Hi all

I realised recently that I haven’t published a newsletter in eighteen months – well, no-one can complain that I’m clogging up their mailbox!

I have lots of news to share about The Oasis … read all about it here.

I wish you all a very restful and healthy Christmas and New Year.

 

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Last Monday night, at our monthly support group meeting, Nicola Beverley came to talk to us about makeup post cancer treatment – she runs Make Me Me,  a voluntary, community based event created for women dealing with cancer or long term illness to spend an afternoon together being pampered.  Watch her introductory video here.  A number of the ladies had been on the Look Good Feel Better program but felt that perhaps they weren’t quite ready to take in all it had to offer as they were still in treatment and tired and feeling pretty wretched (though the information about scarves and wigs was universally appreciated!).

Nicola’s idea, while very similar, has a different time frame.  The perfect example was Bernadette, who volunteered to be made up on the night.  She’s about two years post diagnosis and is back at work full time, back to “business as usual”.

Nicola went through describing the products she uses, all as natural and chemical free as possible.  Natural fibre application brushes.  Natural cleansers. Then she applied makeup on Bernadette, explaining how to achieve the natural look easily.  The most exciting part was towards the end when she showed us how to do eyebrows – not using a pencil but using a brush.  The result was amazing and Bernadette was almost jumping up and down with excitement – “EYEBROWS, I HAVE EYEBROWS!!!”.  It’s the little things that can sometimes make the biggest difference.

Here are some before, during and after photos for you …

Nicola’s idea is to teach women how to do their make up post treatment in the relaxed environment of their own home – invite a few girlfriends round, open a bottle of wine, have some nibbles and learn about makeup.  Sounds a lovely idea to me.

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One of my clients, Chris, has very kindly given permission for me to share her photos and reports to write this blog.

Chris is what I’d call a very “motivated” client.  She is determined that she will kick lymphoedema’s butt, no matter how many times I tell her that she can control it with good maintenance but it will always be a part of her life.  She believes in positive thought and who am I to knock that?

Chris first came to see me in January 2016 at the age of 72, complaining of swelling and discomfort mainly in the left lateral chest wall and through to her back as well as her upper arm.  She had had a squamous cell carcinoma removed in the area (as well as many others in different parts of her body), along with a total axillary clearance and radiation to the area.  The swelling became noticeable almost as soon as the radiation finished in October 2015.

She had a number of physiotherapy sessions prior to coming to see me but hadn’t found these beneficial. I checked her self-clearing technique (she was directing fluid to the armpit so we adjusted that and I showed her how to do deep breathing as well).

Over the last year we have used a number of techniques.  Manual Lymphatic Drainage is the main therapy used but I have also added Low Level Laser and deep fibrosis techniques.

Chris uses a Mobiderm arm sleeve day and night (she finds this more comfortable than elastic compression sleeves).  There are days that she does use her normal compression sleeve as well, but she finds the Mobiderm more effective.

I have fitted her for a compression vest which she also wears daily, with Mobiderm swell spots inserted in the areas of greatest fibrosis. Photo below

Chris uses her own low level laser daily at home – she has a Pulse Laser.

Once a week she applies kinesiotape down her arm and across her back – she takes this off just before coming to her MLD sessions and reapplies once she gets home.

She swims daily in the ocean when it is warm enough and does a lot of walking (she delivers pamphlets every day) and running.  She is incredibly fit, active and full of energy (she credits the energy to taking lots of spirulina, but I can’t vouch for that – she’s just full of life!).

After a few months of treatment Chris went to Mt Wilga Hospital for a three week intensive course of treatment. She now has a very personal relationship with Dr Helen Mackie!

Even though visually you cannot tell Chris has lymphoedema, she is aware of it constantly and it affects her daily life.  So she went to see Dr Mackie and the surgical team at Macquarie Hospital in October 2016, to see if perhaps there was a surgical solution to her issue.

She spent about four hours with the team, being measured with different diagnostic tools and when using Indocyanine Green (ICG) Fluorescence Lymphography, they found she had some issues in the dorsum of her hand but that her arm was ok. There was also an issue in her lateral chest (where she had the most discomfort) and no evidence of functional lymphatic vessels, with no lymph movement down to the lower abdomen. She did however have a strong pathway across her chest to the opposite side, as well as one on her back going in the same direction. And the scans showed up lots of fibrosis in the chest wall which needed to be broken up with deep friction massage.

Armed with that information, we were able to tailor her treatment with a real focus on breaking up the fibrosis using laser and deep work, as well as stretching of the arm/shoulder area.

Chris had follow up scans on 23rd March 2017 and the difference was quite astonishing! She had a new pathway going from her armpit down into the abdomen and the fibrosis had reduced significantly. So much so that they felt she wasn’t a surgical candidate and she should continue the conservative treatment in the pathways that are now available!

If only more people had access to scanning using ICG – it has been a very useful tool for customising Chris’ treatment and has been beneficial in her progress which in turn has made her much more comfortable with her lymphoedema.  There have even been times when she’s chosen not to wear all her compression for a few hours and she’s enjoyed the freedom that’s given her.

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This weekend was spent learning how to do Lymph Taping.   We were taught by Joyce Bosman, assisted by my one Vodder trainers, Jan Douglass.

Lymph Talking was developed in 1978 by Dr Kenzo Kase in Asia (Korea and Japan) and specific treatment methods for lymphoedema were not developed until 1995 by Ruth Copee from the USA.  The Summer Olympic Games in 2008 was the worldwide breakthrough on taping – it finally became known to the public.  There are many different names for the method – Kinesio-taping; Medical Taping Concept; Taping NeuroMuscular or NMT Methods, to name a few.

Lymph Taping uses an elastic cotton tape, we used Cure Tape all weekend.  Some of the benefits are:

  • increasing circulatory action and lymph flow
  • analgesic
  • maintenance and reduction of lymphoedema (primary and secondary) in limbs, face, breast, abdominal and genital areas
  • reduction of fibrosis
  • scar reduction
  • reduction in sinus or cold symptoms, jaw irritation, ear infections or swelling around the eyes
  • reduction in swelling post surgery or injury
  • reduction of hematomas and bruising

Lymph Taping for lymphoedema is most effective in Stages 0, 1 and early stage 2, before the fluid turns to fat or becomes fibrotic.

The tape is applied over stretched skin which causes it to lift, creating space underneath.  Wherever the tape is applied on the skin creates low pressure.  It is applied in strips which creates an area of low pressure (under the tape) and high pressure next to it.  Fluid naturally flows from high pressure to low pressure so the free fluid in the tissue under the skin will be “sucked up” by the tape.

Here are some photos of the day …

As you can see, the tape comes in a variety of colours and can be cut to different widths to fit in with whatever condition is being treated.  I haven’t included photos of treatment of breast oedema, abdominal and genital oedema for obvious reasons, but we covered all of those too.

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The Dr Vodder School has posted two exercise videos online especially for people with upper and lower extremity lymphoedema and lipoedema. Only with German commentary at the moment but they will be translated soon. Feel free to circulate.


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Did you know that there is an online event going on right now, called The Lipoedema Worldwide Summit 2016, organised by The Lipoedema Project & Lymphatic Research & Education Network (LE&RN).  It’s free to register and listen to all the talks and you have the opportunity to buy all of the talks at the end of the Summit if you would like continued access.  Well worth checking out for all the latest information and theories about Lipoedema.

 

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This was one of the many powerful presentations at the Conference, presented by Louise Koelmeyer of Macquarie University. What made it so powerful was that it was a case study of a patient who had undergone surgery and she and her husband were both there to discuss it with us first hand.  So many of the talks at the Conference are reports and statistics, so to be able to interact with an actual “case study” was invaluable.

The patient was 48, had six children and was then diagnosed with a gynaecological cancer, requiring surgery/chemo/radiation.  After her treatment she developed lymphoedema in her left leg.  She lived “out bush” so getting treatment was difficult but she did manage it fairly regularly but couldn’t attend often enough to control the swelling. She had to give up her work as a teacher as she couldn’t move easily but more importantly her leg was so large she couldn’t find clothes or shoes to fit so getting out was becoming increasingly difficult on numerous levels.

Her team of therapists spoke to her about surgical options being offered at Macquarie University and encouraged her to get in touch to see whether she was a good candidate for liposuction.  She went to the first assessment and struggled to get up the eight steps to the building, using her upper body strength to haul herself up.

She was found to be a suitable candidate for liposuction and from memory they removed 10 litres of fluid from her leg.  Directly after the surgery she was put in very heavy compression and she was sent for her recovery therapy to Mt Wilga Hospital in Hornsby.  The communication between her and Louise Koelmeyer was free flowing, they used Skype, texting and of course phone calls and when she developed an infection and communicated that to Louise she was quickly hauled back into hospital for treatment and monitoring.

Three months after her surgery, at a scheduled checkup, she was sitting with her good friend at the Opera Bar, looking up at the Harbour Bridge – she wondered what it would be like to climb it.  So, having had a glass of wine or two, she got on her phone and booked two tickets for the next day!  And three months after her surgery she climbed the 1332 steps on the bridge! Unbelievable!  At the six month mark she was running 10km.

Now I have to point out that one of the non-negotiables of this surgery is the wearing of compression 24/7.  If you cannot agree to this condition you will not be considered a suitable candidate.  This patient is 100% compliant with her compression.  She has two garments, the first is 30 mmHg and the second is 60 mmHg.  That’s some serious compression and getting it on requires her husband’s help.  Initially she was putting the 60 mmHg stocking on first but through trial and error has found it works better for her to put the 30 mmHg on first then the heavier compression glides on more easily.  It takes her about ten minutes daily to don her stockings.  She has on occasion fallen asleep after her shower at night, waiting for creams to dry (very important to look after the integrity of the skin) and woken up in the middle of the night and put her compression on straight away because it felt wrong to be without it.

Now here’s the result – so far (she is still being followed up and measured regularly and each time has a continued loss of fluid/circumference) – she and her husband have been on a round-the-world trip because … she can fit into normal clothes and shoes so can go to different climates with ease.  She is back working three days a week.  Energy levels are back.  She looks absolutely normal.  She’s costing her husband and absolute fortune in shoes!

There is hope with liposuction, but it takes work and commitment – daily.  If you feel you can commit to this, then please, talk to your therapist about your options.

Thursday 23rd June 2016 – a follow up … here’s a link to an article in the Sydney Morning Herald about the same patient, with photos of before and after.

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I wish I had taken some notes is all I can say, but I was so mesmerised by Dr Ramin Shayan of the University of Melbourne, Australia that I just sat and listened.  So I’ll have to rely on what impacted me most to pass onto you.

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Dr Ramin Shayan

First of all I have to mention Dr Shayan’s humility – he addressed the Plenary Session of the Conference on the last day and started out by saying how much more we all knew than him and he was in awe of being in a room of so many therapists with so much knowledge. Well, you could hear a pin drop – we’re used to being ignored in the medical world so having a surgeon commend us was a big thing.  He added that he’s usually stuck as the last speaker at medical conferences after many delegates had already left and those who were still there were almost asleep. Turns out that lymphoedema/lipoedema is ignored no matter what level of medical training you have.  Isn’t that a really sad indication of our healthcare system?

Dr Shayan talked about the surgery he is doing with lymphoedema and lipoedema, in particular lympho-venous stenosis – attaching a lymphatic capillary to a vein to bypass the damaged area.  They are having excellent success with this procedure.

He also specialises in liposuction and debulking for lymphoedema and lipoedema so if you are considering surgical treatment, I can full recommend him as a caring, knowledgeable surgeon who understands the lymphatic system to a microscopic detail.

Dr Shayan was also present at the second Lipoedema Conference held last weekend  in Melbourne and was interviewed by The Project for their package on lipoedema which aired this week on Channel 10.  Watch it here.

 

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I’ve just returned from the 11th Australasian Lymphology Association Conference, held in Darwin from 26-28 May, 2016.  These conferences are filled with information on the latest research which is always interesting and a bit mind-boggling at times.  I was very excited that this year there was a real focus on Lipoedema, a condition I am passionate about.  I’ll try and set out as much useable information as I can from two speakers in particular – Dr Ramin Shayan from the University of Melbourne, Australia and Associate Professor Karen Herbst from the University of Arizona, USA.  In this post I’ll focus on Dr Herbst.

Firstly, according to Dr Herbst, a few of the symptoms of lipoedema (for more information click here):

  • fatty enlargement of limbs (firstly legs, arms can develop later)
  • pain
  • predominantly women affected, if men then they have low testosterone or liver disease
  • bilateral and symmetric
  • sluggish lymph
  • can have pitting oedema
  • vascular fragility and bruising
  • varicose veins
  • persistent enlargement of limb even after elevation
  • calorie restriction doesn’t affect size of limbs
  • swelling increases with heat
  • disproportion between upper and lower body
  • feet not involved in early stages
  • hyper mobility
  • low tissue resistance
  • hypothermia of skin

There are different stages:

  • Stage 1 – skin still smooth but texture feels different
  • Stage 2 – skin is lumpy and nodular
  • Stage 3 – lymphoedema is also present

Nodules can be felt in all stages and the good news is that not everyone progresses through all stages.

There are different types:

  • Type 1 – buttocks and hips
  • Type 2 – waist to knees
  • Type 3 – waist to ankles
  • Type 4 – arms only
  • Type 5 – lower extremity only

The abdomen is involved as well as the area above the pubic area.

OK.  So here’s the helpful information, now that you have an idea of what’s involved symptom wise.

  • healthy, anti-inflammatory diet (high fat, high protein and low processed carbohydrates)
  • movement (whatever doesn’t cause a flare up of symptoms, water based activities seem to work best)
  • manual lymphatic drainage (find a practitioner here)
  • bandaging (if lymphoedema or fibrosis is also present)
  • compression (20-30 mmHg)
  • pumps (if you react well to manual lymphatic drainage generally, make sure there is an abdominal piece)
  • medications – work with your GP

Dr Herbst has found that amphetamines are helpful (these are more available in the US, basically diet pills).  You would need to consult with your doctor to find out more.

She also recommends Butcher’s Broom as it helps to increase lymphatic pumping and helps prevent venous insufficiency.

Here are the BIG yet surprisingly simple things you can do for yourself:

  • intermittent fasting. This helps get natural amphetamines into the body. She recommends a 20 hour fast – water and herbal teas during the day and normal dinner.  For more information she recommended the regimen by Dr Jason Fung.  There is a book available but I can only find the Kindle edition at the moment
  • selenium – it inhibits inflammation and decreases oedema. Her recommendation is to get that from eating three Brazil nuts a day! You couldn’t get much easier than that.  She suggests starting with one nut and increasing to three
  • lemon – half a lemon squeezed into water daily
  • avoid MSG

Dr Herbst recommended the book Lymphedema and Lipedema Nutrition Guide – I could only find a Kindle edition on Amazon but you may find it in your bookstore.

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I can’t tell you how impressed, excited and amazed I am with the wonderful ladies of the Lipoedema Australia Support Society (LASS).  They have once again crossed boundaries and have been featured on The Project on Channel 10.  The Project went to the second LASS conference last weekend and filmed there as well but didn’t feature that footage in the package, but they did interview Dr Ramin Shayan of the University of Melbourne, Australia.  He is the group leader of the Lymphatic and Regenerative Surgery Group at the O’Brien Institute and his focus is surgery for lymphatic conditions, including Lipoedema.

I will be working on a post about Lipoedema news at the Asia Pacific Conference I attended a week and a half ago, including information from Dr Shayan’s presentations and will hopefully have that ready later today.

Here’s the link.  Have tissues handy!

 

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