Archives for posts with tag: compression

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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.

http://ntpages.com.au/lisahiggins

 

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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.

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!

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http://lisahiggins.ntpages.com.au

A couple months ago I wrote a post about Mobiderm bandaging and mentioned that I was going to measure my client for a custom made garment with a zip.  The garment arrived a couple weeks ago and last week she came in wearing it so that I could see how it fit.

Her impression so far is that it is easy to get on (though she does have to have a rest half way through putting it on) and comfortable to wear.  It is a bit hot but bearable.  She has never been able to tolerate compression before so hearing that she is willing to be compliant is great news.  She’s not sure how much change she’s seen so far but it has only been a week.

Here are a couple photos …

Do you notice something very exciting?  She can wear her normal shoes over the garment!

http://www.lisahiggins.ntpages.com.au

A couple weeks ago I had some training on how to use the Mobiderm bandaging system and I ordered a set for me to use in the clinic as well as some stock on consignment.  I don’t do a lot of bandaging but I was so impressed with how much thought had gone into this system that I decided I’d get a set to use on my existing clients to see if it improved the treatment.

One of my clients has been very indulgent of me and allowed me to film her while I applied the bandaging on her arm – watch the video below:

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Another of my regular clients has given me permission to share her experience with the bandaging.  She has lipo/lymphoedema and has areas of fibrosis, particularly on her left leg.  She comes weekly for 1.5 hour treatments but we haven’t been able to get her into compression.  She had tried conventional compression a few years before but found it very difficult to get on because of her size.

I took some measurements as soon as she came in then applied bandages to her left leg.  I then did MLD to her upper body and right leg before removing the bandaging (she probably had the bandages on for about 35-40 minutes)  and clearing her left leg with MLD as normal.  I then remeasured her at the end of the treatment.

I need to point out here that I have used a modified measuring system for this purpose – I took readings at 10 cm intervals above the ankle and 4cm below the ankle.

.                     before    after

70cm              85          83
60cm              75          74
50cm              65.6       65
40cm              53          52.5
30cm              54          54
20cm              43.5       43
10cm              35          33
ankle               37.5      35
-4cm               28         28
-8cm               26         26

As you can see, there was a reduction in most of the measurements (except the feet which stayed exactly the same).

She said at the end of the treatment that her leg felt a little tender and that continued for a couple days but she was impressed enough that we are going to organise a custom made garment for her that has zippers to make it easier for her to put on.

The Mobiderm bandaging is much lighter than conventional bandages and is very easy to apply.  Have a look at the youtube video above to see just how easy it is.  For more information on Mobiderm please click here.

Here’s a photo of what the custom-made zipper garment will look like:

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http://www.lisahiggins.ntpages.com.au

The most commonly searched term on my blog is “lipoedema”.  There is little understanding out there of the condition and frustrated ladies take to the internet to see what they can find out for themselves, because there are precious few in the medical arena who have any understanding of the condition.

So I thought I’d write a blog on how you can get help – what I’ve found out over the last couple years as to what works and what doesn’t, keeping in mind of course that while one thing may work for you, it may not for someone else.  I’m not going to go into what lipoedema is today as I’ve written a blog on that before, here‘s a Wikipedia explanation.

The first place I send people is to LASS (Lipoedema Australia Support Society).  This is a group of fiercely strong women who are searching for answers and getting information out there in as many forms as possible.  This year a number of them did the unthinkable – they bared their bodies for photos to make posters to put in doctor’s surgeries (or anywhere else they felt it might raise awareness).  You have to understand that most of these courageous women have covered up for their entire lives.  They have a closed Facebook group that you can join and I’d strongly recommend this.  The group has many files with information on diets, treatments that women have tried, surgeons, therapists, compression, financial support available through the government, and much more. They are organising their second Lipoedema conference for June 2016, to be held in Melbourne.

Lipoedema ladies, photo courtesy LASS

Lipoedema ladies, photo courtesy LASS

I’ve learned (from the LASS FB page) that a Lymphoedema and Lipoedema Community Seminar is being held on the Gold Coast on the 10th September at the Beenleigh Distillery/Tavern, 114 Distillery Road Yatala, late notice I know, but if anyone is in the area you should check it out.

On to concrete things I’ve learnt.  Again and again I hear from various sources (including the patron of LASS and my lecturer, Prof Neil Piller) that water exercise is the BEST thing for lipoedema.  That could be as little as floating around in the water if your knees or hips can’t cope with too much more, walking in the water, swimming or doing water aerobics.

If you can’t get into the water, then walking is always good.  Or rebounding.  Or whatever exercise you are used to doing, the main thing is to keep your body moving and active as much as you are able within the constraints of the condition.

Diet.  Now here’s the thing.  There isn’t any one diet that has been proven to help, but there are many diets that have been tried with some success.  The RAD diet by Dr Karen Herbst seems to be very effective.  Prof Piller recommends an anti-inflammatory diet.  To me, they all seem to agree that eating a diet high in whole, unprocessed foods is going to be beneficial.

Treatment.  The most frustrating thing of all is the lack of treatment (other than of course the lack of diagnosis or belief that the condition exists).  Common sense tells us to keep up the exercise and watch the diet but what else has been proven to work?  Nothing.  But, most women do respond favourably to manual lymphatic drainage and compression (obviously if they can tolerate it).  Dry body brushing also seems to help.  There are  deep breathing exercises that have been proven to stimulate the lymphatic system (thank you Prof Piller for his research).  There has been discussion on vibration plates and Prof Piller has done some research and found that these can be beneficial if used on a very low setting for a short period of time.  Care must be taken with other pathologies such as weak knees or hips.

The Rolls Royce of treatment is WAL (water assisted liposuction).  The link is to a study published on PubMed.  This is a specialised form of liposuction which minimises the damage to the lymphatic system, uses local anaesthetic rather than a putting you completely under and harvests fat rather than general tissue.  There are a number of procedures over a few weeks and compression is worn afterwards to maximise the results.   Post operative recovery is excellent.  This treatment is not available in Australia yet but Germany is advanced and experienced in the procedure and the follow up recovery period.  German clinics and hospitals are at the forefront of lymphatic research and treatment.  The main form of liposuction used for lipoedema in Australia is called Tumescent Liposuction.

Where to from here?  That’s up to you.  If you haven’t been diagnosed yet, but suspect that you have lipoedema then I’d suggest finding a doctor, physiotherapist or massage therapist who can diagnose you.  Easier said than done.  There is a list of therapist and doctors on the LASS FB page that may be of assistance.  In Australia you can get a care plan to see a physiotherapist for five sessions that Medicare will subsidise.  Massage therapists are not covered by Medicare but most will be registered with private health funds which can offer rebates to help offset the costs.

I am more than happy to talk to anyone about options if you’d like to send me a message.  This condition is something I am passionate about and education is vital, there is not enough information available and it can be very confusing and overwhelming trying to sift through what is out there.

http://www.lisahiggins.ntpages.com.au

The second day was always going to be full … I was to attend the Smith and Nephew hosted breakfast session – breakfast at 7.30 and a talk at 8, followed by the full schedule of talks from 9am to 5.15pm, followed by the Conference Dinner at the War Memorial from 7pm till 11pm.  But it started slightly differently – I woke up and thought, “wow, it’s much lighter than yesterday” then looked at the clock and saw it was 7.35am!  Not a good start.  I did manage to get to the start of the Smith and Nephew talk, well, it was 8.03 and I had only missed the introduction.  I thought that was a pretty heroic effort.

The talk was pretty much the launch of the JOBST Elvarex Plus, the latest innovation in compression.  The garments are made using 3D knitting techniques and are seamless and the edges have been improved so there is no unravelling.  We were shown some of the machinery that was designed specifically to test the hardiness of the material.  They look pretty impressive, the fingers and toes have no ridging or seams and they seem to be exceptionally well designed, click here for more information.  At the moment they are only available in custom-made garments.

There were a number of presentations on studies that morning, I’ll give the titles of the talks and the conclusions in brackets – The prevalence of LE following gynaecological cancer (one-third of women have swelling by 12 months post surgery, three-quarters by 24 months); incidence and risk factors for LE at 18 months following surgery for early breast cancer (at 18 months, 10% had swelling, mainly in women who had node dissection); generalised oedema post taxane-based chemo in women with early breast cancer (incidence of LE in the arm on affected side increased at 6 months after completion of taxane-based chemo); Improving the way we measure bilateral upper- and lower-limb lymphoedema (Bioimpedance spectroscopy (BIS) is an effective diagnostic tool for measuring lymphoedema).

I attended a Kinesio taping workshop that has inspired me to go off and do the course.  We used it on a muscular level, as we didn’t have guinea pigs with lymphoedema to experiment on, but we saw instant improvements in the range of motion in a number of people with shoulder issues, pretty amazing.  I’ve already sent off for details of the next course!

Kinesio tape

Kinesio tape

The afternoon session had talks on: the feasibility of night-time compression systems for breast cancer related lymphoedema (early results suggest use of night-time compression is not significantly better than standard care, however, they are preferred due to their comfort and convenience in application); Review of the evidence of lymphoedema treatment effect (reviews consistently concluded that complex physical  therapy is effective at reducing limb volume. Reductions were also recorded using compression garments, manual lymphatic drainage and compression pumps. Insufficient evidence to support these treatments as stand-alone strategies); low-level laser therapy (LLLT) for lymphoedema (this was a review of a number of studies, which concluded that there is an emerging and reliable evidence base for the positive effectiveness of LLLT for lymphoedema); LLLT for fibrosis, capsular contracture of post-mastectomy breast implants (this study was done on mice, placing silicone implants subcutaneously on mice then irradiating the site to induce fibrosis.  Results – no capsular contracture in either group, but the implants receiving LLLT had tissue that was better “organised” and had less inflammation.); Do women with breast cancer-related LE need to wear compression during resistance-exercise? (no change in L-Dex readings were observed for either compression or non-compression control groups, immediately post-exercise and 24 hours post-exercise); The acceptability and perceived effectiveness of treatments prescribed for the management of LE (this was a survey sent out to members of the LA Associations of Victoria and Queensland – outcome was – understanding patients’ perceived acceptability and effectiveness of treatments is necessary to determine whether treatment strategies proven clinically effective are feasible in the real-world settings); Imaging in LE in clinical practice (Dr Keely talked about Venous Duplex Scans, Ultrasound of soft tissue and Echocardiography).

A lot of the talks were very evidence-based and statistical which is why I chose to list them out with their conclusions.  The ones that made an impact on me were: the studies on using the Low Level Laser, these showed benefits to using LLLT and I felt justified in purchasing one last year; and the study on wearing compression during exercise – I would have expected there to be a difference, but I think the take away message was that it’s a personal choice, wearing the sleeve will not do harm (of course there’s always the odd person who’ll prove that wrong!) and for some there may be an improvement, but try it and see.

Then there was the conference dinner.  It was held at the beautiful War Memorial.

war memorial view We walked through parts of the Museum to get to the event but it wasn’t really long enough to have a proper look at the exhibits unfortunately.  There was an opening ceremony with Maori dancers performing a number of dances, culminating of course with the Hakka, always an awe-inspiring event.  Literally as we finished the main course a DJ started to crank up the music and in an instant the dance floor was filled with women – I’ve never seen so many women dancing in one spot in my life. I asked one of the guys the next day if he found it odd – he really did!  And we boogied until after 11 (I was dragged onto the dance floor by those who shall remain nameless … Kelly!!!!!).

All in all a very full day.

If you’d like info on any of the talks, please message me.

Day 3, coming up!

I won’t have the time to write a proper blog post about the conference until I get back to Sydney next week, but I thought I’d share a few photos in the meantime. I’m posting from the iPad, so apologies for any lack of formatting and alignment.

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The Jobst Man, I thought a very clever way of showing all over compression.

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Compression from Cosmac.

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Kinesiotaping workshop

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Auckland War Memorial, conference dinner and lots of dancing – the male delegates (about twelve of them) must have felt slightly outnumbered on the dance floor!

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View from the War Memorial

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Closing Ceremony celebration

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I’ve been following Helen’s blog (http://lymphnodetransplant.wordpress.com) since before she had her amazing surgery back in March.  Before then, I had no idea that it was even possible to transplant lymph nodes and so I was very interested (and to be honest, excited) to see how she went.  Helen has been very open with sharing the ups and downs of her surgery and has continued to bring information on lymphoedema, manual lymphatic drainage, exercise, self massage, bandaging, compression – all the important things when dealing with lymphoedema.  I’m sure her blog has brought answers to many out in the real world who are looking at options to manage their lymphoedema, as there’s not much available written from a patient’s perspective, the info that is out there is all in doctor speak.

I received an email from Helen after my first week of Vodder training – she had calculated when I’d be back in the clinic after my training and wanted to come in to have some Vodder lymph drainage with me and to try my laser (http://www.riancorp.com/FAQ/frequently-asked-questions-ltu-904-laser-for-lymphoedema.html) to see if it helped with her scar.  So we scheduled an hour and a half appointment so we could discuss her case history and have enough time to do some laser as well.

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Riancorp Laser -http://www.riancorp.com/FAQ/frequently-asked-questions-ltu-904-laser-for-lymphoedema.html

Yesterday was the day.  I was very excited to meet her finally.  It’s always interesting to meet someone after only communicating in writing, you get to hear accents.  Helen is originally English and I’m originally from Trinidad.  There was so much to say.

Firstly we took some measurements of her transplant leg (I didn’t tell her what the measurements were – there were times early on when Helen was measuring every day and it got a little disheartening for her when things didn’t reduce as quickly as she imagined and the measurements were more for my information so we could monitor her progression).  I have to say, her leg actually looks great, as does the scar, she feels the knee isn’t working quite the way she’d like and she’s still getting swelling after exercise (it resolves after a good night’s sleep).

And away we went with treatment, creating pathways from the groin area up to her axillas (armpits) and constantly clearing fluid upwards towards them.  I used the laser around the scar and medial knee where Helen says most of her issues are, then turned her over and worked the back of her thigh.  Interestingly, the skin on her leg was soft throughout until I got half way down the back of her thigh where there was almost a line (not one that you could see, but one I could feel) where the texture changed to a slightly more “spongy” texture.  Interesting.  All the while I was clearing fluid up to her axilla.  All too quickly we were out of time.

As Helen left she asked “so, who’ll write the blog, you or me?”.  You guessed it – me.  We have another appointment booked for next week so I’ll find out then how she felt after the treatment, although I’m sure she’ll post a comment on here before too long.

Thank you Helen for the opportunity to work with you and to be able to blog about it afterwards.