Archives for posts with tag: Mt Wilga Hospital

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.

http://ntpages.com.au/lisahiggins

header

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.

http://ntpages.com.au/lisahiggins

 

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!

IMG_1794.jpg

http://lisahiggins.ntpages.com.au

It seems like a lifetime ago already – thank goodness I have my conference handbook to refer to because I wouldn’t remember one-tenth of the topics that were covered otherwise.

First up on Saturday morning there was a discussion on the relationship between clinical measures and underlying physiological changes – a couple of interesting points here – it has been demonstrated that tissue composition changes are evident in those with mild lymphoedema and that the impact of these changes depends on whether the affected arm is dominant or non-dominant.  What that means is that generally, there is more fat present in the unaffected limb if the non-dominant arm is affected!  Interesting.

Next was a presentation on segmental impedance thresholds for early detection and monitoring of upper limb lymphoedema. Early detection of LE is important for effective treatment outcomes so finding a way of measuring changes effectively is essential.  Segmental measurements of the arm with Bioimpedence Spectropscopy was shown to be a reliable way of measuring early changes after measuring one hundred women without a history of breast cancer or lymphoedema.

There was a clinical practice review of the pitting test.  The pitting test is widely used to assess oedema in healthcare, but there is no standardisation between clinicians – each person’s touch is significantly different.  Three different therapists performed a pitting test assessment on six women with unilateral breast cancer related lymphoedema.  The therapists were all reliable in determining whether the tissue was pitting or non-pitting but had less agreement on the tissue qualities.  This study reinforces the need to develop a standardised pitting test protocol with guidelines for interpreting the test results.

Assessment of oedema in the breast skin following skin-sparing mastectomy and immediate reconstruction.  As more women are choosing to undergo the above procedure it has been noticed that many experience oedema in the skin postoperatively but assessment of change has only been subjective so far.  53 patients were measured using the Delfin MoisturemeterD Compact to determine the percentage of fluid within the dermis.  The conclusion was that the use of the Mosituremeter allows accurate documentation of localised and sub-clinical oedema in breast skin following mastectomy and reconstruction.

A patient self examination survey for staging the severity of lymphoedema.  Fifty patients with either unilateral primary or secondary LE completed a number of questionnaires.  One form was repeated one week after either by email or posted off.  The patients were assessed with bioimpedance and staged by two therapists using the ISL staging system.  The results of this study are currently being collated.

Current overview of surgical treatment of lymphoedema.  Dr Suami spoke of the different types of surgical treatment available for LE: Liposuction, lymphovenous shunting, lymphatic grafts and vascularised lymph node transfers.  Refinements in microsurgical techniques and improved imaging devices may lead to the establishment of standard surgical treatment of lymphoedema – wouldn’t that be amazing!!

Liposuction.  The Macquarie University Cancer Institute is developing protocols for maximising outcomes for liposuction surgery for fatty lymphoedema limbs in Australia and NZ.  There are very specific criteria for eligibility and bioimpedance and MR imaging were used to determine eligible candidates.  Patients had pre-operative intensive treatment at Mt Wilga Hospital and there was a significant mean excess volume reduction pre-surgery.  The conclusion of this prospective study demonstrates that in patients with large non-pitting limbs with L-Dex and MRI indicating deep fluid pocketing, a brief pre-operative CLT (that’s MLD, bandaging and physio) session can reduce the liposuction volume needed to achieve maximum outcomes.

Liposuction in the management of persistent arm swelling following conservative management of LE – a similar study to the one above (Alex Munnoch happily admitted that Mt Wilga’s results of pre-surgical CLT seemed much more effective than what they were achieving!).  The conclusion of his study said that liposuction and continuous postoperative compression is an effective treatment for advanced arm lymphoedema.

Diet and its relationship to lymphoedema.  This was a very interesting talk by Dr Kieron Rooney, with whom I had the pleasure of talking during the lunch break – he had been drinking numerous fizzy drinks daily and eating junk food and suddenly realised he was doing research on diet but yet wasn’t reading his own advice!  He gave up sugar and lost a significant amount of weight which he has kept off easily simply by keeping off the refined sugar (yes, he does exercise too!).  He is looking to see what fuels the capacity for change of lymphatic fluid into adipose tissue.  It’s the advice we hear again and again, eat food in as close to its natural state as you can – avoid the processed food, stick with real food.  Right on!

Liposuction for advanced LE – impact of liposuction on limb volumes. Surgical treatment results from Macquarie University Advanced LE Assessment Clinic. The conclusion of this study stated that liposuction is a safe and effective option for carefully selected patients with advanced lymphoedema.

Liposuction for leg LE.  Alex Munnoch reviewed 7 years’ experience of performing liposuction for primary and secondary leg LE.  The conclusion of the review stated that liposuction and continuous postoperative compression is an effective treatment for leg lymphoedema, although obtaining 100% reduction is much more challenging, particularly in primary LE patients.

Vascularised lymph node transfer for secondary LE.  This was of particular interest to me because of my contact with Helen here in Sydney who has had the procedure.  (Helen, you have a lovely lymphoscintigraph!)  Lymph node transfer is emerging as a treatment for LE.  Eight patients who had tried conservative therapy and experience progressive swelling, frequent infections or inabilitly to tolerate compression garments were offered LNT.  All had MRIs, lymphoscintigrams, L-Dex readings and limb volume measurements pre and post operatively as well as ultrasound.  The early results indicated no significant volume reduction with LNT but there were subjective improvements in skin infection frequency, softer arms as well as maintenance of oedema control without garment wearing.

Finally, there was a presentation by Dr Susan Gordon of James Cook University on the prevention and management of lymphatic filariasis related LE. Very interesting talk – way too much info to put into a few words.

And that brought us to the conclusion of the Conference.  Oh wait.  There was the closing ceremony, the one with the Islander dancers, the one where they got poor victims up on the stage to try the death-defying hip gyrations that were exhausting to watch, far less try to do.  But well done to all who participated (I kept my head so far down it was almost in my lap!).

ImageImageImageImageImage

 

Image

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.

Image

Gluten free, dairy free cupcakes

Image

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?