Tubigrip for Lymphodema, any experience or ideas

[nae sporran]

Not quite related to dementia, but it never comes alone. OH has been initially told she needs some kind of support stocking for lymphedema, but despite all the measurements it just would not fit. OF course, her dementia makes her more sensitive anyway. So, on the recommendation of her chiropodist who worked in nursing we asked for Tubigrip. It seems to work and causes minimal pain when I put it on. Now her daughter is off on a mad rant about how they can lead to blood clots and that upset me. Funnily enough, OH was actually calming me down so maybe we are going through a quitter spell with the dementia. Small mercies.

Anyway, if anyone has any experience of these things I would appreciate a little input. Thanks.

 

[nitram]

"Now her daughter is off on a mad rant about how they can lead to blood clots and that upset me."

Surgical stockings and flight socks are used to prevent blood clots.

Ask the GP if (s)he thinks that Tubigrip is suitable.

 

[nae sporran]

"Now her daughter is off on a mad rant about how they can lead to blood clots and that upset me."

Surgical stockings and flight socks are used to prevent blood clots.

Ask the GP if (s)he thinks that Tubigrip is suitable.

Have booked a call back from GP, but that takes nearly 2 weeks. It's just one of those epic hassles. Thanks for the feedback, Nitram.

 

[Beetroot]

I believe kinesio taping can be used for lymphodema, but don't know how effective it is. You'd need to find a properly trained practitioner - some physiotherapists are.

 

[sleepless]

Have booked a call back from GP, but that takes nearly 2 weeks. It's just one of those epic hassles. Thanks for the feedback, Nitram.

Two weeks for a GP to ring you back!!! That's disgraceful.
We always get a call back the same day (duty doctor, not necessarily the same one we usually see, but that's never been an issue.)
Can you ring the district nurse service for advice perhaps?

 

[John4Sue]

Sue had major strokes, so I would have thought that the team of doctors she has been through would know their stuff! While she was undergoing re education (physio rehab) she was still suffering with blood clots at back of brain so on anticoagulants, the team recommended that her weak side leg be given support to stop ankle swelling and "aid" circulation. The support stockings are a problem to put on an uresponsive leg so tubigrip has proved easier in application but does not give the compression support enough so we went back to the full support stocking for compression!
I have cut a short piece of 125mm plastic drain pipe and put a reducer to 80mm on one end, I pull the stocking on to it so the toe part is inside Sue the puts her foot in to the toe I pull off the reducer and slide the tube up her leg applying the stocking as it goes, then remove the tube. It has made the whole application process easier.
The one thing we were warned about is when the stockings get older they crease more easily and that can lead to uneven pressures and problems! (That might be what your DIL has heard about) I have renewable script for both tubigrip and stockings!
So no Nora Batty wrinkly stockings!!!

Hope that is informative for you!
John & Sue

 

[Loopiloo]

I have had lymphoedema for years, caused by cancer of the lymphatic system (one of many forms of Non-Hodgkin’s Lymphoma). Not everyone has cancer related lymphoedema, there can be a number of different causes.

Although some cancers can in some people cause it such as gynaecological ones, and prostrate in men. A small percentage of women with breast cancer who have lymph nodes removed can develop arm lymphoedema. But as I say various other non-cancer causes.

The medical profession including GPs has a poor understanding of lymphoedema as do many nurses. It took me almost a year to discover what the swelling I had was and that there is treatment to control (but not cure) it.

I found the Lymphoedema Support Network a great help and you might like to check out their website. They can be contacted by phone, email and can provide a number of useful leaflets/booklets and are the main UK source of information and advice on the condition.

The spelling is important online. Lymphoedema with an ‘e’. Americans spell it Lymphodema ( I think also Australia and certain other countries) and this spelling omitting the first 'e' letter, online usually takes you to American websites etc.

Lymphoedema support stockings are specifically for this condition and not all other types of compression stocking are helpful and some not recommended. (Also diuretics) Lymphoedema stockings have different grades and sizes according to the swelling. Mainly supplied by lymphoedema therapists at a lymphoedema clinic, or by such a therapist available at a hospital but mainly the clinics.

Who actually diagnosed your OH with lymphoedema?

Multi-layer bandaging every so many months and if appropriate a specific type of gentle lymph upwards massage are usual treatments. Plus wearing the compression garments. The swelling is caused by a build up of lymph fluid in the lymph vessels and lymph nodes. There is protein in the lymph fluids which can cause the swelling to make the leg hard especially the larger the swelling.

But much better you get important and helpful accurate information from the experts than from me. Just type in 'Lymphoedema Support Network UK’ and you should get them with all the necessary information and also how to contact them. If any problem getting the website let me know and I'll check in my quarterly Newsletter called 'LymphLine' - I don't have it to hand right now.

I can empathise with a two week wait to see a GP - or longer! Once I had obtained the information I needed I had to ask my then GP to refer me to a lymphoedema clinic which she did even although she had no knowledge of the condition, had only ‘heard of it’.

Best wishes and good luck

Loo

 

[nae sporran]

Thanks for all the tips.

It was the Lymphodema clinic who actually diagnosed the problem, Loo. They took all the measurements for the stockings, but it would not fit when we saw the second nurse nearly 2 months later. Sorry you have been messed around by Doctors and nurses.
The chiropodist who was a nurse did warn us about the creasing, John. I did say to OH dau that I was aware and was taking it all into consideration, but she gets hysterical. I have been advised to get new ones every month or so to avoid that problem, does that sound right to you?

I will definitely google the Lymohodema support network and read it in detail when I get a chance.

Thanks again and all the best everyone.

PS Have found that support website and also found a kinesio website, so will look into that one too, Beetroot.

 

[chick1962]

My mum has lymphedema in her arm after having had cancer. She goes twice a week to what is called lymphedema drainage but it's actually some form of Physio for her arm as it swells really badly otherwise .


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[nae sporran]

My mum has lymphedema in her arm after having had cancer. She goes twice a week to what is called lymphedema drainage but it's actually some form of Physio for her arm as it swells really badly otherwise .


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Sorry about your mum, Chick. That must be something like the kinesio which beetroot mentioned and I think there is something about it in the LSN booklet, so will investigate further if you reckon it works. Ta.

 

[chick1962]

Sorry about your mum, Chick. That must be something like the kinesio which beetroot mentioned and I think there is something about it in the LSN booklet, so will investigate further if you reckon it works. Ta.

Don't worry, mum is used to it now and cancer free for 10 years it's just the lymphedema in the arm but she quite enjoys the Physio for it and it's become the norm now. I hope you find somewhere who can help Christl as untreated it can be very uncomfortable . Best wishes to you both


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