As some of you will know, I suffer severely from lymphedema following my cancer treatment when I was 29 years old. Lymphedema is the swelling of an area due to the build-up of lymph fluid. I have secondary lymphedema which is generally caused by cancer treatment. I carry about 5 kg of additional weight in my right leg with the majority of it being below the knee. When they found the cancer in the lymphs in my groin in 2011, they had to remove the lymphs in the groin and pelvis and then also had to do 6 weeks of radiation. I was immediately made aware of the fact that I may suffer from lymphedema because of the damage that had been done to my lymph system and so I was proactive about seeking treatment and getting in top of it. Between then and when I had Murray, we managed to control the lymphedema well and there was almost no difference in size between my 2 legs.
What none of us had realized is that the lymph fluid had created new paths through my pelvis and when I had my c-section this permanently damaged the new routes that the lymph fluid had created. Within a matter of a few weeks right leg blew up to almost twice the size of the left one, and we have battled to get it back under control ever since then. Below are my legs as at 5 March 2020 (it is a HUGE thing for me to share these photos on this forum).
We have done absolutely everything we can to manage this issue conservatively. I have gone for manual lymph drainage (MLD) and bandaging pretty much twice a week for the last 8 years. My lymph therapist Vaunda and I have seen each other more than 800 times! I wear custom compression all of my waking hours and I try and keep my weight under control. I exercise, eat well, we have tried lots of different techniques on my leg, and none of them have led to long term improvements.
There is so much more to this than me just having a “fat” leg. This has a huge impact on me both mentally and physically. To name just a few things that my lymphedema is effecting: My mobility is starting to become impacted, I can no longer run, I am having back and hip pain and constantly pulling muscles because of every other area of my body having to over-compensate. The clothing and footwear that I am able to wear is becoming increasingly limited, and all of this is impacting on my mental state of mind. Without surgical intervention, I believe that I will land up in a situation where I will no longer be able to function normally and my mobility will be severely impacted especially as I get older.
2 years ago, I had a vascularized lymph node transplant (VLNT) which was successful in that it improved the quality of the leg dramatically. The leg is no longer as “angry” and red, it is much softer, and I don’t constantly have that feeling of an overstuffed pork sausage which wants to explode. I wrote about this here. https://isabella1509.com/2018/01/25/my-lymph-node-transplant-by-simone/
However, what research has shown is that lymph fluid that sits stagnant in the limb for long periods of time actually turns into adipose fatty tissue. This means that the bulk in my leg has largely changed from lymph fluid to adipose tissue and it doesn’t matter how well the VLNT may work, it can only move lymph fluid not bulky tissue. About 5 years ago Vaunda and I started looking at the different surgical options available to us because none of our conservative measures had worked. At the time there was nothing available in SA at all. The 2 options we mainly explored where the VLNT surgery, which I had 2 years ago as soon as I could in SA, and the other was a special type of debulking surgery. This is a surgery that was pioneered by Dr Brorson in Sweden over 30 years ago. It is essentially a special type of power-assisted liposuction which is performed. The results and benefit over many years for patients with non-pitting lymphedema (limited fluid in the leg – like mine) and with a large sample size, are clear. He has taught doctors all over the world to perform this procedure. Many centres of excellence have been set up worldwide where this procedure is being done and where many patients are being successfully treated. Below are 2 before and after pics of his patients.
I researched the possibility of going to have the surgery in Sweden, but the cost and number of times I would need to be in Sweden made it a non-viable option. So, I then embarked on trying to find a doctor in SA to go to Sweden to train with Dr Brorson in this technique and bring it back to SA.
Enter the wonderful Dr Laura Redman. Laura is a vascular surgeon who I first saw 4.5 years ago to ensure that I didn’t have any vascular issues. She has always had an interest in lymphedema, in learning more about it and it trying to help patients who up until this point have been told that there is no help for them. She organized with Dr Brorson to go over to Sweden with a lymph therapist, Suzi Davey (another amazing human) to be trained in this technique late last year and they both self-funded this trip. There is also some very specific (and expensive) machinery which is required to perform the surgery which is not available in SA either, which created another long delay. The hospital was unfortunately not forthcoming in importing the machine, so Laura went ahead and brought the machine herself…how cool is that?
I then took on my medical aid. After a long and very frustrating struggle with them I have managed to get them to cover the operation through one of their trial programs but they have put some (quite ridiculous) restrictions around what they will pay so I am still busy discussing this with them. But as a first step, they have acknowledged the benefit of this sort of surgery and have done a lot of work around lymphedema. So, all steps in the right direction.
To cut to the chase, I had the debulking surgery last Friday 6 March. The build up to it was quite something! It was a first for me, first for our medical team, first time this op was happening in Africa and it had so much interest from so many people and the hospital itself! I landed up doing a few interviews which will appear in the coming weeks. We are trying to raise as much awareness around what we are doing as possible so that people are aware of what progress is being made here in SA with regards lymphedema and that it isn’t necessarily completely hopeless.
There were A LOT of people in surgery with us and my wonderful plastic surgeon, Roger Graham who had done all my cancer surgery, was there to assist Laura, together with another plastic surgeon. The surgery took much longer than they expected – nearly 6 hours rather than 3.5 hours (I have some very concerned family members waiting outside theatre for me having near heart failure) and they managed to get out almost 5kg which is amazing – 3.5 g below the knee and 1.5kg above the knee! They then put me in 2 very hectic custom compression garments which had been made to measure according to the normal leg before surgery. I have no idea how they managed to get it on in theatre! I then had to keep that on for 48 hours, have my first shower and put on the new compression which then needs to be changed every 24 hours. I need to now stay in as much compression as I can handle 247 for the rest of my life to stop the lymph fluid building up again.
I wont lie, the down time afterwards has been much more than I expected. I think that I have quite a high pain threshold, but I have been in a lot of pain. The amount of compression that you have to tolerate post op is quite something and I found that I had a lot of nerve pain which has been almost unbearable at times. The last day or 2 the pain has definitely started to improve, and I have a better tolerance with all the compression too. I now need to try and increase the compression even more if I can as this will be beneficial for long term results. Today I have also been able to take a bit less pain medication and I have felt less out of it which is great. The full result of the surgery will only be seen in about a year’s time but each day this week I can see an improvement already, so I know that I just need to be patient.
There are so many people that I need to thank who got me to this point and I know it will never be able to do them justice:
Vaunda Parsonage – thank you for always being in my corner. For never accepting the status quo and for constantly upskilling yourself to try and help me better. Without you, I would never have got in touch with Dr Brorson or Laura in the first place and we would never have started down this road. You have literally held my hand through so many things – lymph related and not – and I am forever grateful to you!
Laura – as my card to you said, I will never be able to find sufficient words to thank you. You never accepted no for an answer, approached and overcame every hurdle that we came up against and I always knew that I could trust you completely. No question or detail was ever too much for you to answer or consider and you are a remarkable doctor in every sense of the word! Thank you for wanting to change people’s lives like you do.
Suzi – thank you for taking such a personal interest in me and for being so willing to assist and drive things like you have. Not only did you jump at going to Sweden at huge personal expense, but you have also been so willing to share all the information and educate others. Thank you for giving so much of your time and energy and for pioneering so much of this for lymphedema patients in SA.
Wendy and Kathy Greathead, and Roger Graham – thank you for forming part of my amazing medical team, for always applying your minds, being there for me and making sure I get the best outcome possible.
To my family, especially my dad, James and Sam – thank you for supporting me like you do, for always being there and understanding why I need to try and keep on improving things rather than accepting the status quo and for taking on all the stress that comes with that.