Confused about if I need a sleeve - can anyone help?

Hi All

I was dx with mild lymphoedema ( 19%) before xmas. Saw my lovely nurse specialist who said I just needed to do the exercises and did not need a sleeve. This appt was private and she was the bcn whom I had through all my treatment.

In the meantime my nhs appt came through and I went to a clinic and was seen by a nurse ( just a staff nurse) . She was like Hitler reincarnated - very cold and bossy!!!

Anyway she said I need a sleeve and I have to wear it every day all day!!! I ended up crying because this was not what I was told in the first place and my arm is no worse at all. SHe really upset me and told me I was “lucky” that my arm was only mild!!!

I am going to ring my private nurse specialist up tomorrow and see what she says.

Can anyone help with this - has anyone with mild lymphoedema been told they dont need a sleeve??

Love to all

Alise

That sounds really harsh of her, does she not realise how upsetting it is - sorry I cant help, hope you get your answers soon, Im off for appointment in a week or so, really dont want to wear one either
xx

Hi alise

You poor,poor thing! Sounds like you just got the bin-end of NHS lymphoedema care! How horrible for you. Some ‘health professionals’ still have all the people skills of Torquemada.

Where do these insensitive people get their ideas from? Lucky? Lucky? How did she work that one out? Oh, I see. Lucky to have lymphoedema on top of having breast cancer. And if she meant, as I suspect she did, that you were ‘lucky’ it’s not any bigger than 19%, she should keep that opinion to herself. If you’ve got it, you’ve got it 100%!

Alise, that makes you one of a large minority who gets it (like me). It’s still incurable, but not untreatable, altho’ a lot of clinics still dish out off-the-shelf sleeves and a sheet of exercises and consider their job done.

19% sounds as tho’ yours ought to be classed mild to moderate, anyway.

Yes, it’s hard to imagine anything uglier than the bog-standard NHS sleeve (usually a Medi). (It’s possible to get much nicer, and often better fitting ones privately, by the way). However, you may find you actually are more comfortable wearing one (assuming it’s fitted properly) for a lot of manual things - housework, shopping, driving, stuff like that.

Some people, once their arms have settled down, do find they don’t need them all day, or only for certain tasks. It’s very much a case of suck it and see, I think. We don’t have identikit lymphatic systems, so it can be a capricious thing to live with. (BTW, I’ve got it in both arms and I’m sitting here typing this to you without wearing any sleeves - can’t be fagged to put them on THIS early in the morning! And I know it won’t aggravate my lymphoedema, so I don’t give it a second thought. I’ve also been told not to get obsessed about wearing mine - ie, the sky won’t fall in if I schlep around half the morning without them!

I think it’s a good idea to get another opinion from your nurse specialist - does she have training in lymphoedema? (You are unlikely ever to get to see a doctor about this; very few are interested in it). But unpleasant as the NHS lymphoedema nurse was, she may be correct about the sleeve-wearing, at least in the short-term. If you really cannot get on with her, and you can afford it, you can always get help and treatment from a private lymphoedema therapist and by-pass the NHS completely.

Apologies for the rant. I feel so angry for you. Good luck, alise -and you too, lisaf. Let us know how you get on, won’t you?

X

S

Hi Girls

Thank you so much for your replies.

Have spoken to my private nurse specialist today whom I saw originally and she said to go back and see her for a review but said I do NOT have to wear a sleeve every day and she was really angry at the way I had been treated.

She said carry on with my exercises and just wear it for anything heavy. Isn’t it shocking that had I not got private health through work then I would have just had to take the crap that this awful woman dished out and would have gone round wearing a sleeve all the time , getting really upset when I didn’t need to???

Will let you know what happens when I go back and see her and am contemplating reporting this awful other woman.

Thank you all again and will keep you informed.

Love Alise

Hi alise

Bahons here again.

Tell me to but out if you like, I’ll understand, but I can’t reconcile the terms ‘mild’ and ‘19%’. Perhaps your arm isn’t as big as you’ve been told it is? That would be good!

If I had a 19% arm, I think I’d be screaming for all the help going (Manual Lymphatic Drainage (MLD), Complex Decongestion Therapy (CDT)) as well as a sleeve. (I think my own worst arm is about 12%).

I do hope you get some clarification on exactly where you stand - and soon. That would be a great help to you, I’m sure. And perhaps if your nurse specialist has modified her stance from ‘not needing a sleeve’ to wearing one for ‘heavy’ work, you may be getting a bit nearer some kind of meaningful concensus on the state of your arm.

And I agree, it sounds as tho’ you may have have to make a formal complaint about your NHS treatment. It really wasn’t good enough.

Take care

X

S

Hi Bahons

Thanks for replying again!

I have been told both by NHS and privately that they will not think of doing MLD until your arm is 40% or more - they say you don’t need it?!

I am interested to know your arm is 12% - maybe they have done mine wrong - to put it another way at the worst point it is 3cm bigger than my normal one and at the best point 1cm. Below my elbow it is normal. It’s all in my upper arm.

DO you know how many cms bigger yours is as I am finding this all very confusing.

Going back to see nurse specialist next week whom I trust and who told me to try the exercises for a while and see if it helps but never mentioned a bloody sleeve!!!

As for the nurse from hell I saw on the NHS I feel a letter of complaint coming on - where do they get these people from?!

Could you let me know about your arm measurements if you dont mind and also has yours stayed at 12% and not gone any worse?

Love ALise x

Hi

Hope you don’t mind my butting in. When I was first dx with lymphoedema, my arm was 20% and was told by lymph. clinic 20% and over was classed as moderate. So if your measurements correct you’re pretty close to this. I was advised to wear sleeve all the time and if managed to reduce to under 10% would then be able to wear sleeve less often.

I was told the same re MLD won’t do it unless are 40% plus as I’ve said to Bahons2 in past, horse and bolted come to mind.

Hi Alise - (and hi too Lynni - no you’re not butting in, lovely to hear from you; I’m about to serve up one of my rants!!!) - just caught your post - was on the point of going out and must leave soon. Glad I didn’t upset you.

40% is just a random figure, driven by financial and not health considerations and exacerbated by the lack of NICE guidelines for lymphoedema treatment (which basically means that lymphoedema clinics can dish out any old rubbish as treatment with no recourse available on your part), as far I am concerned. This attitude says it’s OK to go around with an arm 39% bigger than the other for ever and never have any treatment. And it’s not. The extra weight pulling on your shoulder will damage it, the skin will be stretched so tight it will be in constant danger of cracking (and introducing infection), there will be severely limited mobility due to the swelling. I could go on…

Setting a 40% threshold for treatment just keeps costs down, nothing else. It makes no medical sense at all. Everybody with lymphoedema needs some help. Only the very mild cases don’t need active treatment, but only the very bad ones seem to get it.

If your swelling is all in your upper arm, an off-the-shelf sleeve might not work for you (if, in fact, you do need one - we’ll get to the bottom of this one day!) - custom made could be the answer, but the NHS may dig their heels in over paying for that - perhaps this is what your nurse specialist was driving at when she said you didn’t need one…?

I’m sorry, alise, lynni - I really must go out now. I’ll post more later and I’ll include the latest measurements for my arms, etc.

Watch this space!

X

S

Thanks Bahons and Lynni!

Hope you can come back later with arm measurements Bahons as I am now even more confused!!

I have just been to my GP about getting an exemption certificate and told her about all this.

He said I should NOT wear a sleeve as it was only mild and the psychological impact ( ie the reminder of bc 3 years after treatment) would be far worse than the small - yes she said small risk of it getting worse.!!

She said just do the exercises?

I feel like I am going mad. Basically the only medical person who thinks I should wear one is the nurse from hell in the NHS. However I know other people are told to wear one. DO you think it just depends who treats you as different therapists have different views??

Love ALise x

Hi there - I’m back.

Have dug out the measurements. These were done on 6th Oct 2008 and start at the wrist (I don’t have hand swelling). You have to bear in mind that I have swelling in both arms, altho’ in the right arm it is negligible. I’ve been told I should be able to manage without a sleeve for the right arm much of the time, but as the left is already bad, I feel I can’t take much of a chance with the right, as it already has to do much of the heavy stuff. I’m also left-handed.

All measurements in cms.

Left/Right
16/15.5
26.5/25.5 (Taken 15 cm up from wrist)
26.5/25 (Taken 22.5 cm up from wrist)
30.5/28 (Taken 34.5 cm up from wrist)
32/31 (Taken 45 cm up from wrist)

At the time, these measurements were taken, no volume calculations were done. This is because they were done solely for the purposes of obtaining a sleeve.

I’m basing my estimate of my left arm being about 12% bigger (in volume) than my right as it was slightly worse a couple of years ago when it was calculated at 14% bigger.

I’m afraid I’m going to disagree with your GP as, untreated, lymphoedema almost invariably worsens. I can agree that the psychological impact of a sleeve is not good, but then neither is that of an arm is that continues to swell, as yours may do, alise.

GPs are given very poor training in lymphoedema management, I’m afraid. Not sure about bcns - they may be a bit more clued up these days.

Sleeves are used to stop swelling getting worse, or to maintain an improvement that has been achieved by other means. That is why they are prescribed. They are primitive, but most other ‘gold standard’ lymphoedema treatment is out of the ark as well. It helps and it works, but high tech, it ain’t.

If you can’t face the NHS lymphoedema nurse with the charisma by-pass again (and I wouldn’t blame you one little bit!), it’s possible to seek help and advice from an independent therapist (would your insurance cover this, perhaps?). You can find one through this website: mlduk.org.uk

Hope this helps, alise. Post again, or pm me if you like.

X

S

PS left arm has been like this for about 4 years now. It really got worse after a particularly brutal mammogram, but was already slightly swollen beforehand. It now seems to be fairly stable, but I do get regular MLD and I’ve also got a Low Level Laser that I use to treat it as well. I’ve more details about that if you want them.

X
S

When I was given my first sleeve, I had to take it off after an hour as it didn’t fit properly and it was causing my hand to swell. My next appointment was in 7 weeks and it couldn’t be brought forward. Lymph nurse advised to continue with exercise and massage until the next appointment, and hopefully this would still help. In them seven weeks my arm increased from 20% to 33%, I definately needed more that exercise and massage to manage my arm. I have since been able to reduce my arm.

I do wear a made to measure one as alot of my swelling is round the elbow.

You must be really confused, GP telling you one thing, nurse from hell another thing. A booklet given to me by lymph. nurse states “the four cornerstones of treatment to help manage your condition are: skin care, compression, exercise and massage”.

I really hope you can get this sorted out, its a shame the nurse from hell isn’t as supportive as she should be.

Take care hun xxx

Hi Bahons and Lynn

Thank you agin for all your info.

Bahons - your arm seems slightly less than mine.

I have contacted my burse specialist and have a private appt on February 20th with her for a review.

SHe said just wear the sleeve if I am doing anything strenuousbefore that. She said that not wearing it would not worsen my arm!!!

I am going to interrogate her when I go and see what’s what and I will let you all know.

Thank you all again

Love Alise x