Lots of different people from all over the world join my groups, and the cause of their LE can vary from completely unknown to some known types of causes. One of those causes is May-Thurner Syndrome. I have met at least one person with MTS in person who lived in California. She explained to me in detail what living with MTS was like. For those that are unaware, here is a brief synopsis from Wikipedia.
“In medicine, May-Thurner syndrome (MTS), also known as the iliac vein compression syndrome, is a condition in which compression of the common venous outflow tract of the left lower extremity may cause discomfort, swelling, pain or blood clots (deep venous thrombosis) in the iliofemoral veins.
Specifically, the problem is due to left common iliac vein compression by the overlying right common iliac artery. This leads to stasis of blood, which predisposes to the formation of blood clots. Uncommon variations of MTS have been described, such as the right common iliac vein getting compressed by the right common iliac artery.
In the 21st century the May-Thurner syndrome definition has been expanded to a broader disease profile known as nonthrombotic iliac vein lesions (NIVL) which can involve both the right and left iliac veins as well as multiple other named venous segments. This syndrome frequently manifests as pain when the limb is dependent (hanging down the edge of a bed/chair) and/or significant swelling of the whole limb.” Source: Wikipedia May-Thurners
In other words, it’s painful.
When I saw Margo’s post squatting 90 lbs plus bar, I just had to reach out! That is an incredible feat for someone with MTS let alone LE. I know because I used to be able to do it in my 20’s and recognized the weight right away. I asked Margo if she would share her story and she agreed. She completely inspired me! I hope that you are inspired as well.
My name is Margo, and I have Trunk and Left Leg Lymphedema secondary to venous insuffciency. In 2014, I was a totally healthy 54 year old personal trainer when my left leg started blowing up. After 3 years of finding the right docs and numerous procedures, I ended up with May-Thurners Syndrome diagnosis and a stent, 5 venous ablations, Pelvic Congestion Syndrome with 2 embolizations and subsequently LE in my trunk, groin, and leg. The most puzzling and frustrating diagnosis was LE.
I was frustrated with the therapy I received, and the lack of information and education. Luckily, I am still a licensed physical therapist, so I went to the Academy of Lymphatic Studies to become a LANA Certified Lymphedema Therapist. It was life changing.
I started my own daily MLD and bandaging. I stopped being afraid to exercise and slowly began my own rehab. I am starting my own Lymph Clinic to share what has helped me the most: self-MLD, bandaging and daily exercise.
I recently went to the Interventional Radiologist for a 6 month follow up from the last pelvic embolization. I have had much less swelling in my groin, though it does persist. He was very pleased with my progress and gives credit to the MLD and progressive exercise. He believes it challenges the system over time and helps build new collateral vessels and strengthens the lymph system.
I was wearing my Lymphie Strong T-shirt, and he asked to take a pic of it to share on his social media. He also asked me to thank Lymphie Strong/Vern for the work she is doing to promote education but mostly to get people with lymphedema MOVING.
In the past 6 months, I have stepped up my training and I am slowly getting back my strength and endurance. I posted some pics to my social media to help encourage others to keep pushing the limit slowly and consistently. I am not giving in to lymphedema.
I thank God for the strength and fellowship I have found in Lymphie Strong and all the Lymph groups, because lymphedema is a DAILY struggle and we need DAILY encouragement to fight this battle and #movethatlymph.
Visit Margo at Lymphedemahealthandwellness.com – Keep shining, Margo!!!
Thanks and wishing you great lymphatic health,