Help Caitlyn Run Again: Treatment for fPAEs

Everyone has probably heard the story or even experienced it themselves of someone getting glasses for the first time and suddenly realizing the trees had leaves!....That has been my experience since receiving a diagnosis and a first round of treatment for Functional Popliteal Artery Entrapment Syndrome and Chronic Exertional Compartment Syndrome. It’s a rare condition where my own calf muscles strangle the arteries and veins behind the knee preventing blood from carrying adequate nutrients to the muscles, and making it pool in the lower legs causing significant pain.... pain that I thought was normal until recently.

I’m 36 years old and have been a competitive runner my whole life. I’ve won several championships at every level from high school, college, and beyond. I even attended the NCAA National championships and was inducted into both my high school and college Hall of Fame. I always struggled with severe pain and injuries but attributed them to hard training and thought everyone felt it too. I assumed for some reason I was less tolerant to the pain than everyone else until the pain escalated so bad I could no longer run. The pain continued to escalate and simple tasks like standing on my feet to do dishes, teaching a class standing at the board, walking up stairs were all a challenge. I have two young children, 5 and 3. I used to be able to at least tolerate playtime, but now I can’t play with them at the playground without shooting pain...

This condition is rare, misunderstood, and often as a result, surgeries are unsuccessful. I’m in a support group where some people eventually have had leg amputations as a last resort to alleviate their symptoms. It took almost four years to receive a diagnosis. I traveled halfway across the country away from the best hospitals in the US, to see the ONE doctor in the world who is treating this non-surgically and with greater success. He recently treated me, and it’s working! I didn’t know a life without pain in my legs was even possible! It’s working in my day to day life, which is amazing but isn’t working completely. I still have symptoms for any task where I have to run or move suddenly. Often patients need a few touch ups or follow ups for the procedure to be successful. It’s not covered by insurance, but it’s critical to get treatment sequentially so that the original treatment doesn’t wear off. I have already invested the first 15k for flights, hotels, scans, and treatment. $6,000 should be enough to cover this next, and *hopefully* last treatment. We planned to save and pay ourselves, but my slow progress suggests I need a second treatment much sooner than we can budget for.

I greatly appreciate every single person that has helped me in this journey. In the grave scheme of medical challenges, I know there could be much worse! If I exceed my fundraising goal I vow to donate any additional funding to another worthy cause on this site.

Thank you so much!

Caitlyn Germain, Massachusetts

I blog weekly about my experience with treatment here: www.cmomrunfast.com/blog

The doctors research on this condition can be found here: https://journals.lww.com/cjsportsmed/abstract/9000/chronic_exertional_compartment_syndrome_caused_by.98880.aspx