LymphUnited eNewsletter

Volume 3
April 2022

LymphUnited eNewsletter

Volume 3
April 2022

Volume 3 – April 2022

Welcome to our third LymphUnited eNewsletter, which includes a variety of articles that share experiences and we hope help you to live better with lymphoedema.

I share my experience in assisting St George’s Hospital with their lymphoedema research by participating in using their latest technological advancements.

Jane Wigg from our panel of experts, explains the importance of Self-Lymphatic Drainage (SLD) and provides our members with an exclusive offer to access her videos on how to do SLD properly (something I’m not that good at myself!).

After much encouragement, I will be recording some videos about self-managing lymphoedema, plus inform you about my latest project – The Lymphoedema United Charity Golf Day 2022.

We hope you find this interesting and informative. Most importantly, we hope there will be something that you find beneficial to improve your quality of life.

Ultimately, this newsletter is for your benefit. Therefore, I would welcome your feedback or any requests you have for future content. Contact me at Hello@lymphunited.com.

“St George’s Needs You!” by Matt Hazledine

“It gave me hope that a solution may have presented itself thanks to participating in the lymphoedema research program and using the latest technology.”

Professor Peter Mortimer and I seem to have an unspoken understanding. If one of us asks the other for a favour, the answer, so far, has always been yes. I am very privileged and never take our productive and constructive relationship for granted.

Before Christmas I was asked to consider participating in the latest research being undertaken by Prof Mortimer and Michael Mills from the Lymphoedema Research Team at St George’s University of London. This would include Indocyanine Green (ICG) Fluoroscopic Imaging and then Magnetic Resonance Imaging (MRI). I had experienced both of these on several occasions before, so what was different about them this time?

Attached to his email were imaging information sheets explaining these investigations were with contrast agents (not radioactive) to investigate lymphatic vessels in both legs. The MRI and ICG investigations are similar in that a non-radioactive contrast would be injected into my feet which would help them see the lymphatics. At this stage, I was intrigued and of course had nothing to lose, plus it might provide some new information about how I could further reduce the size of my leg.

I share this with you now for a couple of reasons as you will soon see. The main one being that St George’s are still seeking people with lymphoedema and their spouses/friends without lymphoedema to participate in their research. Contact details follow at the end, if you are interested.

Mike Mills from the St George’s Lymphoedema Research Team summarises their main objectives:-

“With regards our lymphoedema research at St George’s, the overall goal of our research is two-fold: to better understand the mechanisms underlying the lymphoedema (i.e. what is happening to lead to the fluid accumulation and swelling), and secondly to improve our ability to do something called ‘phenotyping’, which essentially means characterising the features of the lymphoedema. We want to do the latter so we can group people with similar lymphoedema features in the hope of targeting further research into the causes and mechanisms of that particular ‘phenotype’. We are especially interested in doing this to guide research investigating how an individual’s genetics may be linked to their lymphoedema. Once we have more of an understanding of the how’s and why’s we can use that information to really hone-in on potential treatment options down the line.

Our imaging research, which involves the ICG lymphography and MRI which you underwent, are one arm of our research and tell us about what is happing on the scale of the whole limb or individual vessels, while additional studies are also investigating lymphoedema at the levels of the cells and genes.”

I like to know more about what I’m getting myself into, so I emailed Mike who explained “Each imaging session will take a couple of hours. For the ICG imaging we inject a fluorescent dye which allows us to see your lymphatics and then use a handheld camera to create the images so will be with you during the hour or so of imaging. For the MRI you’ll be in the MRI room alone for the first 20mins of imaging before we come in to inject a different agent which shows up your lymphatics in the MRI. Following those injections, we carry on imaging for another ~45 minutes or so.” Well that all sounded completely acceptable and it’s rare nowadays to spend some quality time with Prof Mortimer, so what wasn’t to like!

The day came and I arrived full of enthusiasm to do my bit for lymphoedema research. Mike was there to greet me and completed the appropriate paperwork before I took off my trousers and waited on the couch for Prof Mortimer to arrive (that sounds like a scene from Carry On Doctor doesn’t it?!).  After a quick catch-up, Prof administered the injections in my good right leg first, so they had something to compare my impaired left leg to shortly. The injections were between the toes and also at selected points on the top of the foot, which stung for a bit, but not for long. We then waited in the dark for a couple of minutes until Mike lowered a camera on a large overhanging frame millimetres from the surface of my ankle. On the monitor for all of us to see was the illuminous trace of the dye working its way up my healthy lymphatic system, which was fascinating to watch. Mike then traced the journey of the dye all up my leg to my thigh. All looked good and it set the benchmark for the left leg to aspire to. Prof repeated the same injections in my left foot and we waited for the dye to begin its route. It wasn’t too long before Prof and Mike were making comments like “mmmm, that’s interesting, go back a bit, left a bit, stop there, take a photo of that bit” you get the picture, I’m sure.

As you will see from the images below, there were clear lymphatic channels around the ankle which then turned into a mass of star-bursting in the lower leg. This was the area most effected by the severe episode of cellulitis that I’d had in 2011 that led to my lymphoedema. This was no surprise to either of us as we had seen this before in previous lymphoscintigrams I’d had over the years. However, Prof identified what looked like working channels above the knee on the outside of the thigh which then continued carrying the dye up to my groin area. This was new news to both of us, as LVA surgery had been ruled out before as it was thought the channels above the knee weren’t robust enough. Now, Prof Mortimer exclaimed that LVA may be a possibility and for us to explore this option further with the team at the Oxford Lymphoedema Practice. (That’s a story for another time.) It gave me hope that a solution may have presented itself thanks to participating in this latest lymphoedema research program and using the latest technology.

With renewed hope, I then had a light lunch before being taken down for an MRI with a difference. After 20 minutes of the continuous mechanical dalek-like noises being made inches from my body, I was then injected in-between my toes on both feet once again by Prof Mortimer, before he bid me farewell and left me for a further 45 minutes of complete motionless isolation. I think I actually fell asleep this time! There were no instant results to report on this occasion, but I am grateful to Mike for sending me the images and comments, which I am very happy to share with you, on request, in case it inspires you to engage in the research too.

If you are interested in participating in this research, please contact Mike Mills directly for further information mmills@sgul.ac.uk or michael.mills2@nhs.net

Self-Lymphatic Drainage – Why do it? and ‘How to Videos’ Exclusive Member’s Offer!

By Jane Wigg MSc, RGN, dip. LTA Lead Trainer & LymphVision Nurse Consultant, Director & Founder.

As a specialist in lymphatic drainage, Jane Wigg from our ‘Meet the Experts’ panel was the perfect person for me to seek information and help on Self-Lymphatic Drainage (SLD) – an important part of our lymphoedema self-management routine.

Personally, I don’t know if I’m doing it right or not and sometimes, I don’t do it at all, which isn’t very compliant! So, I asked Jane, why is SLD important and how do I do it correctly?

Let’s start with, what is Self-Lymphatic Drainage?

Self lymphatic drainage or SLD is said to be an essential part of lymphoedema management, yet my stance is that if you can get away without having to do it, that must be a winner. Self lymphatic drainage is where you apply Manual lymphatic drainage (MLD) yourself, or sometimes by a partner, friend or family member. Manual lymphatic drainage comes in all varieties but what is important is to carry it out as well as you can, to get the best results- that means as good as your therapist or me, as a trainer!

Why is SLD important?

Self-drainage is important, and there are general principles to understand, like ‘keep emptying nodes’- the more you empty, the more they can be filled with lymph ‘below’. Remembering that we naturally empty nodes with walking and movement so if we reduce this and we start to swell, it helps us understand why.

NB:- For the links to Jane’s ‘How to do SLD’ videos with exclusive offer for our members, read on!

Often those living with lymphoedema are discharged from clinics on a regimen of what is called maintenance therapy, consisting of skin care, exercise, compression and SLD. All of these things are very important, but I firmly believe that most people want to see an improvement in their swelling rather than to maintain it. Certainly, where SLD is concerned we want to achieve a reduction in the swelling, and this might mean changing what you do and how often you do it! The frequency of SLD might need to be increased to 4-6 times per day. I suggest you imagine you have a ‘pot’ of fluid, for example 500mls and when you carry out your SLD you remove 50mls, then it comes back throughout the day, and you remove it again in the evening… only to return overnight! If you increase the frequency of your SLD, you are much more likely to reduce the oedema, reducing the long-term involvement later. Of course, all lymphoedemas are different and, therefore, the filtration or filling of your lymphoedema will be different to someone else’s. So, they may need SLD 4 times a day to manage their lymphoedema and you may need it just twice a month for top up.

Because of this change in how we think about SLD, we now prefer to call SLD ‘Movement and Drainage’

We now also understand that the lymphatic system will drain in its own unique way and that we have little influence over it. We can, however, force the fluid to where it drains normally, in an attempt to improve that drainage. We have learnt that one area of focus that is important is the emptying of lymph nodes. Generally, lymph nodes only empty if you are moving, especially moving the areas the nodes are in! Remember that your nodes are in places that naturally empty with movement – so as you move your arms and legs, the more the nodes empty and therefore the more drainage is possible. When you don’t move, or have a static job, the nodes do not empty, and you get a backlog of fluid, maintaining (or not improving) the swelling.

With ‘Movement and Drainage’, “the more you drain, the more you gain!” emptying the nodes frequently and often. If you can do this, you are usually onto a winner and gain some improvement.

How do I do SLD correctly?

Node emptying is usually done with a soft sponge ball which can be purchased here. We will also gift you free SLD leaflet when you purchase your balls, just put the code LU2022 followed by where your lymphoedema is eg arm/leg/breast/head (in the ‘therapist box’) to make sure we send the right leaflet.

Get into the habit of emptying your nodes several times throughout the day, particularly if you are not very active or have an inactive job. It is not as complicated as it sounds – simply take a soft sponge ball or even a clean ball of socks, pop it in the nodal area that is appropriate for you, behind the knee, in your groin, under your armpit, (Figures 2–4 below) then move the limb to squeeze the ball, do this 4-5 times.

Instruction Videos & Exclusive Offer, plus additional resources

To assist further, please look at our online videos to help bet the best out of your MLD. Developed by the lymphoedema Training Academy, using simplified FG-MLD® or ‘Fill & Flush’ technique. And remember ‘No Drain- No Gain!’

As an exclusive offer to members of Lymphoedema United, Jane has reduced the price per video by 10% to £4.50, which is tremendous value! To make the process as easy as possible, the video links below are automatically priced at the reduced rate, so no members discount code is required at checkout. Simple!

Just use the links below:

How to Perform Self Lymphatic Drainage – Lower Limb

How to Perform Self Lymphatic Drainage – Upper Limb

Also take a look at chapter 15 in Matt’s book, ‘How to live better with lymphoedema’, for further information about SLD and the MLD technique that we have developed called Fluoroscopy Guided MLD (FG-MLD®) or ‘Fill&Flush’.

You can see how to carry out this movement with drainage technique by visiting our Facebook page Lymphoedema Training Academy @lymphtraining and you can find a therapist who has had training in the technique by visiting our website www.lymph.org.uk

We are delighted that Jane is a member of the ‘Meet the Experts’ panel of our website. Please visit her page and log in to the member’s section for more information.

Free video – Balance with Babz, online chair-based lymphatic yoga session

On 26th March 2022, Lymphoedema United teamed up with Babz Jackson, a lymphoedema therapist and yoga instructor from Boston USA, to bring you a FREE online chair-based lymphatic yoga session, live on Facebook. We were joined by willing participants from the UK, USA, Dubai, Israel, Zimbabwe….

We recorded the video, which can be viewed free of charge on our website. If you are interested in finding out more about online lymphatic yoga sessions, you can contact Babz directly via email: Balance With Babz Yoga balancewithbabz@gmail.com

https://lymphoedemaunited.com/information/videos/

What do you want to see from Lymphoedema United?

During the last seven months we have made a real effort to promote the launch of the Lymphoedema United website and my book How to Live Better with Lymphoedema – Meet the Experts. Although we have received some wonderful and rewarding feedback, we always want to strive to do better and deliver what our members are most in need of.

Please feel free to contact me with your feedback, ideas and suggestions as I believe we will be a much stronger voice as a united lymphoedema community. hello@lymphunited.com

You will have noticed I’m sure, that we now have 14 suppliers, with more joining us soon, all providing products that help to improve our quality of life when living with lymphoedema. I am aiming to introduce lifestyle and wellbeing services in the near future. We are thrilled that our seventh member’s experience will be added in April, with several more promised to follow soon. Our panel of experts has grown to ten, with another well-known professional joining in a couple of months.

After a successful campaign to support Lymphoedema Awareness Week and World Lymphoedema Day, we ventured into the world of videos of the home-made kind, nothing too grand! The response was extremely encouraging but one member sent me a long email, with kind words and also some specific requests from what they wanted to see from Lymphoedema United and, surprisingly, from me personally. More about my experiences of living with lymphoedema and tips! Although I bared my soul in the book, I did accept that I perhaps should be sharing more with you on the website.

Do you agree, I wonder?

Please send me your honest feedback and suggestions, I can take it! This website is for you, after all!

Here’s what we have planned…

Videos

I will be pointing the iphone at myself and pressing record, to produce a series of videos covering my journey with lymphoedema including information and tips on self-management, self-care, physical and mental wellbeing, treatments, therapies and surgeries and a few other subjects along the way. All of my content is based on my personal experiences and remember, I am only a ‘patient’ and not a qualified healthcare professional!

If you have any subjects that you would like me to cover, then please let me know via email at hello@lymphunited.com

Q&A

I am often contacted either via the website, email or social media platforms with questions from people like me, trying to live better with lymphoedema. The questions are varied and of course, some I cannot answer as professional medical advice is required. However, in those instances, I can often signpost the person to the appropriate expert, organisation or company – usually on my website.
If you have any questions that you would like me to try and answer, or try and find the answer to, then please send them via email to hello@lymphunited.com

Please be patient and if I receive similar questions, I may record a video or add them to the Frequently Asked Questions page of my website.

Live Online Events

In March, we teamed up with Babz Jackson (Balance with Babz) from Boston, USA, who is a lymphoedema therapist and yoga teacher, to bring our members a free online lymphatic chair-based yoga lesson for 45 minutes. We had such positive feedback, that we may do some more, not just with Babz, but with other online wellbeing specialists. They are free to participate and just require Zoom, Teams or Facebook. Keep an eye out for our emails and social media.

Interviews

I have been surprised and honoured to be interviewed by several of the lymphoedema sectors biggest names including: The BLS News & Views, Haddenham Healthcare and LymphShop Newsletters, plus a few more in the pipeline I can’t mention yet. Some will be recorded and shown online. If you are a member of an organisation or company and would like to seek the views and experiences of a man living with lymphoedema, I’m happy to help and raise awareness.

Podcasts

I have just started listening to podcasts when I go for a walk, 20-30 minutes at lunchtime is perfect laughing out loud to a good comedy, while getting strange looks from passers by! “When are you going to do a podcast?” I’ve been asked several times. “When I have the time and the knowledge on how to do them!” has been my instant reply. I will get around to it and I will let you know when they are ready for launch. If you have any subjects you would like me to cover, please let me know.

Lymphoedema United Charity Golf Day – 8 June 2022

I am organising the first of its kind apparently, a charity golf day where senior representatives of specialist lymphoedema suppliers will be playing golf with people that have (or loved ones that have) lymphoedema. In addition to the golf, there will be breakfast, a 2-course dinner, games, raffle, auction and the opportunity to meet other like-minded people living with lymphoedema. Entry fee is only £45 per person!

Partners are welcome, there are spa facilities available at the hotel. Most people who have booked are staying overnight at the hotel to make the most of this event.

100% of profits will be donated to the Lymphoedema Research Fund. Let me know if you’re interested in attending or supporting the day.

 https://lymphoedemaunited.com/information/charity-golf-day/

Bitesize News

Available Now

Top Tip

Spring is here, the sun is out, then in, then out! Now is the time to get out for a walk in the fresh air, taking some slow deep breaths while we appreciate how lucky we are compared to the broken families of Ukraine.

Lymphoedema Research Fund

Target: £250,000

Raised: £105,000

Date: 31st March 2022

Available Now

Top Tip

Spring is here, the sun is out, then in, then out!  Now is the time to get out for a walk in the fresh air, taking some slow deep breaths while we appreciate how lucky we are compared to the broken families of Ukraine.

Lymphoedema Research Fund

Target: £250,000

Raised: £90,000

Date: 31st March 2022

Follow us on:

www.lymphoedemaunited.com

Helping you to LIVE BETTER with LYMPHOEDEMA

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

 

 

 

 

 

 

 

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

Medical Advice Disclaimer

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

All material on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.

Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Reliance on any information provided on this website, by our employees and others appearing on the website is solely at your own risk.

For the avoidance of any doubt, Matt Hazledine has lymphoedema and is not a medical professional.