Clinic app

[Tamlin]

Hi

What should I expect at my first appointment at lymphedema clinic ?

[Jennymary]

I had my first appt June of last year, I can't remember all the questions I was asked but the nurse measured both my arms, all OK, but she told me that my Lymphodema is in both breasts, she told me about the taping available, but, sorry, I can't remember much else, (i've had other, non cancer/lymph related) this year to deal with, but one bit of advice I would give is to take a friend with you, also before you go if you think of any questions write them down take them with you and write down the answers, also if you're unclear on anything ask the medical people to write it down for you, good luck

[bumpy1]

I had my first appointment in June after suffering all my life and trying to be referred for the last 8 years I was referred to Derby At the appointment I had my limbs measured and was giving properly fitted compression stockings I have worn stockings for 8 years but they didn't fit very well It was lovely to talk to doctors who understood my problem I had blood tests and now am going for 3 monthly appointments to monitor my condition Within a week of my first appointment I had my next one in the post and also another for a telephone consultation with the nurse which is booked for today It is so good to know that someone actually understands my condition and that at last I have the support I need

[Hidden]

I can't actually remember my first appointment as it was 5 years ago but each time I visit since then, my arms are measured. I am asked his I am hoping and how I am getting on with the compression sleeves. She advises on using creams and exercises. I feel I can talk to my lymphedema nurse as I do a friend. She is very considerate and friendly. As previously said, if you have any questions write them down and don't be frightened to ask.

I hope you have the same good experience as me and that your condition improves soon xx

[lovesradio]

Hi Tamlin, at my first appointment the circumference of both my arms were measured from fingertips to shoulder at roughly 1.5in intervals. Then the results were fed into a computer which calculated the % difference in the circumference. I presume the same thing would happen with lower limbs. The % difference determines whether the LD is mild, moderate or severe and that then influences treatment options. I was offered a suitable compression sleeve 'off the shelf' but that will depend on availability. My lympho physio then gave me advice about skin care and arm protection against sunburn/trauma, showed me how to do SLD, and gave me a leaflet about this. I was seen at 3-monthly intervals at first, then 6-monthly, then annually. Now I am self-managing but can contact the physio if I have any problems. Good luck with getting good treatment x

[Anne16]

Hi Tamlin,

I had my first appointment 8 years ago! I first saw a vascular surgeon who then referred me to the Lymphoedema clinic he was setting up. Then and every 6 months since, the nurse measures both of my legs and I am prescribed made to measure hosiery as my legs do not come within the parameters of off the shelf ones. In between times, I visit the chiropodist every 4 weeks and when I can spare the funds, I have MLD from a practitioner close to where I live in Birkenhead but most importantly of all, I moisturise my legs at least once every day to keep the skin in good order. Hope everything goes well for you"

[gillannan]

I can only remember having my arm measured and talking about the texture of my arm and the need for using a moisturiser daily.

[claire_gittins]

my first appointment , my legs got measured and then they said pick up from the chemist in 3 weeks but come back in 6 months to be measured again . i have never been to a special clinic only seen people at leg club. i have had no information on what to do with my foot/ ankle. i feel the first appointment i should of had information about it as then i could look aware of what to do to look after it . Claire x

[Lynne-byn]

I'm waiting to be seen also I hope it's a good experience as so fed up x