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Popliteal Artery Entrapment Syndrome…Is anyone out there?
Howdy Everyone,
PAES is extremely rare. I would love to find other polers who have been diagnosed with this. I am going to post the cliff notes version of my journey below.
I have been suffering from functional Popliteal Artery Entrapment Syndrome (PAES) for close to 5 years. I worked through the symptoms untill they became completely unmanagable. In 2014 I started seeking treatment and a diagnosis for the severe cramping and numbness I had in my lower legs. I could push through the pain but my body started to retaliate I lost the ability to walk inclines, driving was excrutiating, steps sucked ass, and after a while even walking was a chore. The testing was invasive, painful, and frusterating. At the end of 2015 I was finally positively diagnosed with functional PAES. An angiogram revealed that I had 100% occlusion in my left leg and 90% in my right. The dangers of no blood flow could lead to damage in my artery, blood clots, and eventually the loss of my legs. I scheduled my surgery the next week for my left leg with a local vascular. The week before Christmas a golf ball chunk of gastrocnemius and partial fasioctomy was done on my leg. I suffered severe nerve damage and no longer have feeling over 50% of my lower leg. I decided to proceed with my right leg in Janurary a little over a month later. The same procedure was done. In February I noticed that my legs were actually worse feeling. My doctor refused to believe me and put me through another on slaught of testing not willing to accept the fact that his surgery didn’t work and not enough muscle was removed. I researched other doctors and ended up at UMMC with the cheif of vascular surgery after another angiogram it became evident that I no longer had any blood flow in either leg. He brough on an ortho to assist with the muscle portion while he worked with the artery. In June I had my left leg operated on again. I had a fist sized amount of gastrocnemius removed, my entire plantaris, an absurd amount of scar tissue, and part of my soleus removed and the insert the artery went through widened. I had the same done to the right leg 2 weeks ago. My ortho insists I will never pole or do aerials again.
I am crushed and devistated and will totally go against his AMA. I feel like he didn’t listen to me before the first surgery when I informed him if that was his prognosis he can just amputate. I just find it absurd. Had a runner come in and had the surgery they wouldn’t dream of telling them to cut it out of their lives. I think he believes this is a silly hobby. This silly hobby has been my life since 2009.
I am just looking for someone who has been through this. The expeirence enough is damaging and life changing and it is difficult when no one has heard of this or understands what is happening. I now have PTSD and panic attacks before every appointment. Everyone gets sprains and breaks, but no one understands this invisible thing that no one can see. Through this experience I have lost some of my best friends and of course gained others. I am still trying to recover from the abandonment I felt as I laid around in hospitals weeks at a time and how lonely it was when I couldn’t manage to leave my house. Little did everyone know every time I went out was a painful constant battle with dying legs. I don’t mean to whine. I have learned so much and will never take my body for granted again. I have gained some amazing and true friendships and my husband and family are the only things that kept me going.
Love
Dino -
2 Replies
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Omg, I’m so sorry you’re having to go through this! Pole is a very important part of many people’s lives and to not have that acknowledged is heartbreaking and I can see that making the healing process more challenging too! I have no knowledge of this syndrome but I just wanted to let you know we’re here for you!! 💜💜
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Hey Dino,
I saw you post and I wanted to let you know I understand your pain. I was diagnosed with polpetial entrapment syndrome in 2012. It took forever for the doctor to figure out what the hell was going on with my leg. They ran tons of tests and it wasn’t until the 3rd vascular ultra sound that they finally figured out what was going on. I had a by pass done a few years ago and that collapsed, then they put in stints in the by pass and that collapsed. I went to my doctor after that and was pretty much told there was nothing more they could do. I was supposed to join the Army JAG corps but because of this problem I had to withdraw. It has ruined my heath in so many ways. I used to run all the time but I can barely walk a block without the pain killing me. I totally know what you mean by silent condition. My mom seems to think that it’s simply because I’m fat that I suffer from this. No one understands the excruciating pain that starts to shoot up your legs. I feel like people and my family think I’m making this up. So just so you know, I hear you. I feel at a loss for a solution. And it’s incredibly disheartening.
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