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Is this lymphedema?

25 REPLIES 25
elinda45
Member

Re: Is this lymphedema?

Hi again, I do have the DVD and my nurse has shown me the same SLD as on the DVD. What I was wanting to know was more about the SLD you can do on the arm itself and the hand. I thought by going to an MLD therapist I could see what she does and copy it at home.

It has surprised me how well the SLD works, my arm feels so much better. I'd like to just go that bit further with it so I can trial without the sleeve.

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Re: Is this lymphedema?

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elinda45
Member

Re: Is this lymphedema?

Unfortunately, the risk is life long. So keep up with precautions and hopefully you'll never have any problems.

Make sure you don't have your blood pressure taken on that arm or injections given in it. Suncream applies yes. Any cuts clean, spray on something like savlon and cover. No hot baths, or saunas. Nothing tight on that arm.
No heavy lifting with that arm (over 21b I've heard is the guide).

May be a good idea to keep doing the arm exercises.
Elinda x

wizardpoo
Member

Re: Is this lymphedema?

I should probably ask my doc this but don't think he has much knowledge on lymphedema stuff.So wondered if any one here could advise me.
I had WLE and Sentinel node stuff done,which was clear 4.5yrs ago. Was only told then to not get scratched or cut on that arm for what I assumed was 'for a while' No other info given but didn't ask.But then if you don't know what to ask about, how can you!! anyway, does anyone know after this length of time does the suncream/cover up message that I have seen on here still apply? Is it a lifetime thing or after this long, not an issue. Many thanks

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Re: Is this lymphedema?

am with you on the need for far more research being needed.It is shocking the lack of knowledge that is out there,and that is from doctors and bcn's ! What also concerns me is the fact that breast cancer sufferers are not routinely given enough info about lymphoedema. It's as if ah you have got over your cancer and we have dealt with that we don't have to bother you with this ! I am sure there must be a huge under reporting with cases of lymphoedema , I wouldn't have known to do anything about it if it hadn't been for this forum as I was told " ahh it's just one of these things and will settle down ! "

We have a nurse that works out of a local hospital,has all sorts of patients not just breast cancer ones. The mld works so effectively for me as my arm mainly behaves itself but also have it in my breast and side and having someone else doing a massage for you just appears to be far more effective in getting it shifted.

Sandra x

elinda45
Member

Re: Is this lymphedema?

I've got the autumn newsletter form the lymphodema society. In it is an article on low-level laser treatment and lymphodema. It says that:

'its application is particularly beneficial when there is fibrosis (hardening) of the tissues .... in reducing the swelling, softening the tissues, improving scars and improving how the limb feels'.

It does though point out that :
'if there is little or no fibrotic tissue - there is little point of laser treatment'.

More generally on other treatments for lymphodema it says that:

'there will never be large volumes of strong evidence from large scale clinical trials for any of the range of treatments for lymphodema (as there are not the funds to conduct them) so often decisions need to be made on the best available information '

With 1 in 9 women now developing breast cancer there will probably lots more of us around with lymphodema. Seems incredible to me that this hasn't been researched.

elinda45
Member

Re: Is this lymphedema?

I want to have MLD so I can master the technique for myself. My nurse is lovely but time is always limited so showing me SLD was a bit rushed. I do find that the SLD helps although I was have to say i was sceptical at first.
Sandra - to you go to a clinic or is there just one nurse as in our area?

Positivethinker - I wouldn't have thought that one treatment if your hand is swollen would be enough. My lymphodema nurse has said I can trial without a sleeve/glove now my lymphodema is under control and do the SLD twice a day.
Did the therapist you saw think it was definitely lymphodema? Did she shed any light on what the services are like in Spain for lymphodema?

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Re: Is this lymphedema?

Obviously a huge difference in range of treatments offered re lymphoedema across the UK. I "only" have it mild but I get MLD on the NHS and have has a session a month for the last year but that is being reviewed and they want to squash us in compression garments amd only give us it every 6 months but a block of treatments. What I have been having works for me so don't want to be a guinea pig !

The lymphoedema I have in my breast when it goes like a hard lump is immediately sorted out by the MLD and it is amazing how it softens up after just one treatment,for me it is an instant thing then try to keep on top of it with self massage,and the monthly top up just seem to give my lymphatic system a boost. I have enquired about going private to make sure I get my monthly fix ,unlucky that my nearest MLD therapist is 40 miles away and the cost for an hours session is £40.

Sandra x

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Re: Is this lymphedema?

that's very interesting Cavabien. The way you put it makes sense about breaking down fibrosis. thats good that there is something out there for when it is further on.
I want to the mld lady and my OH asked a million questions about her qualifications. Anyway I had an MLD. It felt nice. Cant believe anything that gentle could shift anything. (45€) it appeared to shift it slightly as she was doing it, but seems same now. Though I dont expect it to work overnight.

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Re: Is this lymphedema?

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Guest user
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Re: Is this lymphedema?

Hi.

Just a little information on the "electric shock treatment"

This is a well documented le treatment in Norway which really helps to soften the fibrosis,

Sorry - no wizard treatment


OEDEMA REDUCTION
On the level of the interstitium, DEEP OSCILLATION® causes a
»Shuffling« of the basic substance, thus promoting the removal
of interstitial fluid as well as content material. Interstitial septa
and fissures are kept open by the mechanical activation, which
helps interstitial drainage. This significantly reduces both local
oedema and aseptic inflammation. Proof was also established of
a significant reduction in swellings in the area of the wound, due
to the treatment. In chronic conditions the treatment helps to
disperse fibrosis and to diminish hardening of the tissue.

Cavabien

elinda45
Member

Re: Is this lymphedema?

Julia - I hope it goes well tomorrow. Don't be afraid to ask questions or ask to see qualifications etc.
Not sure cost wise, I'm planning to see an MLD practitioner soon over here.

I was told by my lymphodema nurse that only the worst cases get MLD on the NHS. As mine is mild (thankfully), all I can say is that the rest of the care has been good and I can ring her anytime if I have concerns. It does though seem to be a very underfunded part of the health service.

Guest user
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Re: Is this lymphedema?

Yeah sandra, and the frankinstein style treatment was a mere 120€ per hour!!! So if I take what has been offered so far to start your list.
*Anti inflammory pills 600mg 3x a day
*Electric shock treatment

On the plus side. I followed a link through this site to find a local specialist and put in my area (of spain) and am seeing an english MLD lady tomorrow, private €45. However, my E111 covers some state care and I am now referred to a local clinic so I should get an appointment soon for state care. Wonder how the care compares to the UK. I will keep you all posted.
Julia xx

Guest user
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Re: Is this lymphedema?

Like the sponge scenario Norberte, I was told to view it like a drainage system, take out some of the drains,eg lymph nodes then you compromise the sysem and as you don't know how many lymph nodes you have in the first place any messing about with this could have conseqences.
I too have been told that being overweight doesn't help the cause as the lymph system can't work so effectively. Ouchey ouch for electric shock treatment though Julia,haven't heard that before. We should compile a list of stupid treatments and statements that so called health professionals offer up to us sufferers,thank god for this forum !

Sandra x

Guest user
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Re: Is this lymphedema?

yes it does help. It is worrying that the doctor didnt see it that way. There is a norwegian guy here that does electric shock therapy as a way of unblocking the lymph system, but I havent heard of anybody having this, so I will stay away. Years ago, i did have ultra sound on a swollen ankle to reduce that. But i haven't heard of ultra sound to treat lymphedema, except in the way you describe to "view" the skin. I hate this so much. I feel that if i could get myself thin, maybe the layers of sponge would disappear and dispel the fluid.
Julia x

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Re: Is this lymphedema?

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Guest user
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Re: Is this lymphedema?

I have followed your recommended link and found a (just one) english lady in my area qualified in MLD. I shall call her asap. I have been referred to a place covered by the NHS,but told an appointment couild take a couple of weeks, but will get going with her as I really want to get this sorted asap, especially as I dont wantto be wearing the sleeve permanently (when i get one that is). My hand is really getting me down now. I feel like an old lady.
Thank you Elinda x

elinda45
Member

Re: Is this lymphedema?

hi there

Whoever you see, please make sure they are aware that this could be lymphodema. Both my GP and the physio I have been seeing have extremely limited knowledge of lymphodema. I have to had to brief them on it!

Obviously what you don't want is any sort of massage on the arm or arm pit area unless it is by someone who is a fully qualified manual lymph drainage therapist. I am planning to go to one in the UK but first have checked that my lymphodema nurse knows them and that they are fully registered.

I have just seen that on MLD UK they have a register of people both in the UK and overseas. You can click on the map in the area of Spain you are in. It isn't a fail safe by any means but better than nothing.

http://www.mlduk.org.uk/therapists/

Don't hesitate to ask them questions about qualifications, registration etc when you get there. Any good practitioner won't mind at all.

take care, Elinda x

littlemrs
Member

Re: Is this lymphedema?

Sounds like your young Dr needs to consult his text book. Apart from Onc I haven't met a Dr who knows anything useful about lympho. Backed up by my BC nurse who gave me a leaflet to give Dr if i suspected I had infection in lympho area! Drugs aren't going to cure it, pressure sleeves and lympho massage are the answer. I hope you get it sorted.

Guest user
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Re: Is this lymphedema?

Hi Ladies
Just been to the local state hospital and after 4 hours and a blood test to rule out thrombosis, I have been referred to make an appointment for some lymphedema treatment. The doctor has suggested 600mg of ibuprofen, 3 times a day for a week, to get me started till i see someone. I will do it as long as it is harmless, but will get a friend to check the appointment is for a lymphedema specialist and not any physiotherapist.I do spend alot of time in spain, so doesnt hurt to get on their books so next flare up, I can go straight to therapist.I will also tell my uk nurse and see someone when i get back, just to cross check everyone is singing from the same songsheet.
Have to say though, I am feeling inclined to believe you ladies hold more answers than the young doc, I just saw.
Night all xx

elinda45
Member

Re: Is this lymphedema?

As Julia says they won't help if it's lymphodema. As you don't have pain it doesn't sound like a sprain for example. If you decide to take any anti inflammatories please remember to take with food.

Try to keep the arm cool ie. don't have bare skin in the sun. If it is lymphodema then swimming is supposed to be very good.

take care, Elinda x

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Re: Is this lymphedema?

Hi positivethinker

I'm butting in here but anti inflammatories would make no difference if its lymphodema; inflammation is a totally different process

Take care

Julia xx (a nurse!)

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Re: Is this lymphedema?

would anti-inflammatories reduce the swelling?

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Re: Is this lymphedema?

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elinda45
Member

Re: Is this lymphedema?

It could be or it might be something else. The fact your arm has been a bit fuller for the past few months suggests it could be.

I don't claim to be any expert on this but have been recently diagnosed with lymphodema. To be on the safe side, stop putting ice on your hand. With lymphodema you need to avoid extremes of temperature. Ice could make it worse as it will increase blood flow after the ice is taken off. Brushing towards the trunk probably won't work as you need to do self lymph drainage you need to start at the head and get working lymph glands stimulated - also you need to be shown properly by a lymphodema nurse. Again I wouldn't tie your arm to the bed either as you may cause some restriction.

How about doing the arm exercises for lymphodema that they show on The Haven video clip:
http://www.thehaven.org.uk/how-we-can-help-you/lymphoedema

Apart from that keep it well moisturised and get to see someone with specialist knowledge as soon as you get home.

If it stays swollen and shown signs of redness or inflammation, pain or you get a temp then I'd get some medical attention.

Hope it resolves. Even if goes down I would still get it checked when you get home.
take care, elinda x

Guest user
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Is this lymphedema?

I am nearly 4 yrs post dx and have been feeling so positive about my future and leaving cancer behind. i have noticed for some months now that my right forearm is slightly fuller than the other and that the elbow bone is slightly less distinguished. i am fit and active and thought LE might have passed me by as I did not have rads and only have 9 nodes removed. However, following a shopping trip last week, my hand swelled up and hasnt gone down yet. There is no pain,never has been, but being in the hand it causes some discomfort as the bones are so small there. It seems to help putting ice on it, but then goes back swollen once the hand has warmed up again. I have even tried sleeping with my arm tied to the bedpost, but not helped. I have gently brushed the skin towards my trunk and rested loads. I am seeing a slight improvement in my hand and there is no feeling of tightness.
I am in spain at the mo so not that easy to pop along to the hospital in romford. Could this be something else? Could it go away on its own?
Thank you in advance x