Life of Lymph

Lymphoedema Articles

Tiny bypass that relieves the misery of swollen limbs

By Diana Pilkington

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Lymphoedema — painful swelling in the limbs — is a common side-effect of treatment for breast cancer, but also blights the lives of thousands of men with conditions such as prostate cancer.

Stuart Elcock, 69, a retired civil servant from Buckinghamshire, underwent a new procedure for tackling it.

THE PATIENT

'In 2011 I found a lump at the top of my right leg, said Stuart Elcock

'In 2011 I found a lump at the top of my right leg, said Stuart Elcock

 

When doctors told me I might develop lymphoedema after surgery for a tumour on my thigh, it was the least of my worries: I just wanted to get rid of the cancer.

I’d been treated for testicular cancer years ago, but had more than three decades of good health after that.

Then, in 2011, I found a lump at the top of my right leg — it was a sarcoma, a rare type of cancer in the connective tissues.

The doctors said it might be due to the radiotherapy I had in the Seventies.

The surgeons managed to get the sarcoma out.

But over the next two months, my right leg swelled until it was about 50  per cent bigger.

I had lymphoedema, where the lymph system — a network of tiny vessels that drains tissue fluid back to the blood — doesn’t function properly.

It was caused when the surgeons removed some of the lymph nodes next to my cancer.

The nodes are like filters, and the surgeons took them out to check if the cancer had spread. But if they are damaged or removed, fluid can build up.

My leg grew very heavy and I lost the feeling from my groin down to my knee. The skin became hard and my knee and ankle swelled.

I struggled to walk short distances and had to stop driving.
And showering was difficult — I couldn’t wash my feet because my knee was swollen, so my wife, Morag, had to do it. She also had to put on my shoes and socks.

'The
 skin has softened and the feeling is back,' said Stuart

'The skin has softened and the feeling is back,' said Stuart

Other problems arose, too — the lymph system helps defend against infection, so you can get skin infections.

I needed antibiotics for two bouts of cellulitis, infection of the tissue below the skin.

I had numerous urinary infections, too.

My GP referred me to a lymphoedema clinic, where I was given a compression stocking, but after a few days of wearing it, the 8in surgery wound in my thigh opened slightly and lymph fluid started leaking.

 

Even with lighter compression, the wound opened and the fluid soaked on to my boxer shorts.

My GP referred me back to the Nuffield Orthopaedic Centre in Oxford, where I’d had my cancer surgery.

Dominic Furniss, a plastic surgeon, suggested I try a procedure he had recently learned in Japan, which would redirect the fluid away from the wound. I quickly agreed.

In April last year, I was put under general anaesthetic for six hours while the surgeons stitched some of my lymph vessels directly to my veins so the fluid could bypass damaged nodes.

Over the following weeks there was a gradual improvement in the swelling in my leg; although it’s only gone down a bit, the increase in mobility is tremendous.

The skin has softened and the feeling is back.

I can walk the half mile from home to the shops with no trouble, and can shower, drive and put shoes and socks on unaided.

The cellulitis, urinary infections and leakage are gone, and the wound has healed nicely.

THE SURGEON

Dominic Furniss is a plastic surgeon at Oxford University Hospitals Trust  and Oxford University. He says:

More than 125,000 people in the UK are affected by lymphoedema.

It’s very common in women who’ve been treated for breast cancer — about 60 per cent of sufferers whose lymph glands are treated will develop it.

But you can get it after many other cancers, too, such as testicular, prostate and melanoma.

There are even reports of lymphoedema in the face after radiotherapy for head and neck cancer.

For someone like Stuart, who was leaking lymph fluid through his open wound, it can be very distressing.

Conventional treatment involves massage, compression and life-long skincare to prevent infections. But this doesn’t address the cause — the blockage to the outflow of lymph fluid.

With this new technique — supermicrosurgery — rather than trying to force the lymphatic fluid past the blockage, we direct the lymph vessels into the veins so the fluid bypasses the obstruction.

The lymphatic vessels and veins we work on are tiny — between 0.2mm and 0.8mm in diameter — so we use a microscope and super-fine instruments.

First, we make about four 1in incisions in the affected limb, and find the lymph vessels and veins just underneath the skin.

We then take some of the lymph vessels and stitch one end into a vein, using nylon stitches about a fifth of the thickness of a human hair.

Studies show the more vessels and veins you join, the more effective it is, so we do between six and ten, depending on time. The operation takes four to six hours.

As we only go up to 2cm deep into the tissue, the only real risk with the operation is a superficial wound infection.

It leaves scars, but they aren’t very noticeable, and there’s no great risk of damage to deep structures such as nerves and tendons.

The real joy about this operation is that it’s minimally invasive, and most patients can have it done under local anaesthetic.

When Stuart came to me, he was struggling with daily tasks and his wife said he wasn’t the man he used to be. But when I saw them again a few months ago, she said: ‘You’ve given me my husband back.’

He had normal shoes on and trousers — I’d only seen him in loose-fitting elasticated ones.

This technique won’t cure very bad lymphoedema, but we can reduce the complications, make the limb feel softer, and reduce the swelling.

And the benefits continue accruing for about four years after the operation.

We can now identify early stages of lymphoedema and even those patients who are at risk of getting it.

For example, if a woman with breast cancer is to have her lymph glands removed from her armpit, we can perform this surgery before the swelling manifests.

So many people survive cancer nowadays that we need to look at the complications of their treatment and improve their quality of life.

Techniques like this can help.

The operation is available on the NHS and costs about £10,000 when carried out privately.

 

 

 

MailOnline - news, sport, celebrity, science and health stories

Liposuction helped shrink my agonising swollen leg: How lipo is relieving a chronic lymph problem affecting thousands

By ANGELA BROOKS

PUBLISHED: 01:17, 21 August 2012 | UPDATED: 01:17, 21 August 2012

'My leg was so big, it was hard to bend it,' said Roisin Gallen

'My leg was so big, it was hard to bend it,' said Roisin Gallen

By the time Roisin Gallen received treatment for chronic lymphoedema, her left leg was twice its normal size. 

The divorced mother of two, normally a size 12, had to wear size 18 trousers nipped in at the waist.

‘It was like having elephantiasis,’ says the 45-year-old who lives near Belfast. 

‘My life was terribly restricted. 

'My leg was so big, it was hard to bend it.

'It was like walking with a large, inflatable pillow strapped round it.’

Roisin’s lymphoedema was set in train by treatment for cervical cancer in 2001.

This included having a hysterectomy, where lymph nodes in her groin were removed to stem the spread of disease, followed by radiotherapy.

Up to 250,000 people in the UK suffer from lymphoedema and key triggers for the devastating and often disfiguring condition are surgery and radiotherapy where lymph nodes are removed or damaged, particularly in breast, prostate and gynaecological cancers. 

Lymphoedema is a swelling in a limb as a result of damage to the lymphatic system, the body’s waste disposal system.

 

The lymphatic system plays an important role in the immune system, removing bacteria and waste from the tissues through a fine network of vessels carrying a fluid known as lymph. 

This travels to the lymph nodes, where it is cleansed.

If the system is compromised — as can happen as a result of both cancer surgery (where the nodes are removed) or radiotherapy (which can create scar tissue that blocks the lymphatic channels) —  unfiltered lymph fluid becomes trapped and forms pools, causing swelling. 

This can begin anywhere from a day to 30 years after surgery — it’s not clear what sets off a delayed response.

Six months after the operation, and for the first time in more than a decade, Roisin's legs are the same size,
 and she's back in size 12 clothes

Six months after the operation, and for the first time in more than a decade, Roisin's legs are the same size, and she's back in size 12 clothes

As well as swelling, this trapped fluid puts patients at high risk of potentially life-threatening infection such as cellulitis, an infection of  the tissues. 

Something as innocuous as a graze can kick this off, as toxins can build up in the body.

Roisin’s GP initially mistook the swelling in her ankle a few weeks after her cancer treatment for simple fluid retention — an  all-too-common occurrence.

Her condition was diagnosed five months later by a physiotherapist and she was given a compression garment to prevent fluid build-up as well as specialist lymphatic drainage massage to ease the fluid out. 

 

This stopped when the physio went on maternity leave.

Like many patients, Roisin was to learn that treatment for the condition can often be patchy.

For the next two years she was on a waiting list for treatment, with her condition worsening. 

She then contracted cellulitis, which fortunately responded to treatment but she was warned to go straight to hospital if it happened again.

By 2009, Roisin’s condition was so bad she was referred to a vascular surgeon, who pronounced her condition ‘too far gone’. 

‘He said there was nothing he could do for me,’ recalls Roisin. 

‘By this time, I was in constant pain and couldn’t bend my leg at the knee.’ 

She could only walk by leaning on her right leg and swinging the left leg forward. 

‘I couldn’t shave my legs in case I got a skin nick and infection — you have to be careful not to get a mosquito bite for that reason. 

'My feeling was that I’d honestly rather lose my leg than stay like that.’

Then, by fluke, she heard about specialist lymphoedema liposuction being carried out by plastic surgeon Alex Munnoch at Ninewells Hospital in Dundee. 

Although the treatment is approved by the National Institute for Health and Clinical Excellence (NICE) for chronic lymphoedema, there are very few surgeons practising it, and getting treatment paid for by local health trusts can prove very difficult.

Roisin underwent the treatment in March this year. 

By then the watery fluid in her leg had become a hard mass — almost, she says, ‘like putty left out to dry’.

An arm or leg with chronic lymphoedema won’t just be puffy with excess fluid, explains Mr Munnoch.

‘It will be puffy from fluid and excess fat because the lymphatic fluid is rich in proteins and stimulating hormones which activate the production of fat.’ 

The surgery involved creating 14 holes in Roisin’s leg using the specialised, extra-fine tubes necessary for lymphoedema liposuction.

The hardened protein and fat was then removed in the same way as with liposuction.

Six months later, and for the first time in more than a decade, Roisin’s legs are the same size and she’s delighted to be back in size 12 clothes.

The drawback of lymphoedema liposuction is that it does not cure the underlying disease, so she will have to wear the very tight compression garment day and night for life to prevent fluid build up in the future.

The surgery involved creating 14 holes in Roisin's leg using the specialised, extra-fine tubes necessary for lymphoedema liposuction

The surgery involved creating 14 holes in Roisin's leg using the specialised, extra-fine tubes necessary for lymphoedema liposuction

‘People ask me whether it bothers me that I have to wear the garment — and it’s tight and hot in the summer,’ she says. 

‘But I would honestly wear six of them at once if I had to rather than go back to how I was before my liposuction.’

 

Until now, the underlying causes of lymphoedema have been regarded as irreversible. 

But now two remarkable pioneering surgical techniques that put a potential cure within sight have just started to become available in Britain. 

In a healthy person, the lymphatic fluid drains into blood vessels after being filtered by the lymph nodes.

New imaging techniques are revolutionising lymph bypass surgery. 

This involves pinpointing healthy lymphatic channels and re-routing them by stitching them into the blood vessels, bypassing blocked lymphatics.

But with some lymph vessels no more than 0.2mm wide, this is technically challenging microsurgery, explains Kelvin Ramsay, a plastic and reconstructive surgeon at the Royal Marsden Hospital, London. 

First, dye is injected into the patient’s hand and it’s then taken up into the lymphatic system. 

Surgeons turn out the lights and use a near-infrared camera, which lights up the microscopic lymphatic channels. 

This shows clearly which channels are blocked so that only clear channels are grafted on to blood vessels.  

There’s also lymph node ‘transfers’.

These aim to kick-start the lymphatic system by harvesting lymph nodes with their own blood supply from elsewhere in the patient’s body and plugging them into the armpits of breast cancer patients who have lymph nodes cleared or damaged by their cancer treatment.  

As soon as the transferred lymph nodes are connected in the armpit, they start releasing substances that encourage the growth of new lymphatic vessels as well as the old pathway to open, says Anne Dancey, a plastic and reconstructive surgeon at the Queen Elizabeth Hospital in Birmingham who has already performed  25 lymph node transfers. 

The hospital is now starting a clinical trial comparing lymph node transfer to standard treatment with specialist massage and compression garments.

As with the lymph bypass, before the transfer, dye is used to flag up the blockages. 

‘My patients have been able to get rid of their compression garment and that is life-changing for them,’ says Ms Dancey.




MailOnline - news, sport, celebrity, science and health stories

The women left with bloated limbs when the body's plumbing goes haywire

By JILL FOSTER
UPDATED: 14:38, 12 July 2011

When sales manager Donna Hughes returned to her hotel room after a conference, she was tired after a long day on her feet and had been drinking afterwards with her colleagues. 

But nothing could have prepared her for the sight of her leg as she got ready for bed. ‘As I was undressing, I looked down and saw that my right leg was almost double the size of my left,’ she says. ‘It wasn’t red or painful — and I hadn’t noticed it while I was wearing my trousers.

‘And although it sounds odd now, I wasn’t too concerned. I thought it was because I’d been on my feet all day, and I went to bed hoping it would have gone in the morning.’ 

 
Donna Hughes suffers from lymphoedema, a condition that leaves her legs swollen because fluid cannot drain away from the tissue

Donna Hughes suffers from lymphoedema, a condition that leaves her legs swollen because fluid cannot drain away from the tissue

But next day, her leg looked exactly the same. ‘I was worried that there had been no change, but because I wasn’t in any pain I got on with my day.’ 

Four years on, Donna’s leg is still swollen. She suffers from lymphoedema, a condition where the lymphatic system — a filter network of tiny vessels which runs alongside the circulation and drains waste products from the blood — isn’t working properly. 

Normally, fluid drains from the lymph channels into the lymph nodes. These nodes act like filter stations that process the waste — the fluid itself goes back through the body into the circulation. 

However, if the lymphatic system is faulty, the fluid it would normally drain away accumulates in the tissue and the area swells up.

The skin becomes like a soggy mattress, because there’s too much fluid in the tissue, explains consultant vascular surgeon Eddie Chaloner, at the BMI Sloane Hospital in Beckenham, Kent: ‘There are two types of lymphoedema. Primary lymphoedema is when there is an abnormality in the development of the lymphatic system.

‘Secondary lymphoedema is when the lymphatic system has been damaged in some way, maybe through infection, radiotherapy or surgery.’ Up to one in four women who have undergone a mastectomy develop the problem.

Patients can have swelling anywhere on the trunk or face, although the majority have it in their legs and sometimes in their arms.

Around 100,000 Britons have lymphoedema, but countless more could be living with it without a diagnosis, according to the Lymphoedema Support Network.

33%

The drop in lympoedema risk among breast cancer patients who take up weightlifting

‘It’s extremely common, particularly in middle-aged women, although we don’t know why,’ says Mr Chaloner. ‘The reason it’s not being picked up is because it’s not a priority for the average doctor because it’s not life-threatening.’ However it can be extremely debilitating and makes the skin vulnerable to infection.

Often, those with lymphoedema find it hard to get an accurate diagnosis ‘simply because their GP has not come across the condition before,’ says Karen Friett, of the Lymphoedema Support Network. Indeed, when Donna saw her GP about her leg the next day, he had no idea why it had swollen.

‘He wanted to rule out anything serious such as cancer, so he referred me to a blood specialist at Worcester Hospital,’ says Donna, 31, who is married and lives in Bromsgrove, Worcestershire.

‘I thought there must be something seriously wrong. At the hospital, I spent a day having blood tests and ultrasound scans to check what  was happening with the blood flow in  my legs.

‘But at the end of it, they still couldn’t tell me what the problem was, although there was a small chance it was a blood clot so I should stop taking the Pill.’ 

Through her private healthcare plan, Donna was then referred to a vascular surgeon in a private clinic in Worcester. 

‘He examined me and looked through my notes and said either something was wrong with the flow of blood in my leg, or it could be lymphoedema. I had another ultrasound scan which showed the blood flow was fine, so that confirmed it was lymphoedema.

‘I’d Googled my symptoms and knew that there was a strong chance that this is what it was — what made it worse was that I’d also read there was nothing they could do to treat it.’ 

 

Leading up to the night at the hotel, Donna says there were signs she was suffering from the condition. ‘I had swollen glands every now and again in my throat and in my arms, and was informed that this is a perfectly normal way that the body fights infections.

‘In recent weeks, I’d had an infection where the glands in my groin had swollen, but no one was able to identify what had caused it,’ she says. ‘I also noticed that some trousers were slightly tighter on one side and although it sounds silly, I thought it was just the trousers that had shrunk.’
Donna had secondary lymphoedema, thought to be caused by the infection in her groin. 

There are currently no drugs or surgery that can treat lymphoedema. However, it can be managed with bandages or compression stockings, which encourage the lymphatic system to drain.

The stockings or bandages don’t squeeze the limb as you might expect, but provide a resistance, helping to improve lymph movement by allowing your calf muscle to squeeze against it, says Kimby Osborne, a chiropodist now working as an adviser on foot health.

She explains: ‘When you flex your foot or put weight on your leg, you get a massaging effect which helps the circulation through the lymphatic system.
‘Most people would rather use stockings than bandages, as it’s more convenient.’ 

But wearing a stocking for life was something that Donna was dreading. ‘When the vascular surgeon confirmed it was lymphoedema, he brought out this  horrendous long stocking. I was so embarrassed. I suddenly felt like I’d aged by 30 years because I’d have to wear it all the time.’

As well as wearing the stocking, Donna must take care not to cut her leg. As Mr Chaloner explains: ‘The most common problem lymphoedema patients encounter is infections, because the skin is much more porous. 

The bacteria that live on your skin can penetrate the skin of lymphoedema patients much more easily and the white blood cells find it harder to fight the infection because of the condition of the skin. 

‘That can cause cellulitis — infection in the deep layers of the skin — which can be quite serious and lead to hospitalisation.’

Meanwhile, Donna’s condition ‘goes up and down’ depending on her activity levels. ‘I’ve had a hectic couple of weeks. I know that there are probably a few more millilitres of fluid in there than if I’d been resting. 

‘Elevating my legs can help,  and alcohol is definitely a no-no. I also do exercises to help. It’s still distressing. I only ever wear  trousers or long skirts now. I’m able to wear high heels, though not very easily.

'Thankfully, the vascular surgeon recommended several brands of stocking to me, and I now wear either stockings made by Activa Healthcare or Medi-Stocking, which have nice lacy tops that I felt are a bit more normal. I still want to feel like I’m 31, not 71.’ 

Information and advice at lymphoedema.org, 020 7351 4480.







MailOnline - news, sport, celebrity, science and health stories

Linda was saved from cancer - but bungling doctors left her suffering for life

By CHARLOTTE DOVEY

Last updated at 10:18 27 November 2007

Still in pain: Linda Parton

When Linda Parton defeated breast cancer - twice - she thought it was the end of her problems. In fact, it was just the beginning.

For, as a result of poor post-operative care, she developed lymphoedema, an incurable and hugely debilitating condition which causes painful swelling.

Lymphoedema is caused by an impaired lymphatic system and affects 100,000 people in the UK, 25,000 of them after breast cancer surgery. The others are largely due to injury to, or infection of, the lymph vessels.

The lymphatic system clears unwanted protein and water from the tissues via the lymph vessels throughout the body. Lymphoedema occurs when the system is faulty in some way: fluid doesn't drain from the tissue, but builds up, causing swelling or oedema.

While not all breast cancer patients develop the condition, their chances of developing it are greater because the lymph nodes are often removed during treatment, potentially damaging the lymphatic system.

The problem can be triggered by something as simple as having your blood pressure taken, which is what happened in Linda's case. Other traumas that can set off the condition include lifting something heavy, a skin infection, a cut or insect bite.

In the early stages, the swelling - which usually affects either the arms or legs (the areas next to the armpit and groin, where glands are found) - may be slight, but over time, and if left untreated, the area may harden.

Cellulitis, a skin infection characterised by pain, redness, swelling and heat, can occur as a result of lymphoedema. If severe, it can be life-threatening.

Although lymphoedema is incurable, with the right post-operative care it is possible to help prevent it occurring in the first place.

Unfortunately, knowledge about the condition among some healthcare professionals is 'fairly poor', says Peter Mortimer, professor of dermatological medicine at St George's Hospital, London, and an expert on the condition.

'This means information on prevention isn't always given to patients.

'This is partly because it's not fatal, which puts it low down on the healthcare agenda.'

In Linda's case, the pain of lymphoedema was compounded by her belief that she could have avoided it.

After being diagnosed with cancer in her left breast in 2000, Linda, a retired chemist's assistant from Tamworth, Staffordshire, had a lumpectomy to remove the cancerous tissue. She also had the lymph nodes removed from her left armpit, so doctors could check the cancer hadn't spread.

In 2002, another lump was found, this time in her right breast, and she not only had the lymph nodes removed from her right armpit but also opted for a double mastectomy.

Having been given the all-clear following the surgery, Linda, 65, was looking forward to the future. However, within eight months, she became one of the 25 per cent of breast cancer survivors who develop lymphoedema.

'After the lumpectomy and removal of my lymph nodes, the nurses stressed how careful you had to be to avoid infection and how important it was to look after yourself to prevent lymphoedema.'

Linda was absolutely fastidious. 'I did gentle arm exercises to keep the fluid moving.

'Beyond that I always wore gloves when out gardening, so as not to scratch myself, I was vigilant when abroad to avoid insect bites, taking antibiotics from my doctor to nip any infection in the bud.'

She went through the whole process again after the double mastectomy. After losing the lymph nodes on both sides, she was fitted with a Hickman line in her chest to allow blood samples to be taken and chemotherapy drugs to be administered without the worry of trauma to her arms and the risk of lymphoedema.

Everything was going well until she contracted an infection and was hospitalised for a week.

'Despite being in the hospital where I'd had surgery, the staff at the assessment unit had no knowledge of lymphoedema. I recall them wanting to take blood from an arm.

'I told them a Hickman line had been fitted because of the danger of developing the condition, but they said there was no one qualified to use it so my arm was the only option.

'When it came to taking my blood pressure, they didn't have a cuff long enough to do a reading from my leg so they used the arm.'

She asked for the left arm to be used, as those nodes had been removed first and had had the most time to recover.

But within weeks Linda noticed her left hand was swelling up and feeling hot. A few days later, when she couldn't get her wedding ring on, her oncologist diagnosed lymphoedema in the hand and, to a lesser extent, the arm.

'It set me right back,' says Linda.

'Having had a double mastectomy, then worked so hard at keeping things in check, to have it ruined by someone's lack of awareness seemed unbelievable.'

The earlier the condition is treated the better, but the lack of dedicated lymphoedema clinics meant Linda had to wait three months for an appointment. Her hand and arm got more swollen.

'My hand also became mottled, red and angry,' Linda says.

'Luckily, I was told I'd caught the condition early enough for it to be deemed manageable.

'I was given exercises to maximise lymph drainage and was taught how to do manual lymphatic drainage - a form of massage that aims to redirect lymph fluid away from the swollen area. I was also told not to put strain on the affected areas, such as carrying something heavy.'

Skin care is also important - the advice is to use aqueous moisturising cream every day to prevent dry skin or flaking, which could lead to infection.

'Finally, I was given compression garments - thick bandage tubes and gloves to wear on my left arm and hand every day,' Linda says.

'Even doing that, I experience a constant, 24-hour dull ache. Overworking the hand and arm can lead to painful pins and needles. At the end of the day my hand and arm can throb so much I have to take painkillers.'

Linda's life started to get back on track. But then, on a visit to see her local GP about dizzy spells in April 2006, Linda found herself in a familiar situation.

'My GP wanted to take a blood pressure reading, but she didn't have a cuff long enough to take the reading from my leg.

'I presented her with my Lymphoedema Support Network card, similar to a donor card, which said no procedures were to be carried out on affected areas.

'But with heart problems in my family, my doctor insisted we had to check there was nothing seriously wrong, so she took a reading from my right arm.'

A week later the dreaded symptoms appeared. First Linda's watch strap started to feel tight, then her knuckles felt swollen and she was unable to clench her fist.

'I visited the lymphoedema clinic straightaway, and within minutes they diagnosed me as having it in the right arm and hand. A matching pair - all, I believe, due to poor treatment. Now, a year on, and I'm back to visiting the clinic every four months.

'The condition hasn't got any worse nor has it got any better. But it has certainly affected my life. I can't lift up my two-year-old granddaughter for a cuddle, because it could worsen the condition. I wear the compression garments all the time, and I hate the summer when they are so visible.

Worst of all, I hate that I can no longer wear my wedding ring, despite having had it enlarged once already.

'Developing a life-long condition due to bad lifestyle or hereditary factors is something you have to accept.

'But developing one because of the lack of awareness of healthcare professionals is not easy to cope with.'

For more information, visit: www.lymphoedema.org/lsn or tel: 020 7351 4480.







Latest comments

16.05 | 17:31

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16.05 | 10:20

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