Coban bandaging

[Poozle]

hi I’m just wondering what everyone else is using seeing Coban bandages are on a manufacturing dispute… don’t nobthe ins and outs but I’m proper fed up because off the nhs/lymphodema clinic etc knew then why on earth have they left us in a limbo.. coban is the only thing that works for me I’ve tried absolutely everything else … stockings and other bandaging… I’ve been bandaging for over 25 years and now I’m out of stock of Coban and my leg is starting to fill… but no one wants to help and just let me try some other method.. I’m so desperate can anyone help please

[sleeviejeebies]

I'm so sorry to hear that Poozle. I hadn't heard about the dispute, and I've just given a big box full of Coban bandages to my clinic as the bandaging I was offered made my swelling much worse. I could have (and would have) sent them on to you... Mine were dispatched pretty rapidly, so I hope it gets sorted quickly for you.

I'm also wondering whether anyone else has had such a bad experience with bandaging. My arm hadn't been that bad for such a long time. I was very upset as I'd had high hopes ...

[Poozle in reply to sleeviejeebies]

Hi there that is so thoughtful of you sleeviejeebies… I’ve been onto my lymphodema nurse and it doesn’t seem to be ending any soon… its a terrible illness isn’t this lymphodema especially keeping it under control… now il be getting more cellulitis attacks because of no compression.. bless you with your arm and good luck

[sleeviejeebies in reply to Poozle]

Thank you! That's bad news though, if the Coban bandaging is the only thing that's helping. I hope they can find a suitable alternative in the meantime...

[DeadfootMo]

Hello Poozle,

This year around about July / August I was going through hell. I knew I had severe Lymphoedema after years of having mild lymphoedema which was aggravated by Celulitis, but i could not get proper treatment for weeks. By the time I did get offered treatment I was starting in a new teaching job. Typical no work for months, then work comes along and so do a whole range of other problems, not aided by and added needs to seek medical helpp. Indeed, i am lucky to be alive as there were a number of failures from my GP's, To A & E Staff, to Walk In Centre Staff etc. And it has only been through my persistence that I eventually managed to get seen to by a Lymphoedema clinic after having some medications.

My main fears were that without proper treatment I could have developed Sepsis and as a result fo that loose a limb.

If anyone had asked me what my pain threshold was out of 10, it was off the scale around 15. My legs were mishapen and extremely swollen from the painful lymohoedema and also red with the heat from the celulitis. I also struggled to walk and would often scream out in pain. But getting a GP appointment took 3 weeks and even then I had to go to a different surgery miles away from where I live. Bloody disgrace. At another point I rang 111 and they arranged a Walk in Centre apppointment also miles away from where I live, despite one being on my doorstep who refused to see me, as the problem was an ongoing issue, they felt my GP needed to deal with. Blast it. I was going around in circles and as a last resort I went to A & E. in an ambulance. Whilst there from 5 pm till 6 am, stuck in a corridor in a wheelchair, I could not get out of and whilst I was also in severe pain, I was spoken to by a nurse, then another nurse, then a junior doctor and then another nurse who gave me morphine. Thirteen hours and they too, referred me on. As they checked my records and it said I had a skin department agreement in place and I should seek help from them.

I then went to the skin department who referred me back to my GP recommending they send me to a Lympohoedema clinic. Another three weeks passed and an appoitment came. However, il was still in severe pain, I still had severely mishapen legs and they were still red and painful from celulitis that had not cleared at that point. So the Lymphoedema team put me into conservative bandaging with a prescription for antibiotics and painkillers Codeine.

After a week of taking 8 codeine a day and a lazative from day three of this treatment, I started to feel the pain easing off. I was then put into 50% bandaging compression after the completion of a dopler test. This kind of bandaging was very uncomfortable but it did the job of getting the swelling down in both my legs over three to four weeks. At work it looked awful wearing surgical shoes but I had no choice as my shoes were never going to fit. Not even my crocs would fit. Then my employer decided to release me from contract, as I needed to finish work early twice a week to have my bandaging done. etc. Being agency teaching staff also made it easier to get rid of me.

A period of unemployment followed and a change in my treatment to overlapping wraps. Which were fine in the early stages of wearing them, but now a good four months on and sadly my feet have started swelling again, so lymphatic fluid must be seeping through to my feet. I am hoping to get through Christmas and New Year, before any more treatments are offered.

I can't wear compression socks as I have the wrong shaped legs to tolerate them .As in the past they have cut me in three sections, via very sore pink ridges, at the ankles, mid calf and just below my knees. Causing pins and needles and a lack of feeling in my feet. Where as the other treatments I have had, did not cause any of this, but instead just gave me a great deal of discomfort trying to walk in surgical shoes.

I f I knew the name of the bandaging I would say so, but it looked like the same sort of material on the outside that is used to make fabric plasters. Whilst the inside was viscoppaste bandaging followed by a layer of cotton wool, then a stockinette and then the sticky bandaging on the top. It was tight, but it did the job.

i wish you the best of luck in getting the right treatment where you are. But in Newcastle upon Tyne, England, it took weeks to get any.

[Poozle in reply to DeadfootMo]

Hi there I too live in uk Nottinghamshire.. it’s terrible how we are treated… gps aren’t helpful and my lymphodema nurse used to listen but I had an appointment last week and wasn’t interested about my bandaging.. saying I needed compression stocking which I’ve used years ago and do not work for me.. apparently the bandage problem stems from brexit and the costs… not the lack of manufacturing… so I’m buying online at a cost I am struggling with… so any lymphodema officials reading this message can you please help … I do hope you get some help and kindness on your journey of this terrible illness sincerely Jeanette

[Perido in reply to Poozle]

Hi Poozle, have you ever tried custom made flat knit stockings? They were a game changer for me and control my swelling so much better than the ready made round knit type that I was initially prescribed.

[Poozle in reply to Perido]

Hi there I’ve tried everything going now but Coban bandaging we’re the game changer for me… I found with stocking s they fell behind back of my knee and the pain was excruciating.. I’d get measured up and imbetween my leg with shrunk or doubled in size and the stockings garment didn’t work.. glad to hear yours is under control

[DeadfootMo in reply to Poozle]

Hello Poozle, It took a hospital doctor in the Skin Department, to tell me I was not suitable for compression socks or stockings, on grounds that my legs were the wrong shape. A very large calf and a smaller leg part below it was not what he considered a suitable shape for compression. I do have some but they cut me in half, with three extra ridges that become sore at the ankle, at the calf and just below my knee. So no good.

However, I did need urgent help last year and when treatment was given, it started off with conservative bandaging and horrible surgical shoes. It then went from that to compression bandaging, which was a miracle in reducing the amount of swelling at my ankles and calves. This was a game changer. But a short term answer to the problem as it meant going to clinic twice a week. A bit awkward if you are working. And I don't think my employer was supportive of this, so told my agency I was no longer needed.

After four weeks of the bandaging, I was then put in to the wraps, a liner sock with no compression and a wrap on each leg. They feel fine if you can stop them from sliding down. But they do need washing twice a week and drying before you can wear them again. The radiators are costing a fortune, so this year, I will buy a heated airer. Irrespective of this cost, they are good. The wraps are easy to put on and adjust every couple of hours. It also means I can wear normal shoes like Sketchers. My line manager is aware that I wear wraps for lymphoedema.

Now with the freeing cold weather I will have to find a pair of boots with a flexible leg bit that can be worn over the wraps. As my old ones are of no use.

Good luck in getting your bandaging sorted.

Maureen

[Poozle in reply to DeadfootMo]

Thankyou Maureen for messaging me I had an appointment two week ago and they persuaded me to try a full leg stocking and then use a wrap to alternate the pressure.. I struggle getting it on it takes ages and frustration but to keep my 30 year control I have to try but personally Coban bandaging is the best I’ve ever had for control.. no slipping of bandage it stays put.. I wish like everyone else there was a cure for us .. please take care .. Jeanette

[DeadfootMo in reply to Poozle]

Hello Jeanette,

I must admit I find wearing a liner sock and the wrap is far less frustrating then getting compression socks or stockings on.

As you get older, you are less able to bend your back repeatedly so reaching to get a compression sock or stocking on is not only frustrating but exhausting too. No good if anyone is an asthmatic or has copd.

For me the liner sock and the wrap is a reasonable alternative. But they do need adjusting during the day. They are also a bit of a faff to get dry after washing them. You can't spin them as they might shrink, they should be dried flat, but I have no means to do that, so I dry them on the radiator when I am in. I keep moving them about, so they get just enough heat to dry without getting too hot and shrinking.

They are not a 100% improvement, but I am happy with 90%. I say this because some lymphatic fluid is still getting through to my left foot and ankle, but nowhere near what it was last year around July, when my feet looked like they belonged to a cartoon character such as big foot.

All the best in keeping your 30 year control of your lymphoedema.

Maureen

[Poozle in reply to DeadfootMo]

Hi Maureen thankyou for your kind words we do what we can to help ourselves don’t we.. I’m asthmatic too and now I have stage 3 kidney disease… I can’t help wondering if all these years of compression have caused this.. it’s my right leg and my it’s my right kidney which also as a fatty tumour.. which they assure me is nothing to worry about..well I do hope some sort of cure comes along I’ve been waiting for liposuction but that must be 10 year ago .. bye for now kind regards Jeanette c