Archives for posts with tag: fibrosis

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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

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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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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 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

I want to introduce you to M.  He’s not my typical client, not that I really have those but you know what I mean.  Until May 2009 he was your typical (there’s that word again), active male, working hard and enjoying being outdoors and active.

He was up a ladder clearing out some guttering and he fell, landing on concrete, resulting in two months in a coma at Royal North Shore Hospital and then a few more months in recuperation at Ryde Hospital, until December.  Since then he’s been getting himself back – he’s had to learn to walk again and attends an exercise program called Walk On, three times a week.  He still walks with crutches but the Walk On guys have him walking short distances unaided – they work him HARD and he comes in with very sore muscles every week.  He sees physios and swims and is doing whatever possible to help himself.

M came to see me at the end of October last year because he had some swelling and pain in his lower leg for three weeks and after a clear Doppler his GP suggested some lymphatic drainage might help and sent him to see me.  That in itself is a minor miracle, a GP sending me a client, but I have to commend this particular GP, she’s sent me two clients recently – progress.

I did the usual upper body MLD clearing and focused on his left leg.  M was very sensitive to touch and had (and still has to a lesser degree) jerking responses, even when clearing his thigh his lower limb would be twitching, or sometimes his right leg.  I have to say that I did drop my lecturer a note about that and she assured me that this happens sometimes, it’s the increase in lymphatic flow making everything work a bit better and that includes nerves firing.  At the end of that first treatment he was amazed at the reduction in swelling.

He’s been coming regularly and we’ve added some laser to the treatment as the area around his lateral ankle is a bit firm and that has helped break down some of the fibrosis.  What we’ve been doing of late is adding ten minutes of remedial massage to his quads because he is worked so hard at Walk On that his muscles are sore.  Our treatments change according to what he needs on the day but it’s great to have a toolbox from which to choose.

Over the time we’ve had many discussions and I’m amazed by some of the things M still does, in spite of his limitations.  He related the story of being helped into the ocean while on holiday and a guy swimming out to him to tell him he shouldn’t swim because of the sharks – his response “I’m going to swim from one beach to the other and he should get out if he was worried about sharks”.  Well, the guy got out and M did his swim.

Or skiing again, using a special ski chair and going down so fast and doing such a sharp turn he broke one of the skis and had to get it repaired.  He’s given me some photos of him skiing with his instructor – pretty amazing huh.

IMG_0049 IMG_0052 IMG_0046

The moral of the story is, don’t be limited by what you think your body can and can’t do, anything’s possible.

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!

Over the last few weeks I’be been weighing up the pros and cons of a couple pieces of equipment and I think I’ve made my decision as to which one to purchase for my clinic.

The first is an L-dex machine.  I’d heard of these machines before and when I went to the lymphoedema conference in March they talked about how useful they were.  The L-dex measures the amount of fluid in the interstitial tissue and gives a good indication of whether lymphoedema is present in unilateral limbs.  It’s more useful as a guage in the early stages of lymphoedema as once the condition has progressed and the tissue has become fibrotic (hard) then the fluid content is less so your reading may actually be low, even though you can visibly see the swelling.  A normal reading is anywhere between -10 and 10.  Best case is to take a reading before surgery so you can compare straight away because even if your reading is say 8 after surgery, if it was -9 before then that is a big change (anything over a ten point change is an indication of lymphoedema being present).  All very technical.  You can read a bit more here http://international.l-dex.com/what-is-l-dex/.

I decided to investigate costs and found that there was a special offer on and I had the rep come in and demonstrate.  Well, she didn’t actually demonstrate in the end, she spoke about it and left the machine with me to trial for a week and a half. And that I did.  Two of my clients had had readings taken elsewhere recently and so it was really useful/interesting to be able to compare.  I have to say, the readings I took were quite different to the ones they had just had and I began to question the reliability of the machine.  Readings should be taken on the same machine and around the same time of day for consistency.  Hmm.  Not fully convinced.

But.  One of the two clients who had readings previously said that initially she was excited because she thought I had bought a laser.  So we talked about the benifits of L-dex versus laser.  With a laser you can actually treat areas of fibrosis and lymphatic cording.  Normally when I treat cording I have to do it manually, literally trying to snap the cord with stretching techniques and to this day I haven’t heard the “snap” that accompanies the breaking of the cord (nor do I want to, the thought scares the bejeebers out of me).  A laser breaks up the cording faster and easier and with less discomfort.

ImageLymphatic cording, photo courtesy cancerat35.blogspot.com

So.  Here was my thought process.  The L-dex – useful as a measurement tool and the medicos will like having an official looking print out with a number on it.  The laser – I can actually treat clients with it and they walk out feeling better.  A bit of a no-brainer really don’t you think?

So I’ve just emailed the suppliers to see when I can get one.  I’m getting the LTU-904.

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photo courtesy Rian Corp

Read more about it here http://www.riancorp.com/Products/low-level-laser-therapy-lllt.html.

I’d love to hear about your experiences with either piece of equipment and whether you think my decision is the right one.