Lipedema Patient Raises Awareness

Thank you Catherine for helping to build awareness of Lymphatic disorders… And to LRF for all your work..

Lymphatic Education & Research Network

Lymphatic Research Foundation Executive Director Bill Repicci met with Catherine Seo, a professor and documentary film-maker, last week to be interviewed on the progress being made in lymphatic research and in building awareness for lymphatic diseases.

Catherine was diagnosed with lipedema, a chronic, hereditary, and genetic disorder of the adipose tissue generally affecting the legs and, in some cases, the upper arms. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema.

While lipedema predominantly affects women, there are a few cases in men. Believed to be caused or exacerbated by hormonal disturbance, lipedema usually is triggered at puberty, but can begin or worsen during or after pregnancy, at peri-menopause, or following gynecological surgery or any surgery with anesthesia. Estimates of the incidence of lipedema vary…

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What is happening?

Macquarie University Hospital

Macquarie University Hospital (Photo credit: Wikipedia)

Last week I signed the papers that makes me officially part of the research into Lymphoedema at Macquarie University Hospital, Sydney, Australia. The Advanced Lymphoedema Assessment Clinic at Macquarie University has been granted approval by its ethics committee to conduct research into the causes and treatment of Lymphoedema. One of the main focuses will be to understand why some people develop Lymphoedema and others do not, also why in some cases the fluid turns to fat over time. The Chief investigator is Professor John Boyages of Macquarie University Cancer Institute.

I have been given three different “Participant Information Statements” to read, each requiring my signature to use my details and to gather information for this research. The first is to use information already gathered pre surgery. This includes pre surgery measurements, L-Dex reading, range of motion, photos of limb, MRI and Lymphoscintigram. These tests will then be repeated after surgery at 6, 12, 18 and 24 months. Blood will also be taken every 6 months to test for “markers” such as Protein in the blood to see if there are changes as treatment progresses. All this creates a record of results after surgery. My second signature was required to take part in these ongoing tests, follow-up and for results to be used for “Lymphoedema Medical Research”. The purpose of the study is to better understand the underlying biological causes of Lymphoedema, to improve and better understand of ways to treat Lymphoedema.

My third signature was required for the last part which is Genetic Testing. I was not sure about this, as I did not want to know the results, but I was able to request that I not be given these, but they can use them for their studies. To be part of this study blood will be taken and tested for its DNA structure. The genetic testing will be used to see if there is a genetic profile which makes one predisposed to Lymphoedema. They will compare various people, those with Primary Lymphoedema, Secondary and those with no Lymphoedema. In this way they hope to be able to assess people’s risk factors, if there proves to be a pattern in the Genetic tests. That way when nodes are removed someone who is at risk could be more aware and protect their limb before Lymphoedema starts.

The research will include those having Liposuction (the liposuction is not the same as that used for slimming as the lymphatics are avoided and thinner canulars used, it is a specialist treatment) and Lymph Node Transfers of both legs and arms. For the genetic testing people without Lymphoedema will also be used for comparison.

This is invaluable research which has been missing, even though these procedures have been done for some time overseas, there has not been good follow-up of results or research. The genetic testing will hopefully tell us who is at risk of Lymphoedema and therefore lead to a minimising of vulnerability. All research is welcome as it shines a light on the difficulties of living with Lymphoedma…. I will keep you posted on progress as my 6 month tests will be in September.  I hope that at the end of the study there will be some interesting and constructive conclusions but this will be in a few years time, to allow follow-up over a two-year period.

English: Macquarie University sign

English: Macquarie University sign (Photo credit: Wikipedia)

Research to lessen likelihood of donor site LE

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

One if the fears associated with Lymph node Transfer is that patients may get Lymphoedema in the area of donor site. This research is interesting in addressing that problem for the future, by using techniques to map the lymphatics of the donor site and ensuring no nodes are removed which drain a limb. Thanks to my “Reasearch Assistant” in Belgium who keeps me up to date with the latest articles. I am sure we will see more of this work from Dr Dayan in New York.

Vascularized Thoracodorsal and Lateral Thoracic Artery-Based Lymph Node Transfer for the Treatment of Lymphedema: Technique and Case Series
Erez Dayan, M.D., Mark L. Smith, M.D., Mark Sultan, M.D., William Samson, M.D., Joseph H. Dayan, M.D..
Beth Israel Medical Center, New York, NY, USA.


BACKGROUND:
Vascularized groin lymph node transfer has been described as a successful treatment for lymphedema. However, patients with bilateral lower extremity lymphedema may not be candidates, and the short pedicle may not be ideal if the recipient site requires greater pedicle length. Transfer of axillary lymph nodes draining the chest wall has been performed but there is no literature on the technical details of this procedure. We present a case series and technique for vascularized axillary lymph node transfer using reverse lymphatic mapping to minimize the risk of lymphedema in the upper extremity.
METHODS:
Four patients underwent axillary lymph node transfer between October 2011 and June 2012: two patients with lower extremity lymphedema and 2 with upper extremity lymphedema. Reverse lymphatic mapping using technetium injection into the upper extremity and indocyanine green into the chest wall was used to avoid harvesting lymph nodes draining the upper limb and to facilitate chest wall lymph node harvest. Donor lymph nodes were harvested based on the thoracodorsal artery in 2 cases and based on both the thoracodorsal and lateral thoracic arteries in the remaining 2 cases. A thoracodorsal artery perforator skin paddle was included in 3 of the 4 cases. Intravenous indocyanine green and SPY evaluation was used to confirm perfusion of lymph nodes following anastomosis. Video and technical details will be illustrated.
RESULTS:
All patients had viable free flap transfers with satisfactory perfusion of the lymph nodes confirmed by intraoperative SPY evaluation. There were no postoperative complications and no observed lymphedema in the limb adjacent to the lymph node harvest donor site. Our first patient experienced a significant reduction in upper extremity limb volume as illustrated in the attached figures. Long-term follow-up on volumetric data and quality of life will be provided at the time of the meeting with a follow-up range of 7 – 15 months.
CONCLUSIONS:
Axillary lymph node transfer may be a useful alternative to groin lymph nodes and provides a long pedicle which may be preferable in a severely radiated or hostile recipient environment.

Lymphatics of the axillary region

Lymphatics of the axillary region (Photo credit: Wikipedia)

Meeting Helen – My Lymph Node Transplant

Yesterday was my first visit to Lisa for Vodder therapy and the use of her laser on the scar tissue in my knee… How lovely to meet someone face to face that you have previously met via blogging!! The treatment went well and I will return next week for another session prior to tests the following week.. At the end I said “Who is going to write the blog”. Lisa got the short straw as I feel a bit flat writing about myself at this stage!! Anyway I get to reblog and share with all of you and say a big thank you to Lisa for seeing me and becoming part of my journey with this Lymph Node Transplant/transfer…. Thanks
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Lisa Higgins - massage across the table

I’ve been following Helen’s blog (https://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…

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The Big Day

Reblogging this as I reminder of where and when my surgery began…. Five months later and feeling more my normal self lower leg going well but knee still a problem … Off today for some MLD and laser treatment on scar tissue in knee …. Yes I still have Lymphoedema but maybe easier to manage… Tests in September should show progress I hope!! Will keep you posted…
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My Lymph Node Transplant

For most women the ‘Big Day’ refers to the one imagined by pimpled teenagers at the back of double math. You know the one. The one with the white gown, man of dreams and promise of happily ever after. For my mother, the ‘Big Day’ now refers to the one imagined by those living with Lymphoedema. You know the one. The one with white hospital gown, doctor of dreams and promise of ‘just as good as before’.

Today was that very day.

At 6am the alarm grabbed me by the collar and yanked me out of restful slumber. The screen flashed ‘MUM’S SURGERY’. I dialed her number with zombie precision thinking it would be really nice to catch her right before her surgery to giver her my love and forgetting that the use of mobile devices is generally frowned upon in the hospital setting. I got the answering service. “Hi…

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I’m so progressive (medically, that is)

I would like to introduce you to this blog by Britta who has Primary Lymphedema… By sharing we help to build awareness of this condition… Please give her your support.. Thanks

Lymphedema Diary by Britta Vander Linden

When the medical professionals say that lymphedema is a progressive disease, they aren’t kidding.  In the 15 years that I’ve had the condition, the development of my lymphedema can be tracked by the compression garments I have worn to manage it.

Compression garments are stockings or sleeves or some other type of clothing that provide gradual compression that pushes the lymphatic fluid towards the heart (meaning the garment is tightest at the bottom of the limb, i.e. the ankle or wrist,and loosest at the top of the limb).

Some lymphedema patients can’t fit into compression stockings due to the severity of their swelling.  I don’t know how they can function or bear the pain.  For myself, I cannot remain in a standing position for more than a few minutes without my stockings on before I start feeling discomfort.  Within a matter of hours swelling would follow and my legs would be…

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A Quiet few days

I have just returned from spending the last four days in the Blue Mountains, two hours from Sydney. No TV, radio, telephone or Internet access!! Peace and quiet, clear blue skies and crisp fresh air. The first part was spent visiting a friend who makes natural perfumes, Aromatique Essentials… They are created for each individual… Beautiful.

We also spent time visiting her five miniature horses down in the valley, they are from 29 inches high to 34 inches, just so cute and fluffy with their winter coats and collecting water from a natural spring.

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Julie with her babies..

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Could there be a better day..

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Too cute..

Over the weekend I attended a workshop about “Counselling Aboriginals with Cancer.” We learnt about respecting and understanding their cultural values. Sadly we learnt that many Aboriginals do not seek help with cancer until it is in the advanced stages. They have a fear of doctors and hospitals so leave things until they are quite ill. This is more those living in rural areas, as like everything there are many diverse views and changes within the Aboriginal communities. There are now special programs in place in the hope of encouraging them to seek help sooner.

This is an Australian Aboriginal Proverb

We are all visitors to this time and place,
We are just passing through.
Our purpose here is to observe,
To learn, to grow, to love
And then return home.

Aboriginal Face Mask

Aboriginal Face Mask (Photo credit: Michael Loke)

New research ideas…

I am always interested in any new research which is working to find a cure or treatment for lymphedema. This is an interesting article which moves in a totally different direction to create a type of massage sleeve and maybe in the future a stocking.. Thanks to the University of Wollongong  NSW Australia.

News in Science ABC

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Artificial muscles to ease lymphoedema
Monday, 6 May 2013
By Dani Cooper
ABC

University of Wollongong
Sleeves of material woven from artificial muscles that massage the arm to combat lymphoedema in breast cancer patients are nearing a trial phase.The design concepts are one of the promising developments to emerge from the University of Wollongong’s research into artificial muscles.It is hoped the so-called lymph sleeve will help the third of breast cancer patients that develop lymphoedema or swelling of the arm.

Professor Julie Steele, at Wollongong’s Biomechanic Research Laboratory, says the team is now working through the ethics process ahead of starting trials.

“At the moment we are working through a number of concepts and how to make it wearable,” she says.”We will be trialling initial concepts on people [but] we still have a long way to go.”

The work, funded by the National Breast Cancer Foundation, aims to relieve lympoedema symptoms in breast cancer patients. Lymphoedema is the build-up of lymphatic fluids in the arms and legs that can lead to swelling, heaviness, pain and discomfort. It is incurable but can be treated through a range of therapies such as massage, laser, medication and pneumatic pumps.

Steele says the work still needs to better understand how current treatments relieve lymphoedema, such as exactly how much force is applied to the arm during massage.The benefit of the sleeve is that it will be portable, says Steele, adding that current therapies available for lymphoedema cannot be carried around. “In some cases you have a huge hydraulic machine where you have to be stuck to a power point,” she says.

Colleague Dr Bridget Munro says lymphoedema is a side-effect of breast cancer treatments such as mastectomy so people with the condition are already dealing with body image issues from their treatment.”These patients are already very conscious of their bodies, so we want to develop something that is not visible and they can wear.”

Steele and Munro have been collaborating with Professor Geoff Spinks and his team at the Intelligent Polymer Research Institute. Spinks says the innovative material fibres contain a nano-scale “motor” that can be activated through heat or an electrochemical reaction.

“It all comes down to getting pressure in the sleeve and that has to come from some mechanically active part,” says Spinks.”The advance we want to exploit is based on fibre materials that can contract … it is still to be established yet whether we can take individual fibres and weave them into fabric that will look and feel like normal fabric, but some of those fibres will contract.”
Until recently, one of the bottlenecks in utilising the technology has been in making enough fibres to weave into material, says Spinks. However, the team have produced small swatches of fabric and are confident they can produce larger pieces.

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Steps to the future