When I showed up at the physiotherapists to have my legs bandaged, I did not know what to expect at all. I did not even understand what was happening to my legs at the time and even less the treatment of it.
When I came home with my legs fully bandaged all the way from my toes to my hip and I barely was capable of walking, my body fell to the floor like it broke completely on the inside – and I cried for hours. I had really tried moving forward from the cancer and everything that followed with it, but that just did not seem to be possible. And being bandaged like this was going to be visible to every person I met and I would not be able to cover up my health problems any longer. That was a hard blow for me.
But when I first saw the results of the bandaging, the whole thing with being a bit disabled for all those week during treatment did not seem that important. It would be a lie to say that being bandaged is not uncomfortable, but when it is over, the sight of your almost normal sized legs takes focus.
Below I have written about my experiences with bandaging. I expect that there can be differences between individual treatments, especially in the different countries. But I would also expect the overall response to and effect of the treatment is practically the same from patient to patient. I therefore hope that the information below can be useful in some aspect.
- What, when and how long
- What to expect when being bandaged
- I’m done being bandaged – what now?
- Bandaging at home
What, when and how long
As I have understood bandaging is the usual treatment when a patient is being diagnosed with lymphedema.
What is important to understand is that bandaging in no way can cure lymphedema. The purpose of the treatment is to make your lymphedema-damaged limb as thin as possible, before you go on to wearing compression stockings that will keep the swelling abreast in everyday life.
In all the bandaging places I know of there are two steps of the bandaging treatment: i) manual lymph drainage or compression pump and ii) bandaging.
The purpose of the manual lymph drainage and lying in the compression pump is to increase the circulation of lymph fluid in your (remaining) lymph vessels before being tightly bandaged. Manual lymph drainage is similar to self drainage which you can read more about here. You can read more about the compression pump here.
The second step is the bandaging itself. To understand the bandaging you need to understand the essence of lymphedema. Lymphedema is a matter of your lymphatic system no longer working (as well) as it normally would; the lymph vessels are not (in the same extent) transporting the lymph fluid to the nodes which results in a accumulation of fluid in the tissue. The purpose of the bandaging is to put a pressure on the lymphedema damaged limb and in that way help the fluid being transported away from the limb.
I have been bandaged in several different ways. The most traditional one is where you are tugged in in some kind of foam and then afterwards a compression band is rolled around the foam. It is important that the compression band is used correctly no matter the bandaging way, because the bandages needs to increase the flow in the right direction. The professionals executing the bandaging of course know exactly how to use the compression band effectively on the individual lymphedema.
Bandaging is usually relevant at three stages in a case of lymphedema:
- When you first have been diagnosed with lymphedema to get the swelling down as much as possible before having taken measures for compression stockings.
- When the lymphedema has worsened severely and the bandaging might get the swelling down.
- When you suffer from continuing erysipelas infection and the bandaging might better the lymphatic flow and thereby decrease the number on infections.
In my case I had run around with swollen legs for a couple of months when I first got diagnosed with lymphedema. That meant that my edema was much worse than it would have been if I had gotten the proper treatment and aid when the lymphedema started showing. But then I was bandaged for a couple of months and the measurements on my legs improved dramatically. When my legs could not get any thinner, the physiotherapist measured up for compression stockings that I was going to wear on a daily basis.
When you wear compression stockings you usually have to replace the stockings once a year, because the compression effect in the stockings lessens. And when you’re are getting new stockings, you get your legs measured to make sure that the new stockings will fit your legs – and your lymphedema – in the best possible way. A few years back I was being measured for new stockings and it was discovered that my lymphedema has worsened a lot since the foregoing year’s measurement. In Denmark they have this rule of thumb that if your measurements have worsened more than 3 cm one or several places on the limb with lymphedema, you will have to be bandaged to try and get the swelling down before getting new stockings.
Bandaging can also be relevant when you – like in my case – have had a lot of erysipelas infections and they keep coming back. Then the bandaging might help increase the lymphatic flow and it might decrease your number of infections. In my case the bandaging did not have any effect on the massive number of recurrent infections, but my case seems to be quite out of the ordinary so I imagine that bandaging might be able to help other patients struggling with recurrent erysipelas infections.
The bandaging treatment usually lasts from 1 to 5-6 weeks, depending on the individual case. During those weeks you will have to go to the hospital (or the physiotherapist where you are getting bandaged) and have the bandages changes 2-5 times a week. The bandaged are changed regularly to make sure that there is a constant pressure on your legs. If the bandages are loose they will not have any effect on your lymphedema.
What to expect when being bandaged
Every experience with bandaging is probably different. Down below I have listed some of the things I experienced when being bandaged – and which I would have appreciated being prepared for to some extent.
Even though the list down low can seem kind of devastating, don’t worry, it is not that bad. Bandaging is not as big a challenge if you accept it for what it is and you accept that you will be functioning a bit slower than usual. I do realize it can all seem a bit awful when reading the list, but that is only because all the challenging things are listed in line.
Please have in mind that I have had bandages on both my legs, all the way from my toes to my hip, so my experiences with bandaging will vary from a person who has bandages on his or her arms or a person who only has a smaller part of the body bandaged.
- It will get itchy. You limbs underneath the bandages will go without proper cleaning (and shaving) for several weeks. And the bandages itself can cause a lot of itching already the first day of wearing them. Try not to itch underneath the bandages cause that can make them loose.
- It can be difficult to sleep properly. The bandages are a bit big and not exactly comfortable. It is like being mummified. And your legs – or arms or other limb – is kind of being held captive in these tight garments, so I do not imagine it feeling natural for anyone to wear these things.
- You can get very tired and have less energy in the weeks you are bandaged. This because of the possible problems sleeping and because it is both physically and mentally hard to run around with these huge bandages. When I am going to get bandages, I deliberate plan my days with this in the back of my head because I simply did not have the energy to run around doing all sort of things.
- It will be harder to move around. The bandages of course limits you moving abilities. I could still walk around and still go to work, but it was a more troubled than normally. One of my physiotherapists told me that one of her other patients still managed to run marathons wearing the bandages, and bravour, I find that extremely impressive. It is hard to move around doing all sorts of exercise when you are in bandages, but some people still manage to hold on to many of their usual habits.
- It can hurt a bit when you use your muscles. Some times when I went for longer walks or I tried biking, I could distinctly feel my leg muscles hurting. But that it simply because the bandages are so tight and I was told that it is actually good to use my muscles while in bandages because it can increase the lymphatic flow.
- The obvious one: You will have to leave work or studies to get the bandages changed: The first time I had bandages on, I was studying and I did not plan with the bandaging in mind. I missed a lot of classes every week those weeks because I had to go to the hospital to get my bandages changed. I also missed classes because I was too tired or in pain after getting the new bandages on. I would therefore advise others to plan with this in mind; if you are told you have to be bandaged, remember to schedule the necessary time for the treatment itself and unforeseen things in relation to the treatment. If you are studying, try study ahead before going in to the treatment, so you will not feel as frustrated if you get behind on studying while you are being bandaged.
- It can hurt and it can hurt a lot (but that can – and should be – fixed): I have tried several times leaving the hospital crying because of pain in my legs or waking up in the middle of the night because it felt like my legs were being strangled. It actually felt like my legs were dying because they could not “breathe” as a result of the bandages being put on too tight. And it can be put on too tight. I once left the hospital barely being able to move my legs and the pain was excruciating; I cried every second walking down to the train. It has only happened very few times for me (because I did not have my regular, very experienced physiotherapist, but a “new-be”). Those few times it has happened I simply told them to re-do the bandaging and they did it immediately. So remember not just to ignore it if it feels truly wrong (and believe me, you will know when it does).
Based on the things above I myself try to plan with the following advices in mind when I go in to a new round of bandaging:
- Expect to have less energy. Do not make a ton of planes – keep the schedule clear when possible. (You can always make plans later if you feel the energy is actually there.)
- If possible, work less. It is hard working or studying full time while being bandaged.
I’m done being bandaged – what now?
I remember the first time I had had my legs bandaged – I had been wearing the bandages for about 4 weeks. I especially remember the moment where I came home and sat down on the bed with the bandages removed from my left leg, because that leg needed less treatment than my right leg. I sat quietly on the bed. Then looked over at the shower. I definitely had to wash my left leg that had be a captive in those bandages for weeks and it could only go to slow.
I turned on the shower and the water gently touched the skin on my leg. I could sense every little square millimetre of my leg being washed clean and I experienced an entirely euphoric feeling in the rest of my body. I soaped in the leg and I enjoyed every single stroke of my hand massaging the leg. Afterwards I shaved my leg, dried it and put lotion on it. It was pure heaven. To feel my clean, soft skin again.
My right leg, which was still in bandages, did not even exist in those hours after I came home from the hospital. I just went down under the covers and enjoyed the feeling of being able to glide my left leg around under the covers. My leg was free.
Being bandaged is hard, both physically and mentally. The good thing is that you do not have to have that much focus on it while it is happening, but when it is done you suddenly get to appreciate certain things like you have never appreciated them before – for example having clean, shaved legs.
But let’s get down to business.
Bandaging is only a temporary tool to get your lymphedema under control. When you are done with the bandaging, the limb with lymphedema will only be “protected” by compression stockings that naturally cannot put the same amount of pressure on your lymphedema.
I have been very aware of taking care of my lymphedema on a daily basis to try and keep the swelling on a level not far from the one I had after a bandaging treatment. And I do not walk around without my stockings. You can read more about the things I have had good experiences with here.
It is important to take care of your lymphedema on a daily basis. If your lymphedema gets worse in a specific area and the fluid are “bottled up” there for too long, the tissue can get hard. Hard tissue is permanent and so will the swelling be in the area where you have hard tissue.
If you should get hard tissue and it is a problem (either health wise or mentally), there are surgical possibilities. You can read more about plastic surgery when having hard tissue here.
Bandaging at home
It is possible to do bandaging at home with a classic compression band. I bandage my legs in periods where my legs are acting up at lot. You can for example sleep with the compression band on.
My physiotherapist advised me to also wear my stockings underneath the compression band since the band itself might not be strong enough to hold the lymphedema down by itself. But if you combine the compression band with the stockings you will get the effect from the stockings (holding the lymphedema down on a normal lever) plus the effect of the compression band (a pressure increasing the flow that the stockings help maintain).
I would strongly advise that you get an introduction to bandaging yourself at a physiotherapist because it is extremely important that you do it the right way. The compression band must be used in a way that secure most pressure in the end of your limb, for example your feet, and least pressure in the top of the limb. If you do it the opposite way, you risk actually pressuring the fluids in the wrong direction only worsening the lymphedema.
If you do not have the opportunity to go see a physiotherapist, I would advice you to find a video on YouTube explaining how to bandage yourself. Many of the Danish hospitals have put videos on YouTube explaining every step of bandaging at home and I would expect that these kinds of videos can be found in other languages as well.