FG-MLD - A patient perspective.

Since the end of July I have been using the technique of Fluoroscopy Guided Manual Lymphatic Drainage (FG-MLD) in practice.  I wrote a post about it when I had finished the training.  At that time, I hadn't used it on real people with real lymphoedema.  Now, after seeing the amazing results I get with it I really believe it is the BEST method of MLD available.  The old technique worked well, so I am not taking away from the traditional forms of MLD, but having used FG-MLD clinically, I really cannot go back to the old way. My clients are feeling and seeing the difference too and recently I asked one of them if they would write me a wee testimonial.  So here it is, completely unabridged and unedited.

I got swelling in my leg 12 years ago, fairly soon after I had extensive surgery to treat cancer.  I had glands taken from my groin and my leg blew up within a few months of the surgery.  Since that time I have had some treatment for my lymphoedema.  I’ve attended a number of MLD therapists and had the bandaging done – they all told me they had got a good result, but I really didn’t think so.  My leg was massive, I’d say at least twice as big as my good one, and even after treatment, it was still huge.  I wear a stocking everyday, my leg was heavy and I felt it was getting worse, so in August I rung Joanne Brennan on the recommendation of a friend who had been raving about how good she was.  I am a complete sceptic, I really didn’t think that anything could be done for me that hadn’t already been tried.  I was probably just going to have to put up with this leg for the rest of my life.
I met Joanne and she assessed me – asked me all the same questions I had answered a million times before, and I thought to myself here we go again.  But then she explained that the technique of MLD she used was brand new.  She explained the science behind it and I thought to myself that really makes a lot of sense, I just hope it works for me.  Well, I have to say that I think it is an amazing technique.  It feels a lot stronger than the treatments I've had before, but that makes it feel like it’s actually working.  I would describe the other treatments I’ve had more like a tickle in comparison.  At the end of the first session I could see a thinner ankle and my leg felt lighter.  After 5 sessions my leg feels and looks brilliant.  It still swells as the day goes on, but when I wake up in the morning and I compare it to the other side there’s very little difference.  I haven’t seen my leg looking as good as it does now since before the surgery.  I can walk much further without getting tired, my energy is increased and I am sleeping much better.  I’ve told Joanne she has magic hands and I would be extremely happy to recommend her treatment to anyone else who suffers with lymphoedema like I do. 

I have been told that I have 'magic hands', I'm performing miracles and even sorcery!! But it is none of those, it is just the use of a brilliant technique which is based on the knowledge that we now have of how the lymphatic system works thanks to the work of Professor Jean-Paul Belgrado and his team.  

FG-MLD....challenging and changing what we know about lymphoedema!

I've just spent the weekend in Cork doing some training with Jane Wigg of The Lymphoedema Training Academy, learning all about the new Fluoroscopy Guided Manual Lymphatic Drainage (FG-MLD) technique. I first did my MLD training with Jane in 2009 and ever since have been using it to great effect with clients who present with lymphoedema and chronic swelling. There is no doubt in my mind that MLD works – we know that, we see limbs shrink in volume, we feel fibrosis soften and we hear what difference that is making to patients. There are different schools of MLD, all using slightly different techniques but with broadly similar treatment aims – to re-educate the lymphatic system to take fluid away from where it is collecting to an area where it can be drained effectively. A problem that we have though in the field of MLD is that up until very recently, we didn't know for sure exactly how it works and the 'it just does' view has little value in the inquisitive and evidence based medical world. There is very little published research evidence available to prove that MLD works. We can set our hypotheses but actually testing them at the most vigorous level is difficult. So my mind has been well and truly blown over the last few days when I have learnt about some of the most recent work being done in lymphology to strengthen the evidence base and to finally answer with conviction the 'how it works' question. Professor Jean Paul Belgrado's work using an infrared camera to view the lymphatic system in living people is further building on Professor Leduc's anatomical work on cadavers from the 1970's. The evidence is compelling. Now we can see lymphatic flow in action in real life, we can see the impact that a compromised lymphatic system is having on that flow and we can see exactly how our hand placements, stroke movements and pressures applied can be adapted to maximise the effectiveness of the MLD technique, and that is what Jane Wigg, Professor Belgrado and his team have done with the creation of FG-MLD. I actually think that this new knowledge will have a massive impact on how we manage lymphoedema now and in the future and in my mind it is a significant medical breakthrough that will have life-changing consequences. Think about how Watson and Crick impacted on our knowledge of genetics or Fleming contributed to fighting infection – I think FG-MLD is the double helix or the penicillin of today!

So, what does this mean to MLD Therapists who are currently effectively treating people with lymphoedema using MLD techniques that have been tried and tested over decades, what does FG-MLD offer us? Well, it means we can have a fuller more informed understanding of what we are doing and why, and have the conviction to be able to say 'This works and we have the evidence to prove it'. It means that we can achieve more, we can have even better outcomes we can be even more effective at moving fluid and softening fibrosis. For patients with lymphoedema it means we can provide you with a researched and evidenced based technique which will reduce your swelling and it will improve your quality of life.

As a therapist I find this incredibly exciting and as I said 'mind-blowing', although at the same time I find myself really challenged. Challenged to change what I am doing, challenged to think differently, challenged to accept a fundamental change in the approach and underlying assumptions to that which we heretofore held about lymphoedema and MLD, challenged to trust this paradigm shift. How comfortable am I with such a high level of challenge? To answer that I have to bring my focus back to why I do what I do. I am a clinician, I want to achieve the best for my clients, I want to make them better, yes the techniques that I am currently using are doing that, but if I can use something that promises to be even better........I can't erase the images in my mind of the fluorescent lymphatic fluid being pushed out of a limb that are there since I saw the video evidence over the weekend. For me its a no-brainer! It's FG-MLD all the way from now on!

So, I actually can't wait to bring this knowledge to my clients. I can't wait to tell them all the new stuff I've learnt (and tell them to forget some of the stuff that I would have told them previously) and I CAN NOT wait to try out the new technique and see the results for myself . The world is revolving and evolving at a fast pace and similarly we have to evolve in our clinical practice. I for one am delighted to be part of this exciting new world of lymphoedema management!

Lymphoedema........is it OK to get a massage?

I'm often asked about getting a massage by people who have lymphoedema or may be at risk of developing it due to treatment over a lymph node area.  The answer to this is not a simple 'Yes' or 'No'.....more of a 'well, you can and you can't' (typical Irish way of answering a question I know!).  So here's my guide to the things to think about...
Most important  - is the person offering the massage qualified to do so, and what are their qualifications.  If you are paying for a massage (as opposed to a family member, partner or friend providing it) then you do need to check out what training they have done.  Gold standard would be they are trained in the lymphatic system by one of the recognised schools of Manual Lymphatic Drainage (Leduc, Foeldi, Vodder, Casley-Smith and the Lymphoedema Training Academy - this is the one I do my training with!).  Any therapist with this training should have a full appreciation of the lymphatic system and what can cause lymphoedema or make it worse and therefore you should be in safe enough hands getting massage from them (it'll probably very likely be an MLD type treatment anyway - which is the best thing for the lymphatics).
There are however many massage therapists available that do not have the above training, and I think I am right in saying that the majority of therapists who work in Spa's, beauty clinics, hotels and sports facilities etc would fall in to this category. So similarly ask them what training they have done in the lymphatic system.  I would tell them that I either have or am at risk of developing lymphoedema and ask them how that would impact on the massage.  I'd then judge by their response would I go ahead with the massage - so I would be looking for them to explain to me how in this situation massage needs to be gentle and that all deep heavy strokes need to be avoided.  I would also be looking for them to ask me for more information in order for them to make a full assessment of me and then to be able to deliver the most appropriate massage for me.  I would have to be assured that I knew that they knew about lymphoedema - if I feel that then grand, if there was any doubts in my mind I wouldn't go ahead.

Strong deep strokes around the part of the body where the lymph nodes are compromised is not recommended. So if it's your armpit that is affected, avoid deep massage in the associated arm, breast, chest and back area.   Massage in that area should be light and gentle and strokes should always go towards the centre of the trunk.  I would strongly advise against getting a 'cupping' massage - where heated glass cups are placed on the body and as they cool they create suction which apparently 'stimulates circulation and healing', think 'lovebite' - cos that's what you end up with -  a series of big dark bruises wherever the suction was applied.  Physiologically a bruise is a sign that tissue damage has occurred, whether it be from getting a bang off a piece of furniture or from a 'healing treatment'.  If your impaired lymphatic system cannot cope with the demand that the increased circulatory and inflammatory response to this 'therapy' will place on it then you could run into trouble.
After having cancer treatment you may find your skin a little more sensitive than it was before.  You might need to avoid the use of perfumed creams and lotions.  If getting an aromatherapy massage, be sure to tell the therapist that you have had/having treatment and they can select the most appropriate oil for you.
Ask around - word of mouth is often the best way of finding the best people.  There are some very good massage therapists around who I would happily refer any of my clients to and if anyone wants their details then let me know.
There are immense benefits of receiving massage therapy by a trained competent therapist who can work with you tissues to bring about relaxation and release of tension throughout the whole body, and this can be very healing in itself, both physically and psychologically.  It is so important if you have/are at risk of getting lymphoedema to make sure you take all precautions that you need to take.  It is YOUR body, and you have to give permission to someone to place their hands on your body - only do that if you are completely happy they know what they are doing because at the end of the day, if something does go wrong, it is you that has to then deal with it.  You need to do your own risk assessment.  Unfortunately I have seen many clients who have received 'massage' and then end up coming to me because lymphoedema symptoms have been exacerbated. On questioning all these clients have said that they didn't feel totally convinced or comfortable that the therapist knew about lymphoedema, despite the fact that they might have said they did.
In the Autumn I will be running a course aimed specifically at body work in clients that have had breast cancer.  This will be open to any touch therapist (massage, physio etc) who might encounter breast cancer survivors in their work. We will be exploding some of the myths and exploring the many possibilities and benefits available from working on the body tissues through therapeutic touch.  More details will be posted soon, or contact me for more info.

Don't miss YOUR chance to shape the future of cancer services in Ireland!!

I posted on Facebook recently about how the Department of Health here in Ireland have appointed a steering group to work on a National Cancer Strategy for 2016-2025.  The work hasn't yet started - there is a period of public consultation whereby the public (we and us) are able to make comments to the Department of Health and steering group (them) regarding our own views/opinions/experiences of cancer care in the country and how we think things should proceed. Now, this is a really important opportunity for 'us' to impact on what goes into that strategy document, we shouldn't waste this chance.  Having worked on a similar level of national document in the NHS (NICE Improving Outcomes for Brain and Spinal Tumours) in the past, I can tell you that each and every comment that comes in through the public consultation period is read, recorded and acknowledged. So lets imagine that we wanted an improvement in access to specialist cancer rehabilitation services - you know to help people get their life back on track once medical treatment has done its stuff. If only one member of the public mentions this in their feedback form, you could see how it would be easy for 'them' to assume that access to rehab services isn't really an issue, as only one person has brought it up......but if a hundred people mention that they are very concerned about lack of access to specialist cancer rehab, then it would be a little harder for the Steering Group to ignore this!!  I'm not trying to tell you what to include when you give your comments - there are many areas of cancer care that could be improved upon, but naturally as a physio working in this area this is one of my major concerns, along with the nearly non-existent provision for lymphoedema services. And just to put this into a bit of context - The National Cancer Strategy Document that was published in 2006 contains the words 'lymphoedema', 'lymphedema' (American spelling), 'physiotherapy' and 'rehabilitation' a grand total of ZERO times........can you imagine that - a strategy for cancer care that doesn't even contain those words which are so vital to the complete package of care offered to anyone having cancer treatment.
This is now 2015.  We have shed loads of research which support physiotherapy and rehabilitation as a key aspect of cancer care not to mention the countless models of comprehensive care around the globe where these things are already part and parcel of what is on offer.  Lymphoedema occurs in upto half of all patients who have some form of treatment to their lymph nodes - it is a BIG part of cancer care and it does need to be mentioned.   If 'they' get lots of comments via the public consultation process asking what they are planning to do to make sure that everyone who needs lymphoedema services is able to access them, or everyone that needs physio is able to access it as part of their total cancer management then they will have to address this and come up with a really good reason if these things are not contained in the document.    So please when you see the link is taking you to the DoH website, don't groan and think to yourself 'what's the point'......CLICK the link. It's here again for you (and you do have to click on the blue word 'here' on that page to access the document) and fill out the form.  Collectively our voice can be very LOUD!

Pilates for Breast Cancer Recovery

I came across this article recently.  Pilates is a great way of exercising for women who are going through or have completed treatment for breast cancer.  Pilates can help to:

• Improve range of movement at the shoulder joint
• Improve the stability of the shoulder complex
• Increase strength and endurance
• Reduce cancer related fatigue
• Improve flexibility 
• Improve posture and body alignment
• Improve balance and coordination
• Improve the circulation
• Stimulate the lymphatic system, which aids drainage of fluid and is important in the prevention of lymphoedema
• Increase bone density, which is important to prevent osteoporosis
• Aid relaxation and reduce anxiety
• Provide an enhanced sense of wellbeing.

My 'Pink Pilates' classes are now available in Kilkenny! 

Lymphoedema - reducing the risk.

For anyone who has had a node clearance as part of their cancer treatment, the risk of developing lymphoedema can be a major cause of concern.  Typically lymph nodes are surgically removed from the armpit or the groin in an attempt to fully remove any cancer cells from the body.   To be extra sure, sometimes radiotherapy is also used, and this can further impact on the already depleted lymphatic system.   The lymphatic system is the body’s own ‘waste disposal’ system.  It transports fluid and molecules from the tissues to the venous circulation whereby waste products can then be eliminated.  Lymphoedema is an abnormal collection of fluid, proteins and fat within the tissues as a result of a dysfunctional lymphatic system.   The lymph nodes are a vital component of this system, and in order to fully understand the importance of reducing the risk of developing lymphoedema we need to have an understanding of how the body would normally utilise the lymphatic system.  Imagine getting a bee sting on the back of your hand.  You would probably feel pain, see redness developing around the area, and then see swelling occur around the site of the sting.  This redness and swelling is an indication that the body has recognised that the protective barrier of the skin has been breached and that its own defence system has been deployed to the area to breakdown and remove any infection or foreign particles that should’nt be there.  The local swelling, which includes the nasty bits of the sting, will then be transported to the lymph nodes in the armpit where they will then be emptied into the central lymphatic system, which will ultimately remove them to the circulatory system where they can be disposed of.  In a person who has had their axillary (armpit) nodes removed, the body will respond in exactly the same way to a bee sting on the hand, but it is  the removal of the local swelling that is now going to be much reduced, resulting in the fluid staying in the hand, which can be the onset of lymphoedema.  It is therefore vitally important for anyone who has had lymph node removal to take precautions every day for the rest of their life to try and minimise the risk of getting lymphoedema in the first place.  Avoiding any kind of breaks to the skin on the affected limb is really important, and a break to the skin that is intentional, for example the introduction of a hypodermic needle for the taking of blood of the giving of drugs can be every bit as dangerous as a bee sting, cut, scratch, or burn.  It is also important to avoid any kind of compressive forces which may produce a tourniquet effect, for example, tight fitting clothing and jewellery or the pressure cuff used when taking blood pressure.   Looking after the affected limb by keeping the skin well moisturised and exercising regularly are hugely beneficial.  It is also important to be vigilant of any changes in the limb, including changes in shape and volume, feelings of tightness or heaviness, pain and reduced range of movement and discuss these with a lymphoedema practitioner at the earliest opportunity.  Lymphoedema can be an extremely debilitating condition, but if it is recognised and treated in its very early stages, it will be a lot easier to manage it in the long term.