seem to offer massages, the earlier you get treatments the better chance of managing your condition.

Hope this helps you, good luck.

[angie10 in reply to Niktcx]

Hi Niktcx. I have read your post with great interest. Will be doing some research into Oxford Lymphoedema Manor Hospital and Prof Furniss. Thanks for the advice

Good luck

[lizmurphy61]

my first appointment was on Friday and I had a nurse he was brilliant he had my full metal history in front of him hw then checked my legs and feet he measured me for tights and has also ordered scans of my legs and tummy I have to phone him when I get the tights must admit I was gutted when he said I had it it's still sinking in he gave me cream and shower gel when they are finished I have to get them from the doctors

Good luck x

[lovesradio]

You are likely to be asked questions about your medical history, then have circumference of both arms measured from hand to shoulder at about 1cm intervals. The results will be fed into a computer program and the difference expressed as a % between the lymphie arm and the non-lymphie. You will probably be given advice about skincare, and a demonstration (and maybe a leaflet) of simple lymphatic drainage. Depending on where you are, you may be given a compression sleeve there and then, or be sent one, or given a letter to take to your GP so that you can get them on prescription.

Hope this helps and good luck x