Discussions By Condition: Leg conditions

Popliteal Artery Entrapment Syndrome

Posted In: Leg conditions 36 Replies
  • Posted By: bknotwell
  • June 16, 2008
  • 10:55 AM

I have been diagnosed with popliteal artery entrapment syndrome in both legs and was wondering if anyone else out there has this condition.

My symptoms are when walking my feet would go numb and then I experience pain down the sides of my calves but the pain would go away upon rest (claudication). I found the more I walked the longer it would take to recouperate. The pain has esculated over the years and I can only walk about 50 meters before I experience pain. I have been going to doctors for the last 7 years trying to get a diagnosis. I was always told to stretch my calf muscles or that I had shin splints.

After many tests, I was finally diagnosed in March 2008 and have had my first surgery on my left leg (it was 100% occluded upon flexing my foot and pointing my toe) in April 2008.

I was wondering if anyone has had surgery so I know if my recovery is going normally. Not much information is out there for this condition since it is not all that common. I have found no information on recovery from surgery.

Anyone out there that could help, it would be much appreciated.

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36 Replies:

  • I just saw your posting today..hopefully your recovery has gone well. I was diagnosed with PAES in 1990, I was 19 years old. My artery was occluded with thrombis so I had to have artery bypass surgery on my right leg. My left leg was developing symtoms recently and I had that released last Nov. I have a little numbness due to nerve damage from the surgery but I can live with it. I'm interested to know what test did they finally do that confirmed you had PAES? My 17yr old is presenting symptoms and the dr. here said PAES is not hereditary and the only way to confirm it is if they do exploritory surgery. I know this is not accurate.
    gitele 3 Replies
    • November 25, 2008
    • 08:08 PM
    • 0
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  • Hi, I am now on my second surgery! Just had it on Monday. There is another thread under Vascular Conditions that may help with your questions since that's where everyone is posting. http://forums.wrongdiagnosis.com/showthread.php?t=29978 So you may want to post your recent post on this thread there. I will respond later today since I can't handle sitting with my leg not propped up for too long. Brenda
    bknotwell 53 Replies
    • November 26, 2008
    • 01:02 AM
    • 0
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  • The tests that I had were the following:Numerous blood tests to check for other vascular conditions - results were all normalABI (Ankle Brachial Index) - this test is done while at rest. Blood pressures are taken in both arms and both ankles. A doppler is also used to check the blood flow of different arteries from your groin area all the way down to your feet. - my result was normal - However, if this test is done at rest and also after walking on a treadmill for some time, the test would show there is a problem.Checked Pulse in Feet - I had a good pulse in both feet at rest but my pulse was lost in both feet when I pointed or flexed my foot. This is when my doctor mentioned that I could have PAES.Ultrasound - an ultrasound was performed on the back of my knee and I was told to point my toe and flex my foot - my results showed there was definitely a problem with both legs (left leg was assumed to be worse) but couldn't make an official diagnosis without further testing.CT Scan - results were normal and showed no arterial damage.Arteriogram with run off - Showed that I definitely had PAES and it was bilateral. Left leg was 100% occluded and right leg was 80% occluded when pointing or flexing my foot - This is when I got an official diagnosis.MRI - this test was done so the surgeons could get a better look at my arteries.I have no idea if PAES is hereditary but I know that big calves can be. There are several types of PAES. Some are considered a birth defect (the artery itself is in the wrong place) and some are caused from the calf muscle being so large and strong that it squeezes the artery. Of all the people that I have spoken to, I have never heard of them having exploratory surgery. I guess the surgery for releasing the artery can be considered exploratory since most of the time the doctors do not know what they are up against until they actually open you up. But many tests need to be performed before any diagnosis or surgery is performed. There is too much technology out there. Maybe you should change doctors?!? How were you diagnosed and what tests were performed on you before you had surgery on your legs? Curious,Brenda
    bknotwell 53 Replies
    • November 30, 2008
    • 02:10 PM
    • 0
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  • One my friend has been diagnosed popliteal artery entrapment syndrome, it is on early stage, should he go for surgery?
    macospro 1 Replies Flag this Response
  • One my friend has been diagnosed popliteal artery entrapment syndrome, it is on early stage, should he go for surgery? Really the only options your friend has is to do nothing and eventually not be able to walk and possibly lose his leg(s), have surgery, or get botox injections. Not really sure about the botox injections. I think it is still in the experimental phases and I do not think that it helps with all types of PAES. I realize how this can be frightening for your friend. I've been there. So tell him to really think about what he wants to do and what kind of life he wants to live. Also tell him to get a second opionion if possible. Hope all goes well with your friend. Let me know if I can answer any more of your questions.
    bknotwell 53 Replies Flag this Response
  • What were your symptoms? I have been struggling with lateral lower outside leg pain since June (10 months ago) I am 17 and this pain had caused me to quit my school sports. It is aggravated with exercise such as running or walking for a distance. My feet often fall asleep as well. I have had everything from an x-ray to a bone scan to a nerve conduction test. I even had a compartment syndrome test but the results were borderline. I have seen multiple doctors and no one has any idea of what to do so I began my own research. I came across paes and was wondering if you could give me some more detail about it because it is hard to find online. If you could tell me what your symptoms were,, how you were diagnosed, etc. that would be great!
    Anonymous 42,789 Replies Flag this Response
  • Im a 19 year old, very active, college athlete and had been diagnosed with popliteal artery entrapment syndrome about 5-6 years back. It took half a dozens tests to determine it (MRIs, angio... but the treadmill test did it for me) I had both legs released, front and back over the past 5 years. I felt a bit better after a short time then felt the same charlie-horse like cramping on exercise, cold feet, and numbness. Last november got more testing including a pressure test and was diagnosed with the compartment syndrome as well. now almost 5 months after a double surgery still feeling the same pain..anyone have any ideas/advice. anything at alll??
    Anonymous 42,789 Replies Flag this Response
  • I just saw your post and I feel your pain. I am just 2 months out from my first surgery and I am still wondering if it worked at all. My other leg is killing me trying to do the rehab for the leg I had surgey on for PAE. I also had the compartment syndrome tests done as well, but they came back normal. I keep trying to find other options as well. I am keeping my fingers crossed for you. I am normally an avid runner and I have always been very active. For the past year, I have been stuck in pain trying to figure out what is wrong.
    Anonymous 42,789 Replies Flag this Response
  • Im a 19 year old, very active, college athlete and had been diagnosed with popliteal artery entrapment syndrome about 5-6 years back. It took half a dozens tests to determine it (MRIs, angio... but the treadmill test did it for me) I had both legs released, front and back over the past 5 years. I felt a bit better after a short time then felt the same charlie-horse like cramping on exercise, cold feet, and numbness. Last november got more testing including a pressure test and was diagnosed with the compartment syndrome as well. now almost 5 months after a double surgery still feeling the same pain..anyone have any ideas/advice. anything at alll??My son is also a 19 year old college athlete with bilateral PAES. He has surgery when he was 17 on both legs. They de-bulked his muscle about 25% in each leg to release the artery.Now 16 months later, one leg is doing okay; some pain, but the artery looks better than it did pre surgery, but the other leg is very painful and the artery is totally occluded and is at its pre surgery state. We went to a new Dr who wants to do the compartment pressure test, but I spoke to another Dr who said he is writing a paper on athletes who test with high pressures, but it is due to popliteal entrapment and not compartment syndrome. So basically if you fix the artery again, the pressures should subside.Unfortunately, my son will now be missing another season and this will put an end to his collegiate soccer career. He never returned to his full capacity, but came close, but having to miss another season will be too hard to come back from. The Dr at UCSF may want to do the compartment surgery in addition to the release surgery, but the Dr at Stanford who did the original surgeries, thinks that the surgery for compartment syndrome may be unnecessary if the high pressures are due to popliteal entrapment. Reading your post, does not make me feel very positive about his potential outcome.
    Anonymous 42,789 Replies Flag this Response
  • I have just started the process of getting diagnosed. I'm a 35 year old roller derby girl and just started having symptoms 4 months ago. Coaches thought I had Compartment Syndrome. Turns out I have a high baseline and then after activity it went done. Now the doc is refering me for an angeographm at Standford. I hope something comes of all of this. It just so frustrating to drop out of drills.My son is also a 19 year old college athlete with bilateral PAES. He has surgery when he was 17 on both legs. They de-bulked his muscle about 25% in each leg to release the artery.Now 16 months later, one leg is doing okay; some pain, but the artery looks better than it did pre surgery, but the other leg is very painful and the artery is totally occluded and is at its pre surgery state. We went to a new Dr who wants to do the compartment pressure test, but I spoke to another Dr who said he is writing a paper on athletes who test with high pressures, but it is due to popliteal entrapment and not compartment syndrome. So basically if you fix the artery again, the pressures should subside.Unfortunately, my son will now be missing another season and this will put an end to his collegiate soccer career. He never returned to his full capacity, but came close, but having to miss another season will be too hard to come back from. The Dr at UCSF may want to do the compartment surgery in addition to the release surgery, but the Dr at Stanford who did the original surgeries, thinks that the surgery for compartment syndrome may be unnecessary if the high pressures are due to popliteal entrapment. Reading your post, does not make me feel very positive about his potential outcome.
    Anonymous 42,789 Replies
    • August 12, 2010
    • 01:13 AM
    • 0
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  • I am a 30 year old female soldier who was wrongly diagnosed in 2007 for compartment syndrome, they went ahead with the surgery in 2008 and after re-hab nothing changed in fact my conditions worsened. I was lucky enough to be sent to have different test done and they found that I had popliteal entrapment in both legs.So now a week after my first operation Im wondering what Im suppose to be doing, havent been given any exercises or told to keep off it, so Im just carrying on as normal well shuffling around, dont even know if the stiches need to come out or are disposable so Im booked in to see my doctor monday.Does anyone who has had this operation know what to do post op, your help would be greatly appreciated, I dont want to overdo it and agrivate anything.
    Anonymous 42,789 Replies
    • August 21, 2010
    • 08:56 AM
    • 0
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  • Email me at bgknotwell@yahoo.com and I will try to help you. I've had both legs operated on for PAES and chronic compartment syndrome. Hope you are doing better. Just remember recovery is very slow. Frustrating, I know. :( I am a 30 year old female soldier who was wrongly diagnosed in 2007 for compartment syndrome, they went ahead with the surgery in 2008 and after re-hab nothing changed in fact my conditions worsened. I was lucky enough to be sent to have different test done and they found that I had popliteal entrapment in both legs.So now a week after my first operation Im wondering what Im suppose to be doing, havent been given any exercises or told to keep off it, so Im just carrying on as normal well shuffling around, dont even know if the stiches need to come out or are disposable so Im booked in to see my doctor monday.Does anyone who has had this operation know what to do post op, your help would be greatly appreciated, I dont want to overdo it and agrivate anything.
    bknotwell 53 Replies
    • September 11, 2010
    • 07:46 PM
    • 0
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  • Hi AllI am 52 and almost lost my right leg to PAES 5 years agoI suffered from night leg cramps all my life especially when I extended (stretched) my legsAfter a brief 3 month get fit by walking routine (ten years ago). I found my calves ached and I was unable to walk the shortest of distances. I was originally scanned with ultrasound with no result, the GP suggested it may be Compartment Syndrome. Nothing was done until 5 years later when I was lifting, I noticed a strange sensation in my right leg. I went to the same GP complaining of a cold right leg. Some how this was misdiagnosed and I battled on through a very busy work schedule for the next 10 days (yes stupidity). By the time I arrived at the hospital my foot had purple blotches on it. The surgeon introduced himself and gave me ten minutes to discuss the immanent amputation of my leg with my wife. I elected to call my sister (a Professor of Medicine) for her to discuss other alternatives with the vascular surgeon. I was wheeled to theatre where the Vascular Surgeon proceeded to clear my lower arteries and perform a bypass of my politeal artery. A few months later I had the muscle around my left politeal artery relieved. In my case the surgery was painful as I had substantial nerve damage to my right leg. I was also confused as whether rest or activity was the best for recovery as the leg was very swollen. My surgeon told me to walk as much as I could which definitely sped up the healing process.5 years later the legs are fine except for the nerve damage to the right leg which I am happy to live with - better than no leg (though I can't qualify for the disabled olympics - sick aussie humour)PS My surgeon told me it was hereditory
    Anonymous 42,789 Replies
    • October 1, 2010
    • 06:00 AM
    • 0
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  • Can you please also post your story on this thread? http://forums.wrongdiagnosis.com/showthread.php?t=29978 I think your experience can give some hope to others that are going through the same thing. I appreciate you sharing. So far I only have fatigue and some nerve damage so I am very hopeful. I, too, am happy to have both of my legs and the ability to walk again. :) Hi AllI am 52 and almost lost my right leg to PAES 5 years agoI suffered from night leg cramps all my life especially when I extended (stretched) my legsAfter a brief 3 month get fit by walking routine (ten years ago). I found my calves ached and I was unable to walk the shortest of distances. I was originally scanned with ultrasound with no result, the GP suggested it may be Compartment Syndrome. Nothing was done until 5 years later when I was lifting, I noticed a strange sensation in my right leg. I went to the same GP complaining of a cold right leg. Some how this was misdiagnosed and I battled on through a very busy work schedule for the next 10 days (yes stupidity). By the time I arrived at the hospital my foot had purple blotches on it. The surgeon introduced himself and gave me ten minutes to discuss the immanent amputation of my leg with my wife. I elected to call my sister (a Professor of Medicine) for her to discuss other alternatives with the vascular surgeon. I was wheeled to theatre where the Vascular Surgeon proceeded to clear my lower arteries and perform a bypass of my politeal artery. A few months later I had the muscle around my left politeal artery relieved. In my case the surgery was painful as I had substantial nerve damage to my right leg. I was also confused as whether rest or activity was the best for recovery as the leg was very swollen. My surgeon told me to walk as much as I could which definitely sped up the healing process.5 years later the legs are fine except for the nerve damage to the right leg which I am happy to live with - better than no leg (though I can't qualify for the disabled olympics - sick aussie humour)PS My surgeon told me it was hereditory
    bknotwell 53 Replies
    • October 1, 2010
    • 06:39 PM
    • 0
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  • Hi, i was recently diagnosed with compartment syndrome after the pressure test showed i had increases in my pressure, though borderline. I was then referred to have the PAES test which has come back positive. I am a soccer player who has played all his life at an elite level (im currently 18) and am looking to be a professional. What is success rate of this surgery in terms of fixing the problem and getting rid of the pain. I get intense calf pain in both legs whilst playing and have played through the pain for the past year. Also, what is the recovery time like? how long till you can start running again and such. Help is appreciated. Thanks in advance people x
    Anonymous 42,789 Replies
    • October 20, 2010
    • 07:36 AM
    • 0
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  • I just have the surgery one week ago. Itwas a much bigger surgery then I relized. Startied PT 3x a week only 3 days out to et my knee to bend. The nerves that they messed with--kill. The incision is larger then I thought. I have also has 2 compartment releases on this leg. Those surgeries are nothing compared to the pain of this one. I hope it worked and the nerves have not been damaged. MHi, i was recently diagnosed with compartment syndrome after the pressure test showed i had increases in my pressure, though borderline. I was then referred to have the PAES test which has come back positive. I am a soccer player who has played all his life at an elite level (im currently 18) and am looking to be a professional. What is success rate of this surgery in terms of fixing the problem and getting rid of the pain. I get intense calf pain in both legs whilst playing and have played through the pain for the past year. Also, what is the recovery time like? how long till you can start running again and such. Help is appreciated. Thanks in advance people x
    Anonymous 42,789 Replies
    • December 27, 2010
    • 03:15 AM
    • 0
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  • I was recently diagnosed with this syndrome in my right leg, this was after two false diagnoses(and two subsequent fasciotomies). I am having all of the above mentioned tests done this week, i was wondering if anyone had any advice for dealing with the tests and the whole process of treatment.
    Anonymous 42,789 Replies
    • January 4, 2011
    • 02:37 AM
    • 0
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  • i have PAES, i am very sporty, rugby and snowboarding i feel the pain the worst. i never really felt any pain till about a year after i crushed my right calf and that year i was running alot and was the fittest i'd ever been but i found it hard to run as i ran more often and i would walk 100m and get a dead leg but in the off season i walk that easily. i went to a specialist he said i could get surgery but it wasn't 100% success rate there was a chance it would grow back the same or get a blood clot and amputate my leg hearing that at 17 i wasn't to keen. When i go running i pass couple streams and i stop to put cool water on my calves and that usually stops the pain for a bit. I'm really consideriing surgery so i can reach my full potential but still undecided
    Anonymous 42,789 Replies
    • January 10, 2011
    • 10:24 AM
    • 0
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  • HelloI am 29 years oldI have popliteal entrapment syndrome in my both legsI have not gone to the surgery yetOne of my doctor said that you have enough collateral so you can wait for operation other doctor said that you should be operated as soon as possibleI have minimal symtomsIs there any person who have not gone to operation? How many times shoul I wait for the operation. I was confused.please tell me your experience
    drcihan 1 Replies
    • January 11, 2011
    • 07:11 AM
    • 0
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  • My son is also a 19 year old college athlete with bilateral PAES. He has surgery when he was 17 on both legs. They de-bulked his muscle about 25% in each leg to release the artery.Now 16 months later, one leg is doing okay; some pain, but the artery looks better than it did pre surgery, but the other leg is very painful and the artery is totally occluded and is at its pre surgery state. We went to a new Dr who wants to do the compartment pressure test, but I spoke to another Dr who said he is writing a paper on athletes who test with high pressures, but it is due to popliteal entrapment and not compartment syndrome. So basically if you fix the artery again, the pressures should subside.Unfortunately, my son will now be missing another season and this will put an end to his collegiate soccer career. He never returned to his full capacity, but came close, but having to miss another season will be too hard to come back from. The Dr at UCSF may want to do the compartment surgery in addition to the release surgery, but the Dr at Stanford who did the original surgeries, thinks that the surgery for compartment syndrome may be unnecessary if the high pressures are due to popliteal entrapment. Reading your post, does not make me feel very positive about his potential outcome.Are you able to provide an update regarding your son? My son is now 19yo and has been suffering (& I mean that very literally) for 4 yrs now with extreme bilateral lower leg fatigue. He not only had to forfeit his college baseball playing, but recently had to take a medical leave from college due to these symptoms and the physicians not able to make an accurate diagnosis. Two years ago he had anterolateral compartment releases in both lower legs, but got relief only from shin pain but the fatigue remains disabling. We are at the end of our ropes and no one has been able to help. Popliteal artery entrapment is now being tossed around but test results have been variable from one test to another. To make things more confusing two separate reknown centers tested his compartments again with one set of tests negative and the other positive. He has been worked up/tested for mitochondrial disorders, nerve issues (EMGs negative),...you name it! We would very much appreciate and welcome any advise, ideas, etc. Thank you so much for listening!
    Anonymous 42,789 Replies
    • January 27, 2011
    • 00:45 AM
    • 0
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