Archives for posts with tag: lipoedema

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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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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I’m just back from a week in Darwin in the Northern Territory of Australia having attended the 2016 Asia Pacific Lymphology Conference.  I’ve made a very short video giving a few highlights for you to view  here.  I’ll be working on a few blog posts over the coming weeks to talk about what I learnt at the Conference.  I’m still processing all the information – my brain hurts!

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Those amazing ladies of LASS are at it again.  This time they have managed to get a segment on the TV show “Today Tonight” – watch it here.  As well as a piece in the Bendigo Advertiser – read it here.  And yet another article in “That’s Life” magazine, couldn’t find a link to that one but have a photo grab …

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They are a non-stop rollercoaster working to bring awareness of lipoedema to the general public.  They have had so many new members join, particularly since the Today Tonight segment and they are thrilled to be able to reach so many.

LASS has decided to become a charity so that they can do more to help women with the condition and raise even more awareness.  But as they are not funded in any way, they can’t afford the legal fees to set the charity up.  So they have set up a crowdfunding page on Chuffed.com to try and raise funds to achieve this.  Please, please, if you can donate to this amazing group of women so they can help others.  Click here to be taken to their donation page.

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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.

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One of the things that my great friend Angela (who I’m now sharing a clinic with) and I have wanted to do for a long time is create a collaborative practice where clients receive care from a number of therapists to help them realise their full potential quicker. It is very rare that one therapist can attend to all the needs of a client – we are just too multi-demential as clients for that to work effectively.

 

Lisa and Angela's cards

Lisa and Angela’s cards

Lisa and Angela, door sign

Lisa and Angela, door sign

We had tried to do this in our last practice … four of us set up together and for various reasons (mostly administrative) two were not able to continue past a few months. But we still referred clients to them in their new practices.

We also tried to do this in our main clinics (we both worked in two), setting up a network of therapists to refer to – homeopaths, naturopaths, osteopaths, acupuncturists, nutritionists, you name it. And of course we referred to each other.

Angela sent an email out to all the health practitioners in our building and another building opposite that has a new practice and we have held a couple meetings so far. The first was to introduce ourselves, our passions and our therapies.

After the first meeting we decided a good idea would be to meet every six weeks or so to discuss a particular condition and how each of us would think about treating it if a client presented with it.

Well, I’m not shy. I put forward the first topic – lipoedema. As you know, I’m on a bit of a mission to educate the world (I’m thinking big) about this condition and I thought this was a really good place to start.

At the meeting we had a couple homeopaths, a couple naturopaths/herbalists, a kinesiologist, a dietician and myself. I thought that was a good broad base of knowledge and experience.

Discussion was spirited of course, which was fantastic. The dietician had come prepared with printed information on lipoedema, but it wasn’t a condition she had worked with so she was interested to hear what we had to say.

There was talk of which organs might be involved, what hormones, what vitamins were deficient, what remedies might be used. There was nothing in the homeopathic listing of conditions – the closest they could get was elephantiasis, not any where near but at least it was dealing with abnormal swelling in the legs. It was exciting seeing everyone giving their opinions and what they would look at. But still, we were no closer to finding out what common cause there might be – each of my clients present with totally different co-morbidities so it is hard to say what comes first, the lipoedema or for example, the fibromyalgia, or the celiac disease (just two picked at random).

Angela and I left the meeting quite excited – we had decided on a plan of action. We are going to run a study of our own to try and find a common link.

So. When my lippy ladies come in, if of course it coincides with Angela having a slot in her schedule, Angela will come into the session and test them using kinesiology, focussing on a few basic questions:

1. Are their neurotransmitters strong?
2. Which organs
3. Which hormones
4. Which cranial bones
5. Which homeopathic remedies
6. A general “other”
7. Priority for treatment

These may seem like odd questions, but kinesiology can be very specific, so by asking yes/no questions, Angela can find out which of the above are an issue.

I’ll try and give you a real example – my first client after the meeting was more than happy to be our first guinea pig. Her neurotransmitters were strong; her pancreas was weak; the hormone insulin came up; her sphenoid (a cranial bone) needed to be balanced; and two homeopathics (the homeopath next door brought six over for us to test straight away, based on how homeopathy would treat the condition) tested positive – thyroidinum 4 and pituitary ant 6; and because of all of the above, Angela did a “pre-diabetic” test which was positive. She then tested for my treatment that session what was the priority – MLD or balancing the sphenoid bone? And some craniosacral therapy to balance the sphenoid was what I needed to do first.

I’m sure our questions will evolve as we do more, but it was a place to start given the discussion we had that day with the other therapists. Wouldn’t it be amazing if we could find some sort of link which can help women get diagnosed earlier or even, heaven forbid, find some sort of way to turn off the gene expression for lipoedema! Nothing wrong in thinking big right!

We’re going to be discussing autism in our next get-together. I bet that will be another full-on discussion.

Where to begin.  Well, let’s just say there is no way I’m going to cover even a fraction of what I saw/heard at the conference, there was just so much content. I’ve counted that there were 39 presentations in three days, one of those was broken into case studies with different presenters being allocated 2 minutes (in one hour there were 12 presentations)! So I’ll go for the stand-out highlights for me and I’ll do a few different posts over the next week or so to not bombard you with too much info.

I attended three workshops – we got to choose those when we registered and two of them I found fantastic.  The first was on Differential Diagnosis of Lymphoedema, presented by my favourite, Prof Neil Piller of Flinders University, and Vaughan Keeley of the Royal Derby Hospital, UK.  Was really pleased that they focussed on lipoedema and the difficulties of diagnosing some cases.

I found the presentations by Dr Hiroo Suami of the University of Texas MD Anderson Cancer Centre to be very interesting and amazingly upbeat and humourous (quite difficult I reckon when showing slides of cadavers).  He has pioneered The Lymphosome Concept, a way of “visualising the lymphatic system using hydrogen peroxide and a radio-opaque medium injected into cadavers then using radiographs and three-dimensional computed tomography scans to see how and where lymphatic fluid flows, which vessels, nodes and territories it uses.  Fascinating.  He also talked about surgical treatment for lymphoedema, including creating new channels to increase the capacity to transport lymph fluid; liposuction or lymphovenous shunting, lymphatic graft and vascularised lymph node transfer.

One of the most interesting things I heard was in one of the “breakaway sessions” of four talks.  It was by another of my favourite presenters, Alex Munnoch, of Ninewells Hospital in the UK.  He noted that surgical staff who perform long surgeries often complain of leg discomfort and oedema, so they set up a small trial to see whether T.E.D. stockings (those beautiful white stockings you are given when you’ve had some surgery in hospital) have an effect on the level of oedema.  One leg was randomised (by the flipping of a coin, very scientific criteria indeed!) to wear a T.E.D. stocking and the control leg (the other side) would receive no compression at all.  Fluid levels were measured before and after the surgeries.  40 legs were studied in all with an average operating time of 9.5 hours.  Results?  T.E.D. stockings were found to reduce the increase of fluid and interestingly, when they tried the experiment using compression stockings instead of T.E.D. stockings the degree of oedema increased!  What!! That was a surprise indeed.  He conceded that such a small study was perhaps not conclusive and more study was definitely warranted.

On the first day there I also attended presentations on head and neck lymphoedema management; lymphoedema and osteopathic care; reducing oedema after lower limb cellulitis; wounds and lymphoedema; and case study presentations on things such as; TRAM flap reconstruction; layered compression garments; liposuction; bioimpedance spectroscopy; kineseotape post radiotherapy; yellow nail syndrome …. the list goes on.

My head was swimming by the end of the day, that’s for sure.

If you’d like more info on any of the topics I mentioned, please leave me a comment and I’ll add some more infomation.  To access more information about lymphoedema and it’s treatment, visit the ALA website here.

But it wasn’t all hard work – here’s a photo from the closing ceremony of two of my favourites … Prof Piller and Alex Nunnoch, good on them for getting into the spirit of things!

 

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Prof Neil Piller and Alex Munnoch, letting their hair down

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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?