Archives for posts with tag: diet

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

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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!).

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