Archives for posts with tag: Dr Helen Mackie

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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Chris came to me at the beginning of January, having had a squamous cell carcinoma removed and a total axillary clearance with four weeks of radiation last October.  The swelling in her breast started almost straight away after the surgery and she had been for a number of treatments with a physiotherapist who diagnosed her with lympoedema.  She also has a small amount of cording which doesn’t seem to impact her too much.  At the time of her first visit her L-dex was at 19 (it had got as high as 32, so that was a major improvement).

She is a fit, active 71 year old who delivers pamphlets and who goes to the beach every day.  She has made a lifestyle choice to be a sun-worshipper and doesn’t use sunscreen because she feels it’s filled with chemicals.  Otherwise, she’s really healthy, takes heaps of vitamins and generally lives a very social life.

But the lymphoedema was really bothering her.  After her first treatment I sent her to get a compression sleeve and unfortunately she was given one that was not strong enough.  I also made her a “swell spot” from Mobiderm bandaging to use in her bra to break down some of the fibrosis in her breast.

At the second treatment she said she was really pleased with the “swell spot”, she felt the swelling was down and she was more comfortable.  We added some laser to the treatment and added a homeopathic remedy called Lymphomyosot which she bought from the homeopath next door.

I didn’t see her for about ten days as she was seeing the physiotherapist in that time.  Her elbow had swollen up before she saw the physio, so luckily she was given some bandaging at that visit which helped, but there was still significant swelling.  She came into the treatment with bandaging just around her elbow which she had done herself, having cut the bandages to size.  I explained that bandaging had to start from the fingers and continue all the way up.  We discussed getting her a ready-made Mobiderm sleeve to wear at home at night to see if that helped.  In the meanwhile I cut a small piece of Mobiderm bandaging to place at her elbow until the sleeve arrived.

At the next visit the following week she tried on her new sleeve and loved it so much she decided then and there to wear it all the time. It was much more comfortable than her usual compression.  I suggested she bandage her hand at night just to make sure fluid didn’t make its way down (there had been some the previous week) and gave her a DVD to watch to help her learn how to do it herself.

The following week she had a follow up with her physio who said L-dex had gone down from 22 to 15, great work!

But the best news is, less pain, less swelling and discomfort.  All in one week.  What more could you ask for?

She also had a consultation with Dr Helen Mackie at Mt Wilga who suggested she think about having one week’s intensive bandaging.  She’s seriously considering that when she gets back holiday.

Here she is sporting her Mobiderm garment – out and proud!

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On Saturday 15th March 2014 I attended the first Lipoedema Australia Support Society (LASS) Conference in Sydney.  This was a remarkable event on so many levels.

Firstly, LASS was set up by women who suffer from the condition Lipoedema as a support group, in order to share their stories of diagnosis (or non-diagnosis in most cases), treatment, diets, where to find clothing/shoes/boots that cater for the condition, practitioners who are open to learning about the condition and many other issues.  These women have to fight every step of the way to get their condition recognised and treated and they support each other on their journeys of understanding and acceptance.

Having said that, I need to point out that LASS has no funding.  And the members are not medically trained professionals who can give advice.  And yet, this is a powerful group of women.

Four ladies spent untold time organising this conference, contacting health professionals who came to talk at the conference at their own expense!  Without exception.  Have you ever heard of such a thing?  When they first started organising the event they had no idea how many people would be attending but the room catered for 50 … there was a waiting list.  Besides the committee ladies there were those who brought prizes for the raffles and most importantly, those who made amazing cakes.

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Gluten free, dairy free cupcakes

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Anniversary cake with the LASS logo, how very professional … and yummy

The first speaker was Dr Helen Mackie, who has worked at a variety of hospitals in Rehabilitation Medicine and is now in private practice at Mt Wilga Hospital in Hornsby, Dalcross Adventist Hospital and Sydney Adventist Hospital.  She is the Medical Advisor to the Australian Lymphology Association.  She spoke about surgical options for lipoedema, in particular about tumescent liposuction (here’s a link to the Wikipedia listing on tumescent liposuction).

Next we had a preview of Fat Legs and All, a puppet film created by Avril Lunken in consultation with LASS, to help raise awareness of lipoedema.  Avril  is an OT who usually creates a flyer for lymphoedema awareness month but took a very big leap out of her comfort zone this year, working with writers, puppeteers and musicians to create a visually stimulating, educational, short story.  Amazing job.

Dr Lyndall White then spoke about overcoming the emotional challenges of lipoedema.  Dr White is a Consultant Psychiatrist in private practice at Belmont Private Hospital.  She talked about PERMA – Positive emotion; Engagement; Relationships; Meaning and Achievement.  Most important, talk to you family and friends for support and reach out to a professional to help you come to terms with what is happening in your body.

Then the man who has it all … all the up-to-date scientific research into lymphology as well as a very cheeky sense of humour and an ability to speak without taking breath … Prof Neil Piller, Director of the Lymphoedema Research Unit at Flinders University.  Neil is passionate about lymphology and is a patron for LASS.  He tirelessly educates about lymphoedema worldwide and is very generous with his time.  The take home message (if I tried to summarise his talk I’d never finish this post) is … try and eat a Mediterranean diet – one rich in olive oil, coconut oil, avocado oil, red wine (after all, it does have Resveratrol), almonds, walnuts, fruits and vegetables and oily fish like salmon, tuna and herring.  And exercise as much as you possibly can.  He had us all up taking five deep breaths, extending our arms as far back behind us as we could go (I give this exercise as homework to my lymphatic clients) to stimulate the lymphatic system.  He recommended swimming, yoga, tai chi but also any activity that your body is comfortable with, so if you like running and it doesn’t cause you pain – then run!  I know the running comment was of particular comfort to a number of women who enjoy running but have been told they should not do it and so were in two minds.

Next up was Kristin Osborn, owner and therapist at Newcastle Lymphoedema Clinic, also a sufferer of lipoedema.  She was wearing a fab tee-shirt with “Hippy Lippy Lady” on it, which is the name of the Lipoedema Awareness Campaign she has created.  She spoke about the Reid Sleeve Compression Garments, the only garments recommended for lipoedema patients (I’ll be looking more into these, that’s for sure).  She has set up a seven step program to treat her clients; anatomy education, products, handy hints & tips, infection control, safe and effective exercise, self massage and diet.  Her website has lots of great information you can take to your GP to try to educate them!  www.newlymphclinic.com.au

Following Kristin, we had Dr Susan Hodson – Medical Officer, Lymphoedema Services, Ballarat Health Services, Queen Elizabeth Centre, Ballarat.  She has written a paper called Lipoedema management: gaps in our knowledge.  At the start of her talk she jokingly introduced herself as “one of them”, as in … a medical practitioner.  But clearly she is different.  She also advocated exercise and diet in the management of lipoedema and spoke about some possible imbalances to look for, eg, check your thyroid function; cortisol levels (cortisol has been linked with weight gain which can play a part in lipoedema); and check the endocrine system as insulin production may be up (also a factor in weight gain).  Yet another passionate professional working to help ease the pain of lipoedema.

Lastly we had three members talk about their personal experiences getting diagnosis/treatment for their lipoedema.  It is not appropriate to relay those stories here but I’d just like to commend these women for their bravery in sharing experiences and photos with the gathering.

Here’s a link to a fantastic YouTube video entitled, You Mean It’s Not My Fault: Lipoedema, a Fat Disorder.  Well worth watching and sharing.

I’ve  barely scratched the surface of the day’s proceedings.  I met many courageous sufferers of lipoedema and some passionate practitioners (and some women who were both) and I just know that we can raise awareness of this condition.  We all just need to get talking.  Who’s with me?