How my curiosity saved me.

6 years ago, I had a wake up call that shook me to my core.

After getting another serious cellulitis infection in my legs after giving birth to my second daughter (who is now 6), I struggled to get better in the post-partum period for months afterwards and I began to really question whether I could take care of my children and play an active role in their lives. It was a devastating thought to consider, but facing this truth helped me ultimately to take the steps that I needed to in order to make positive changes going forward.

After getting soooo many infections, despite following Lymphedema standards of care, wearing my compression daily, (and nightly), eating healthy, and taking good care of my skin, as well as regular exercise, I struggled with cellulitis infections that were becoming more and more severe every time I got one. Doesn’t this one above [picture of a large cellulitis infection look so sore? It sure was!

By the time Sage, my youngest came along, I had gotten a total of 25 infections in one or both legs over the years. Each time it left me with a limb that was more swollen and fibrotic than before, and less responsive to standard treatments like compression, lymph drainage massage, and exercise.

One part they don’t talk about when you get an infection is the emotional and mental toll it can have on you. As I watched my physical health continue to decline, and question myself as to whether I could care for my children, the frequent infections, were impacting my emotional health too. I cried a lot. If this is you, I see you, you are not alone!

There has to be another way and I’m going to find it.

I knew deep in my heart that there has to be others out there thriving with this. Saying this over and over, helped me find my courage to keep going. I told myself this one simple statement over and over: There has to be another way, and I’m going to find it. I knew I had to find my own answers and my own way. I let this question spark my curiosity to finding alternative treatments as well as other lymphedema folks who were thriving with their condition and asked questions, learned from their experience, and I found more than what i was hoping for. I found answers, ideas, and above all I found community! This gave me the push I needed to keep going. I said this thought to myself “There has to be another way and I’m going to find it” like a mantra and let my curiosity lead the way!

We are told by well meaning health professionals that Lymphedema is incurable, progressive as we age, and that there isn’t much we can do other than wear compression, avoid getting infections, and take good care of your skin. Kind of a depressing outlook isn’t it?

When I began looking for answers to my questions, I was astounded at what I found.

Not only did I made long-lasting connections with Lymphies living in other countries, I eventually learned about Ayurveda, Herbalism, and even Lymphatic microsurgeries that sounded very promising.

My first thought was ‘SURGERY?! But, we aren’t even supposed to get a cut or scratch on our affected limb, how can patients successfully undergo surgery?’

This journey was about curiosity, so I kicked my self-doubt to the curb and began to dig through the evidence. Being a former health librarian was super helpful as I undertook this step of inquiry in finding a better way forward. “Okay, so there were these surgeries and they sounded promising, but how long have they been done? Where can you get them done? What do the patients say? Are there any evidence in the medical published literature about them, and long-term studies?”

The results of my search shocked me.

Not only was there many, many articles about these different lymphatic microsurgeries, but they had been performed in Europe for over 25 years! 25+ years!! By this time, I had been living with Lymphedema for about 30 years, but in all the specialists I had seen in Canada in all those years in several different provinces and cities, not ONE had told me about these surgeries. They just weren’t being offered here it looked like. BUT why?!?!

This was too juicy of information to sit on, I printed out articles showing clinical trials that had been done, and found articles discussing efficacy of treatment, systematic reviews, and long term studies. I armed myself with evidence-based information and marched into my specialists office to show him what I had found. The reaction I got from my specialist was more than I had bargained for.

Not only had my specialist, a Vascular surgeon never heard of these procedures, when I showed him the evidence he sounded enthusiastic and interested, but when I asked for his support in seeking out these treatments, that is where it all fell apart. He was nearing the end of his practice and had no interest in helping me find a way to get these surgeries covered by Alberta Health Services. Lots and lots of paperwork. To him, my legs seemed manageable the way they were despite the infections and pointed out that many of his other lymphedema patients were worse off, so I should count my lucky stars. We agreed that he said he would sign the forms if I did all the paperwork. So, I said yes, and filled out all the forms, attached the supported evidence and sent to his office. He NEVER signed the papers despite repeated requests and even his clinic coordinator was pushing him to help out. No luck. Alberta Health Services even contacted him directly for support.

To go up against Alberta Health Services out of Country Care Committee without Doctor support, is like standing up for yourself in court. It is challenging and the system will throw things at that you aren’t really prepared for. I answered all their questions as best I could and their repeated requests for more information, names, contact info of these surgeons in various countries, but to no avail. As someone well educated, who has worked in the health information field, hunting for information for the doctors, I found this challenging. The mountain to climb that Alberta Health Services had created, would be almost unsurmountable for others less educated.

They declined my request and my appeal to their decision saying the surgery was too experimental. 25+ years of surgeries in other western countries, I would hardly call too experimental! It was less that 2 years later that a surgeon set up practice in Alberta offering these very same surgeries I had overseas…Was I angry Alberta Health Services put me through the wringer? For a while, yes, but it was a growth opportunity in learning how to stand up for myself and what I believed in. It prepared me for the next round of surgeries I had here in Canada 3 years later. I’ll save that story for another blog post.

My first surgery journey was with Dr. Corinne Becker, a renowned surgeon and beautiful human being working in Paris, France. Once we made contact, we arranged for myself to come and meet her and run some tests to see if I was a candidate for these surgeries, including a Lymphatic MRI. I was so excited to learn they had a test to visualize my lymphatics without the excruciating pain of the usual diagnostic test - a lymphoscintography!

Lymphatic MRI image of my left and right legs. A pain-free test that showed that I had smaller than usual lymph nodes and very tiny lymph vessels.

Here I am after my Lymphatic microsurgery with Dr. Corinne Becker in 2018. She performed a Suction Assisted Lipectolmy (SAPL) and Vascularized Lymph Node Transfer (VLNT) on my left leg. She is a true pioneer in her field and a beautiful human being inside and out.

4 years later, I am still infection free in my Left leg and the swelling has not returned to its former size! One immediate benefit of the surgery was the softness of my leg. It meant all the effort of compression, exercise, and massage were working wonders and I could see a different from my efforts! This is a huge motivation to keep going.

While I don’t feel that surgery is a cure or will take away my Lymphedema, it has made living with it much much easier! I could definitely get my legs smaller on my own with more exercise and more self-care, but I’m a work in progress and not perfect. I’m so grateful for the surgeries that allow me more freedom and less stress living with Lymphedema.

Considering surgery?

Reach out and book a consult with me and I can help with the Canadian surgery process to know who to contact,, how to get assessed if you are a candidate and what to expect before, during, and after. There are groups of surgeons now in Montreal, Calgary, Toronto, and the Vancouver area performing Lymphatic microsurgeries.

Right image: 2018 the night before my SAPL and VLNT surgery with Dr. Becker.

Left image: 2019, 1 year after surgery. I only had surgery on my left leg by this time, but you can see there has been a significant decrease in my right leg as well. Our bodies are whole beings and interconnected.