Volume 13 – October 2024

Welcome to our thirteenth LymphUnited Newsletter, which includes a variety of subjects that aim to share experiences and help you to live better with lymphoedema.

Having lymphoedema can be a lonely place sometimes and I am passionate about uniting the lymphoedema community, both online and in person. You are NOT alone!

This issue includes a variety of articles including ‘Spotlight on Oxford Lymphoedema Practice’, ‘Meet the Members from England and America, News on our Charity Donations, plus the date and venue of our 2025 Charity Golf Day’. 

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

Ultimately, this newsletter is for your benefit. Therefore, I welcome your feedback or any requests you have for future content.

Contact Matt at Hello@lymphunited.com.

Spotlight on Oxford Lymphoedema Practice

Can you tell us about the Oxford Lymphoedema Practice and how it was formed?

Alex Ramsden and Dominic Furniss set up OLP in 2013 to provide the UK’s first surgical service for patients with lymphoedema. They both trained in Japan under the guidance of Professor Koshima and his team to learn LVA supermicrosurgery for the treatment of early secondary lymphoedema. Dominic performed the first case of LVA in the UK soon after returning from his Fellowship in Tokyo.

What surgeries do you provide, specifically for people living with lymphoedema?

We provide a comprehensive service for patients with lymphoedema. For those at high risk of developing lymphoedema, for example after lymph node surgery for cancer, we can screen with ICG lymphography to map the lymphatics and detect the earliest signs of lymphoedema. For those with early stage lymphoedema with good remaining function in their lymphatic channels we can provide reconstructive supermicrosurgery (LVA) to interrupt the progressive cycle of lymphoedema and reduce or stabilise their disease in the long term. In those with specific problems requiring lymph node transfer (LNT), we are experienced in providing this kind of microsurgical reconstruction. Finally, for those who have advanced lymphoedema with secondary fatty overgrowth, we can provide liposuction and controlled compression therapy to correct the excess volume and improve quality of life.

Liposuction for lymphoedema

This surgery removes the excess fatty tissue that has formed as a result of long-term fluid accumulation, in patients who wear their compression diligently. It is an excellent operation for those with advanced lymphoedema and poor remaining lymphatic function. The operation can predictably reduce the volume of a limb back to a normal size. The operation is performed under general anaesthetic, and requires a two-night hospital stay. Afterwards, patients need to be committed to compression to prevent the swelling (and therefore the fat overgrowth) from coming back.

What are the pros and cons of having surgery? For example, are the results permanent?

In terms of the long-term results, both LVA surgery and liposuction for lymphoedema have well proven long-term benefits for patients. Every operation has its potential complications, and patients should discuss this with their surgeon. Possible complications that occur in every operation include scarring, infection, some pain and swelling. Operations under general anaesthetic generally carry more risk than those under local anaesthetic.

What is the process of finding out if surgery is right for a person with this condition?

We undertake an initial consultation over Zoom, where we discuss the patient’s history of their swelling. We also explain the pathological process that leads to lymphoedema. For some patients, it is evident that surgery won’t be helpful for them. For others, we then arrange a face-to-face appointment where we perform a detailed history, clinical examination, measurement, and ICG scan to determine the function of the lymphatics. We also sometimes perform a specialist MRI scan to determine the balance of fat and fluid in the limb, particularly if we are contemplating a liposuction operation. Armed with this detailed assessment, we can discuss with our patient the options they have for managing their lymphoedema, either with surgery or using non-surgical methods.

What are the costs involved?

The cost of an initial Zoom appointment is £100. The cost of surgery varies widely depending on which specific operation is recommended by the surgeon, the hospital costs, and requirements for post-operative compression.

Tell us about your team of surgeons and how many procedures they do each year?

Dominic, Alex, and Sinclair are all Consultant Plastic and Reconstructive Surgeons at Oxford University Hospitals, and in addition Dominic is Professor of Plastic and Reconstructive Surgery at Oxford University. All three are dedicated to treating lymphoedema patients at Oxford Lymphoedema Practice. Dominic and Alex pioneered the use of supermicrosurgery for lymphoedema in the UK back in 2012, and Sinclair joined the practice in 2015. Together, we have operated on over 375 patients with lymphoedema.

Please provide you contact details and approximate timescales for an initial assessment?

 An initial Zoom assessment can usually be completed within a couple of weeks.

www.olp.surgery

info@olp.surgery

01869 351300

For further information about Professor Dominic Furniss and our panel of lymphoedema experts, visit lymphoedemaunited.com/meet-the-experts

I returned to Wales, for my second summer. I was on the running machine in the gym battling through the pain in my leg. I knew I couldn’t carry on. Something was seriously wrong. I decided to get a second opinion in the UK having been told the pain was psychological in the US.

A physical exam and MRI revealed my leg was in worse shape than I thought. I was told I risked losing function in my right leg if I continued to play. I had unstable syndesmosis and an externally rotated tibia, which was impacting the way my leg functioned to my hip. On November 7th, 2007, I finally got the reconstructive surgery with brand new technology implanted into my leg in the form of a syndesmosis tightrope. This officially marked the end of my football career and a major shift in my identity as I also had to drop out of university.

My relationship with my right leg was complicated. I resented it. I tried to rebel from the advice that I was not allowed to play sports that involved changing direction quickly (cutting). I joined a local football team and lasted a few matches. I couldn’t do it. In 2017 I attempted to play squash, and because of my strained anatomy tore my meniscus, adding another layer of injury. This knee injury went on to plague me for 6 years. The ongoing challenges were daunting, but I thought I could still handle it.

In July 2022, I returned from a mountain run to find significant swelling in my groin. At first, I dismissed it, attributing it to overcompensation from my leg.

When I got my knee surgery the following year, my right leg was about to change my life forever – yet again.

My knee was swollen post-surgery, which is normal. But it went on for too long and I noticed that my leg couldn’t get rid of the swelling and my swollen right groin became a swollen right thigh. The Summer of 2023 was horrendous. Every day my leg swelled and felt like it was going to burst. It would reduce overnight so I’d wake up able to start the day afresh but as I went into Autumn, the swelling was starting to become permanent, and my right thigh was getting noticeable larger.

I visited my doctor multiple times, had suspected hernia and subsequent ultrasounds, I had a CT scan and even faced a DVT scare. Each visit felt like a dead end—rejected referrals and unanswered questions left me frustrated. I realised I had to fight for my health and advocate for myself in ways I never imagined.

It was during this time that I realised I needed to advocate for myself on a whole new level and Google was telling me it could be something called lymphoedema or compressed veins. My doctor wasn’t going to be able to help me.

I fought with the system to get glimpses of help and answers. I called Bupa and asked if they had anyone registered as a lymphoedema specialist. They had one name – Janet Thompson. I called Jan and now consider her a friend. She taught me how to start looking after my leg. I bought some compression and started taping and I noticed that this allowed me to manage the daily symptoms and stopped the swelling getting worse. I will be forever thankful to Jan for the way that she supported me during that time. Jan suspected it was primary lymphoedema but didn’t want that to be the answer. I actually wanted it to be my veins because it seemed like there would be more help if that were the case – and also veins could be fixed. I needed to know for sure.

I reached out to the renowned venous specialist David Greenstein, crafting my own reason for referral.

After a thorough examination, he confirmed my veins were healthy, but a lymphoscintigraphy test showed abnormal lymphatic flow—my lymphatic system wasn’t working correctly, and fluid was spilling out under my skin. He couldn’t help me. He mentioned the Oxford Lymphoedema Practice (OLP) as a reputable clinic but was unsure about the costs and what they could do for me.

Determined to find answers, I reached out to OLP. After an ICG Lymphography, it was confirmed. I had sclerosis of the lymph nodes in my right groin, in incredibly rare form of primary lymphoedema. It’s possible that the previous trauma in my right leg triggered the genetic lymphatic weakness.

Fortunately, I was told I qualified for LVA surgery because the swelling had started in my groin so suggested the problem was with my lymph nodes rather than my vessels. So, the creation of a new drainage pathway would in theory help. The team made it clear that the surgery might not work, and that even if it did work, I still had to wear compression for the rest of my life (the compression pushed the lymph through the newly constructed pathway).

So, at age 36, in the best shape of my life – I was diagnosed with a permanent, chronic disease that was officially going to change my life forever.

With the realisation that I couldn’t be cured, and that this thing would be progressive I felt angry, upset, sad, depressed… I later learned that I went through the stages of grief. I was grieving that as I’d finally managed to repair the relationship I had with my right leg, that the same leg had thrown me another curveball. And this curveball will affect every facet of my daily life, for the rest of my life.

I had the surgery in August 2024 and am healing well. I’m not sure of the results yet, but I know that it can take more than 6 months to understand if the surgery has been a success. Watch this space.

Living with lymphoedema requires commitment and self-love. You must invest in your immune system and protect your mobility. My self-care routine is significant and I’m grateful I have the motivation to show up for myself every single day. Being diagnosed is daunting and the outlook is devastating. With Jan’s support; a team of the best lymphatic surgeons in the world at the OLP; and a relentless self-advocacy which has led to me being a patient with Lymphoedema Wales, I have realised that there is another way.

I’ve joined the Patient Advisory Board for Lymphoedema Wales; and have partnered with two other young adults to build an independent peer support group, our goal to help others to embrace life with lymphoedema and thrive in their unique way. I also secured a $20,000 grant for the Lymphoedema Support Network, thanks to support from my employer – Adobe.

I have primary lymphoedema for the rest of my life and I intend to do something good. I want to make a meaningful difference whilst also living my life to the fullest. I am not going to let this disease stop me from doing or achieving anything. And you shouldn’t either. We are a powerful community and if we come together to fight our corner, we will drive positive change to create a better outlook for every single person living the rest of their life with lymphoedema.

Thank you Emma for sharing your journey with us.  I cannot begin to image the many emotions you have felt over the years but I applaud you for turning a life-changing experience into an opportunity to help the lymphoedema community in numerous ways, in such a short period of time. Thank you.

To read other stories from our members, visit lymphoedemaunited.com/meet-the-members

I’ve joined the Patient Advisory Board for Lymphoedema Wales; and have partnered with two other young adults to build an independent peer support group, our goal to help others to embrace life with lymphoedema and thrive in their unique way. I also secured a $20,000 grant for the Lymphoedema Support Network, thanks to support from my employer – Adobe.

I have primary lymphoedema for the rest of my life and I intend to do something good. I want to make a meaningful difference whilst also living my life to the fullest. I am not going to let this disease stop me from doing or achieving anything. And you shouldn’t either. We are a powerful community and if we come together to fight our corner, we will drive positive change to create a better outlook for every single person living the rest of their life with lymphoedema.

Thank you Emma for sharing your journey with us.  I cannot begin to image the many emotions you have felt over the years but I applaud you for turning a life-changing experience into an opportunity to help the lymphoedema community in numerous ways, in such a short period of time. Thank you.

To read other stories from our members, visit lymphoedemaunited.com/meet-the-members

The ankle swelling wasn’t painful, my PT colleagues were equally confused as I had not sprained my ankle, and it would resolve on its own as quickly as it came on, so I never sought any medical help for answers at the time. Even though I had first heard of lymphedema in physical therapy school, I only understood it to be a possible consequence from the treatment for breast cancer. It never once occurred to me that I could have lymphedema as I’ve never had cancer, and I honestly did not know that one could develop it in the legs.

So, when I could no longer ignore my swollen leg and was forced to stop training for the marathon, I searched the Internet for answers and the pictures that I saw showed lymphedema as a possibility. I made an appointment with my primary doctor suggesting I may have this but not fully understanding it. I do not believe this doctor really knew much about what was going on either as I don’t recall her giving me any answers as testing was negative for a blood clot, but she did refer me to a lymphedema doctor in town. I now understand how lucky I am to have found a lymphedema doctor so quickly and so close to me, and she diagnosed me with (primary) lymphedema as I had suspected and referred me to physical therapy for manual lymphatic drainage (MLD) and combined decongestive therapy (CDT). I was an emotional mess during that appointment and could not stop crying as I felt my world was shutting down because I could no longer run like I enjoyed (although I do not remember her ever saying I could not run again). The only thing I remember other than being diagnosed was that she suggested I become a Vodder lymphedema therapist one day. I did undergo my first CDT/lymphedema treatment and saw a remarkable reduction in the size of my leg, although I was frustrated that the swelling in my knee never fully reduced back to its normal size like I had hoped.

My previously active life as I knew it drastically changed over the years. I tried my best to live with this new condition without personally knowing anyone else who had it and before the days of social media.  I was afraid to attempt running again because as I would try to do other intense exercise while wearing my new compression garment, my leg would uncomfortably swell. I eventually became a certified lymphedema therapist myself through the Dr Vodder School, although in the past I did not like to use this skill as I tried to run from anything reminding me of living with this disease.  I’ve always been compliant with wearing both day and night compression garments, but my leg continued to slowly swell and become more fibrotic, and my body grew tighter and tighter as I no longer had running as an outlet to help keep my mental health in check. I’ve had cellulitis twice over the years but thankfully caught it very early both times and was able to quickly get on oral antibiotics.

In 2015 I was introduced to John F. Barnes myofascial release, and it has made a significant impact in my life and brought me back into my body, instead of trying to escape it. I have made positive changes in my diet, exercise routine (although it looks different now), self-care, self-talk, and self-love including recently undergoing CDT after not having treatment in 9 years (as medical professionals we can sometimes be the worst at taking care of ourselves and admitting we need help too!). I admit I keep hoping for a miracle and that one day I will wake up with a normal size leg, however I’ve also learned that just because I have lymphedema it does not have to define me. There are many sides to me and lymphedema is just one of them. I now accept my lymphedema reality and take better care of myself so that I can take care of my family and patients without sacrificing my health. I talk much more now about having lymphedema although I’m still not good at showing it. Although I’ve been really good at hiding my leg, I feel this is not doing the lymphedema world any justice, so I have been slowly coming out of the lymphedema closet so to speak to help spread much needed awareness.

With global recognition as a model and Paralympian medallist, Didi is a fantastic role model for people living with lymphoedema, especially children and young adults. She had demonstrated that anything is possible and that living with lymphoedema shouldn’t hold you back in achieving your dreams.

Well done, Didi!  The lymphoedema community salutes you and applauds your achievements.

To read Didi’s story visit lymphoedemaunited.com/meet-the-members

Lymphoedema United – Donations to Charity

Over £18k raised in 3 years

At the end of July 2024, Lymphoedema United Ltd completed its third trading year. As promised, 25% of annual pre-tax profits from my book ‘How to Live Better with Lymphoedema – Meet the Experts’ and 10% from the website was to be donated to lymphoedema charities.

I am delighted to announce that the following donations have been made to the following charities:

£363.78 to the International Lymphoedema Framework (ILF)

£250.00 to the Lymphoedema Support Network

£360.88 to the Lymphoedema Research Fund, managed by St George’s Hospital Charity.

This is in addition to £5,809 raised at our annual charity golf day for the Lymphoedema Research Fund.

In the first three years of trading, we have raised £18,238 to support lymphoedema charities. Thank you for supporting Lymphoedema United and purchasing my book.

To find out more about the charities we support, click here lymphoedemaunited.com/supported-charities

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