Its a while since I was on this site, wow what a difference! I cant believe there is a forum just for lymphoedema! is it sad to be thrilled!!
I spent last night looking through all the posts and could identify with lots of the comments there, I have spent a fortune over the last 3 years on anything and everything that I thought could help (gullable I hear you say!) but have now accepted that there is no miracle cure (yet!).
I managed to find Michael about a year ago and whilst it is bit of a trek it has been worth every penny as my hand/arm is as good as it is likely to get. He uses LL laser, does MLD and to finish off does a mean kinesio tape for good luck. He persuaded me to wear a sleeve (those horrid thick ones but Grade 1) until 7pm when he says it will start doing more harm than good (no idea why, but who cares so long as it comes off!)
I go every 2/3 weeks and thought I had it sorted but as usually happens to me it was too good to last! because the NHS doesnt pay for treatment unless the condition is severe (and costing a fortune to treat!) and the credit crunch means that his private patient base has reduced drastically he cant afford to stay in business!
Why can this happen? There are so few MLD practitioner’s as it is and they cant afford to make a living because all the patients who need the treatment cant be referred until they are so bad that they cost the NHS a fortune, whats all that about?!!
We all deserve better but in the meantime it is good to find a group to share my thoughts/feelings with (if you dont mind?!)
Hi Flynn’s mum,
Good to hear from you, we shared some threads on lymphoedema ages ago.
Can’t say much now as packing for Italy, leaving at 4 am for the airport.
I’m pretty fed up with my lymphoedema have just got new truncal swelling.
I’m looking into laser treatment and Bahons has been very helpful about her experiences.
My sleeve is always off - maybe that’s why my lymphoedema is so bad!!!
Bye for now,
Rowena
Yes, it’s great to have a lymphoedema forum, isn’t it? I’m sure we’d all love to hear your thoughts and experiences.
Michael…now that rings a bell. Was/Is he based in N Hampshire? I had heard through the grapevine that he was getting good results with the hand held laser. What a shame he cannot continue. Whereabouts do you live, Flynnsmum? Have you tried searching www dot mlduk dot org dot uk for another mld therapist you could reach? Although they may not have a laser, of course.
I agree that the NHS’s policy on lymphoedema is ridiculous. Anyone who knows how to look after their bad arm by inference knows how to make it worse. If you neglect it and let it get huge and infected, the NHS will, ultimately, treat it. If you spend your own money to keep under control, you end up poorer and get no thanks for it or financial assistance. Madness!
Like you, I try to keep my ear to the ground for anything new in the field of lymphoedema research, but progress seems to be pitifully slow. We’re just not glamorous enough, people!
Rowena, did you know you can get compression garments for breast/truncal swelling? The MediUK ones look like heavy duty crop tops - glamorous they ain’t, but they seem to make people a lot more comfortable. Your lymphoedema nurse/clinic should be able to get one for you. The one I had (and still wear occasionally - I’m having chemo at the moment and I’ve been getting a puffy shoulder blade as a result) was a MediUK Lipomed.
why oh why dosnt lymphodemia get more funding .its a life long condition for most people after surgery .and we do need to be seen more often that we are .my own district will see you every three mnths if you are having problems but due to funding if you present as being fairly ok ,you get to be seen 6 mnthly . too long a time im my book as problems need to be assessed as they happen to prevent infection .as for the sleeves im wear mine for as long as i can bear too usually around 4 o clock !! but the vest type garment that i was givne last time as i have spread into my chest wall is just like a long bra and very tight so that usually comes off by lunch time !! have not heard about taking sleeves off before 7 ? will ask next time i go to clinic . hope everyone is doing ok ,we really need to get some more recognition on lymphodemia and conditions. from the medics who dismiss this as nothing ! let them try living with it . lynn x
S - Michael is based in Winchester, I found him through the MLD website and its well worth the 60 mile round trip to have the laser treatment. I can probably get MLD somewhere (so long as I can pay!) but the whole thing is sheer madness, he is a top class practioneer yet can,t make a living despite the desperate need out there!
I agree, total, total, madness. NHS short term thinking and planning at its absolute worst. There is huge need for this treatment - all the time there are not even any NICE guidelines for treating lymphoedema, we sufferers can expect it to be at the bottom of the NHS food chain.
The thing that most upset (and still does) me when I first got lymphoedema was not the condition itself (although I was well miffed about that, I have to say), but the total indifference to it, and ignorance of it, from every ‘healthcare professional’ I came across, including the ones whose treatment had precipitated it. It was nothing to them - a mere trifle.
Better get off my soapbox now…good luck in finding another MLD therapist. Have you considered buying your own hand held laser as a last resort?
hi ladies i had a masectomy 5 weeks ago .i have just phoned the breast care nurses at the hospital to say i have got a swelling just above my wrist i wondered what was causing it she told me it sounds like lymphoedema she gave me appointment for next week and said about mesuring my arm but didnt exsplain hat it was .can some body please advise me about this thanks lynda
Hi I have read this thread with great interest, I have lymphoedema at mastectomy site and under my arm, it hangs like an extra breast all around my armpit. I was given a ‘silver’ crop top bra and some foam pleated material to act as a drain which i wear inside the ‘silver’ bra, only thing is the largest size they do is a 38 and i am a 40 so by the end of the day the dratted thing has rolled up and is cutting me in half!
My husband has been taught how to do some simple lymph drainage on my back which bless him he does for about 5 mins every night though he is really meant to do it for about 20 mins!
I wish there was a ‘Michael’ in Staffordshire, i would love someone like that, what a shame he has not been able to continue, he must be a great loss. My sugeon still does not accept that i have lymphoedema and always refers to my ‘fat’! It was through my district nurses that i got to see the lymphoedema clinic and the wonderful nurse who has had 24 years working with lymphoedema and she recognised it immediately thank God.
I shall look up that MLDUK website and see if there is anything near me so thanks for posting that.
Sorry to hear you’ve developed lymphoedema and are so uncomfortable.
Sounds as tho’ you’ve got a great lymphoedema nurse there - shame about your surgeon!
Could you ask for a custom made ‘crop’ top from your nurse? If the one you’ve been given rolls up and cuts into you by the end of the day, I imagine it might be doing more harm than good.
Are you near the Worcestershire border by any chance? I know of a brilliant lymphoedema therapist in Worcestershire - can send you her details by private message, if it’s not too far for you to go.
Hi Bahons, My sister in law lives in that area she lives in Inkberrow, i am in Stafford so a bit far for me to travel.
Someone else on this site mentioned another bra which i have sent off for, it is longer so may not ride up so much. Thanks for that it is really kind of you to think of me.I should really try and lose the 1 1/2 stone i have put on in the last year on Arimidex, If i eat more like on holiday i put on an extra half stone which is the devil to shift, it is an uphill battle, I was on a drip for 3 days in March not eating and i still put on 2lb!
Oh well, will try that site and see if there is anything out there for me and also ask my lymphodema nurse on Friday if she knows of anyone.