Lymphedema Laser Treatment - Sara's Experience
This is Sara's experience with laser treatment for lymphedema. I want to express my deepest appreciation for her allowing us to post this and her willingness to share her experience. It is one of the best on laser treatments I have seen.
For information on the laser process itself, please refer to our page:
Lymphedema Laser Treatment
Jan. 6, 2012
Breast cancer and lymphedema. Have you exchanged a death sentence for a life sentence?
In 1993, following the discovery of a lump, I had a right mastectomy in 1993. The treatment I received was prompt, efficient and compassionate. In fact between finding the lump and having the operation, only ten days elapsed. Eight lymph nodes were taken and all were clear. I was given a mysterious instruction to ‘look after my arm’ – but that was it. What ‘looking after’ entailed was never made clear (and why look after it any more than usual anyway? After all, my arm wasn’t the problem). There was plenty of head stuff – counseling - on offer but not for me. What could it do? Take away the cancer and bring back my breast? Bad things happen in life and you get through them - somehow. Three years later I had a successful tram flap breast reconstruction. A year after that procedure, after an MRI scan, lymphoedema was diagnosed in my right arm. (I have no way of knowing whether I would have developed lymphoedema had I not had the second operation.). Witness the contrast. Issued with a single sleeve and a photocopy of some ancient exercises, I was assured my arm ‘wasn’t too bad’.
Ironical isn’t it, that when you have a condition that is a direct result of the treatment you’ve received, no-one wants to know. I’d met and talked to plenty of people either with breast cancer or involved in the breast cancer ‘industry’ but I didn’t know a soul either with lymphoedema or treating it. A lonely and depressing experience.
Eighteen months later, after the original had practically fallen to bits, I discovered that I was entitled to two sleeves every six months. I’d followed the limited advice I had available and discovered I’d managed to reduce the size of arm a little. It was still pretty Popeye-ish, though.
By chance I came across MLD in a magazine and subsequently tracked down the Karen Cooper, who practises the Vodder method about half a mile away from where I live. She had plenty of wide ranging and useful information and through her massage and a course of bandaging my arm reduced a little more and long lost contours reappeared. She also lent me some copies of Lymphline publiushed by the National Lymphedema Network, I soon became a member.
What next? The improvement in my arm brought about by Karen’s treatment was being maintained, but I wanted more than that. In particular, I wanted rid of that hated mud coloured boa constrictor of a sleeve.
Three years ago and connected to the Internet I went looking for information on lymphoedema. There is plenty out there! Searching using both the British and American spellings for the ‘l’ word threw up lots of little gems. Australian websites are particularly comprehensive and informative.
It was whilst looking on the Australian Lymphoedema Association website that I discovered a reference to Low Level Laser Therapy as a treatment for lymphoedema. I gathered as much relevant information as I could and, also through the internet, contacted Carol Habrovitsky who lives in Glasgow. Carol was ahead of me. She’d suffered with secondary lymphoedema in one arm for some time and had already decided to make a trip to Adelaide in South Australia at the end of 2001. She had an appointment booked at the Flinders Medical Centre with Professor Neil Piller who is one of the foremost clinical research scientists in the field of lymphoedema.. If Professor Piller thought it was appropriate, LLLT (low level laser) would follow.
Speaking to Carol a few days after she returned to Scotland, I discovered that she was thrilled with the difference the laser treatment had made to her arm…. I decided to start making my own plans to journey to Australia….
It was arranged that I could be seen by Prof Piller at the Flinders Medical Centre at the beginning of July, some six months hence. Prof Piller does all of the lymphoedema assessment work voluntarily over and above his normal load and so there is no charge for the assessments or his time, but the medical centre does welcome donations towards the maintenance of the clinic and lymphoedema research.
After providing details of my condition by e-mail (normally a referral from a GP or consultant is required), I was informed that a course of two weeks treatment at the ‘Lymphoedema and Laser Therapy Clinic’ was anticipated and of the costs involved. Interestingly the most expensive part of the trip (by some considerable margin) would be getting there, followed by the accommodation.. The treatment came last. The Adelaide Tourist authorities assisted me with finding somewhere suitable to stay that was within my budget.
The months passed….
I arrived in Adelaide three days before my consultation with Prof Piller and all of them were needed to recover from the flight and get my bearings. Adelaide is a big city but public transport is cheap and reliable.
Lymphoedema assessment and some treatment is carried out in Ward 4A –the Lymphoedema ward. It contains a number of non-invasive instruments (paid for by fund raising and donations) for measuring the nature and extent of lymphoedema in a patient. In this respect a range of objective measures are used including tonometry to measure fibre buildup in the lymphatic territories, bio-impedance to measure fluids in the limbs and perometry to measure limb size and total volumes very accurately. Asking about how the limb felt was also an important aspect of the assessment so as to try to build up a comprehensive picture of the problem so treatment could be better targeted.
After assessment by these methods and consultation with Prof Piller, I was deemed suitable for treatment with the laser, starting the following day. The treatment had been pre-booked with the Lymphoedema and Laser Therapy Clinic by the Medical Centre prior to my arrival with each session expected to last approximately two hours; an hour for the laser therapy followed by an hour’s massage. (For those coming from abroad and other parts of Australia for treatment, the clinic makes every effort to provide appointments at the beginning or the end of the working day. This gives patients the opportunity to enjoy Adelaide and the surrounding areas, such as the Barossa Valley and Murray River).
I duly presented myself the following morning and physiotherapist Ann Thelander began the laser treatment . It is totally painless. The laser beam swept backwards or forwards (or up or down – it makes no difference) over the affected and adjacent areas of my body, starting with the scar tissue on the reconstruction site and moving along my arm to my wrist. The armpit and shoulder blade were also targeted – each site receiving about 10 mins of laser activity. As I’ve stated, the treatment is painless but not without sensation. I experienced a gentle tingling sensation, considerably milder than pins and needles and not unpleasant. Ann explained that this was normal for limbs with lymphoedema and that unaffected parts of the body do not feel this tingling. She went on to say that it was a sign that the lymphatic system had been stimulated and that fluid was starting to move. Lying on the treatment table resplendent in protective glasses and listening to music, the hour was soon passed.
Robyn Heddle, also a physiotherapist at the clinic, follows up the laser treatment with massage. I’ve only experienced the Vodder method of MLD and it had to be said that Robyn’s method is nothing like it. It is very robust - devised to complement the effect of the laser. The combined aim of the two treatments is, to quote Robyn, ‘to give the lymphatic system a good kick’. Robyn teaches a version of this massage which can be carried out by the patient on their own (or with the help of a carer, spouse or partner) when their course of treatment at the clinic is finished. The final part of the massage concentrated on breaking down the fibrosis tissue on my forearm. ‘Try managing without your sleeve’ she said at the end. After only one session? ‘Yes, just see how you get on’. Well, I did and it felt marvellous with just a little tiredness at the end of the day. It transpired later that Robyn and Ann, with their long experience of treating. lymphoedema patients have come across several instances of muscle wastage from excessive sleeve wearing. They encourage sufferers to manage without one whenever they feel comfortable about doing so.
In total, I had nine laser treatments and nine massage sessions. Robyn measures the affected limb or limbs every day prior to treatment, but after just one session my arm felt and looked different and continued to do so. I went about sleeveless for most of the rest of my stay in Adelaide. I noticed other healing effects of the laser, too. My bright red raised reconstruction scar flattened and faded to white. Some sensation developed in my reconstructed breast and a little feeling to my armpit. My shoulder blade, totally numb since the mastectomy in 1993 has, in my estimation, 85% of the feeling back. At my last treatment session Robyn measured my arm and told me that for all intents and purposes, I had a ‘matched pair’.
On the long flight home from Adelaide, wearing the sleeve was a must and I think I must have discarded it too quickly after returning home as my arm took a long time to settle. Am I free of the hated sleeve now? Well….I am a fairly active person and this has determined how much dependency I still have upon it. Were I a lady of leisure (as in Australia), I would have very little need of it again. As things stand at the moment I do wear it to work (I am a part time technical author). However, I think this is partly psychological to stop me worrying about my arm when I am trying to concentrate on my job and I find that, depending on how I feel, I may very well remove it during the day. On a day to day basis, I no longer have to put it on immediately on waking and keep it there until I go to bed; I have a choice! But I am also very careful to listen to my arm and do whatever it tells me it needs. I can go out for the evening wearing anything I like for two reasons. One is that the sleeve can be left behind and the other is that my arm looks perfectly normal. It is not an exact match with the other one (but it is very close indeed), however it does look exactly like a normal arm. This is an arm that goes places. In fact, I have just returned from a week’s holiday in the Canary Islands and said arm performed very well assisted by a regime of minimal sleeve wearing, high factor suncream and common sense. Heat is definitely much less of an irritant than it was before.
It is now some months since I returned from Australia. I do the massage every day and can always feel it working, which is not something I’ve come across with other types of self massage I’ve tried. My arm looks as good as the day I left the clinic. Ann and Robyn recommend that their patients return, ideally, for a single laser and massage session every three months or so as part of the ongoing care of their limb. Unfortunately, a return trip to South Australia is out of the question so soon and there is so far no sign of any laser therapy for lymphoedema in the UK. With this in mind, Ann and Robyn suggested Karen continue to treat me using Vodder techniques every three months or so. Prof Piller also recommends swimming for lymphoedema sufferers because of the combined effects of compression , cooling, and exercise and I have taken this up in earnest since returning to the UK. About three early morning swims a week, of about 15-20 mins duration are having beneficial results.
As we all know only too well current treatments, as yet, offer no cure for lymphoedema. They concentrate on controlling the condition and hopefully, reducing the swelling, both of which require the whole hearted and permanent co-operation and participation of the affected party. Laser therapy is no miracle either, but it does seem to have some unique effects on the lymphatic system (some of which can be independent of patient compliance):
Firstly, it acts as a stimulant on the lymphatic system as a whole; not just the area subjected to the laser.
Secondly, with the penetration of tissue by the laser beam to a depth of around 3 cm, healing and regrowth of damaged lymph vessels often occurs.
Thirdly, the laser softens and breaks down fibrotic tissue, making the
subsequent massage much more effective. (Much more cost effective than
traditional bandaging methods- and a lot more comfortable too).
Maintaining the massage routine improves and prolongs the non-permanent effects of the laser. The traditional standbys of good skin care (particularly in the heat), a sensible exercise regime and judicious sleeve wearing (air travel, housework, shopping) all still have their part to play. A much improved limb gave me renewed enthusiasm for the more tedious aspects of lymphoedema management after my trip to Australia – I desperately want to keep my arm looking normal.
If you’ve read all this you’ll be asking yourself why there is no laser therapy available for lymphoedema, on the NHS, in the UK. Well, a free-standing laser machine, such as Ann Thelander uses, costs around £10,000 – 12,000. Not such a vast sum of money; a decent new car would cost about the same. A low level laser can also be used to treat other complaints such as leg ulcers, tennis elbow etc. Well, what’s the problem then? Buying a laser to treat lymphoedema means admitting that the problem actually exists. (How many of us have been told ‘it’s not that bad’? ‘Just get on with it’, etc, etc) – and therefore making funds available to deal with it. Those of us with secondary lymphoedema are growing in number. We are a direct result of improved survival rates for cancer – years ago many of us would have died long before we developed lymphoedema!
Another part of the answer is that LLLT is neither a medicine nor a new
technique. Hence there is no money to tempt drugs companies and no
waiting lists from it. The benefit goes mainly to the patient, although
course anything that reduces the number and frequency of hospital
lymphoedema sufferers ought to have been taken up enthusiastically by
Lasers have been used in Eastern Europe for some years and they are also spreading to much of the Far East, but there is little activity outside these areas. Ann Thelander and Robyn Heddle have been treating patients with both primary and secondary lymphoedema since the late 1980s. Both of them remain mystified as to why, well over 10 years later, much of the rest of the world lags so far behind. I found another part of the answer in my local NHS physiotherapy department. They have a low level laser there, but ‘they never use it much’. There was no system and no funding in place for anyone to try and treat my arm with it (so next stop Adelaide). Lasers have been growing in number in Australia, though. Lymphoedema enjoys a much higher profile than it does here. This is partly due to the heat, which exacerbates the condition, but also due to spiders. The bite of a spider found in Australia (but thought to have originated in South Africa) can also cause lymphoedema. The Australians are also blessed (if that is the right word) with having a high profile politician with lymphoedema. LLLT as a treatment for lymphoedema has even featured in a television programme. Consequently public awareness is slowly but surely being raised. Even so, in order to obtain a laser some patient groups simply have to kick up a tremendous fuss until something is done. Others resort to fundraising. Ann did tell me of one woman who, in desperation, bought her own and then leased it back to her physiotherapist. (Many Australian physiotherapists are self-employed- a combined state health service and private insurance system means that they receive referrals from state hospitals and GPs as well patients who have just walked in off the street).
How to reduce the incidence of secondary lymphoedema? Prof Piller and his team feel there is a real need for education and not just of those at risk of developing the condition. They want to see surgeons given the means and encouragement to investigate the structure of a patient’s lymphatic system before lymph nodes are removed, so that damage to the remaining vessels and tissues is kept to an absolute minimum. This would, they hope, reduce the incidence and severity of secondary lymphoedema. These investigations would take the form of a lymphoscintograph for every patient undergoing surgery involving lymph node removal.
Prof Piller, Ann Thelander and Robyn Heddle often travel abroad to speak about LLLT and lymphoedema.. Sadly, so far, they have not been invited to Britain, but hopefully that will change soon.
Index of articles for Lymphedema Treatment :
Complex Decongestive Therapy
Flexitouch Device - Initial Observations
Flexitouch Device for Arm Lymphedema
Kinesio Taping (R)
Light Beam Generator Therapy
Lymphedema Treatment Programs Canada
Lymphedema Treatments are Poorly Utilized
Short Stretch Bandages
Why Compression Pumps cause Complications with Lymphedema
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