Popliteal Artery Entrapment Syndrome

[joyann]

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!

[Unregistered]

Hello Everyone,

I could not help but to post a reply.

There has not been one day that my calves were not in pain for the last ten years. I developed bilateral calf pain while I was in the Army and I was tested for everything that the doctors could think of except PAES. I had my compartment pressures tested I believe four separate times, bone scans, x-rays, physical therapy, and countless blood tests. The worse of all is that people thought I was lying at times. I had to get out of the Army because I could no longer run. Two years later I was diagnosed with PAES at the Mayo Clinic, Rochester, MN. The doctors did surgery on both legs but the pain still does not go away and gets significantly worse with exercise.

It has been very hard to give up on dreams of a more active life and jobs that require me to be active outdoors. I had to settle for an office job.

Overall, though, a little pain is better than not having any legs at all. There are many service members and members of society that are paralyzed or are amputees so I am thankful every day that I still have the ability to walk.

Have a good one, Mark

[22yearsofpain]

Hi. I have just been reading all above posts. It is very interesting reading each individuals experience. Let me tell you a little of my history.
At 23 years of age I was very athletic and played any sport and activity going. Started a job on a garbage truck which required a lot of running to and from the truck collecting bins from the footpath, emptying and returning to footpath. I very quickly got sore legs which eventually stopped me from putting pressure on my legs at all. At that point I was diagnosed with compartment syndrome and had subsequent interial faciotmy surgery on both legs. Recovery from this was very slow (3 months) and I never really had a lot of relief from the pain. I have lived with this pain for the last 22 years. I have revisited specialist over the years trying all sorts of treatment from pain management, physio, hormone injections, you name it.
I am now 45 years old, and 12 months ago My legs started to aggravate to the extreme. Again compartment syndrome was diagnosed and 2 months resting eased the pain. However as soon as I walk, mow the lawn, or try to engage in activity, the pain returns 10 fold. Finally a specialist sports doctor diagnosed me with PAES and I am about to have surgery on my right leg this week. I am trusting for a positive outcome and eventually pain relief.

[Jan P29]

Hello fellow sufferers,
in my own case, the popliteal entrapment diagnosed. Can you tell me how long after her surgery could you not go and when you can then re-run sport. Must know how long I have to take a vacation :-) Is it possible to operate both legs at once?

Thanks in advance

Greetings
Jan P age 29 years.

[Unregistered]

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??

0
I have! Same age, active college athlete (three season runner) In high school was diagnosed with compartment syndrome felt better after then came back. i had a gastrocnemius recession two years later for my complete lack of dorsiflexion. now i get numb and my legs turn purple when i run and recently they've been giving out on my during workouts. they thing i have PAES

[Unregistered]

Hello fellow sufferers,
in my own case, the popliteal entrapment diagnosed. Can you tell me how long after her surgery could you not go and when you can then re-run sport. Must know how long I have to take a vacation :-) Is it possible to operate both legs at once?

Thanks in advance

Greetings
Jan P age 29 years.

Hi,
I’ve recently been diagnosed with Popliteal artery entrapment in both legs as well and am interested in knowing the same things. There just isn’t enough information out there on this!
Michelle

[DougQldAus]

Hi. I have just been reading all above posts. It is very interesting reading each individuals experience. Let me tell you a little of my history.
At 23 years of age I was very athletic and played any sport and activity going. Started a job on a garbage truck which required a lot of running to and from the truck collecting bins from the footpath, emptying and returning to footpath. I very quickly got sore legs which eventually stopped me from putting pressure on my legs at all. At that point I was diagnosed with compartment syndrome and had subsequent interial faciotmy surgery on both legs. Recovery from this was very slow (3 months) and I never really had a lot of relief from the pain. I have lived with this pain for the last 22 years. I have revisited specialist over the years trying all sorts of treatment from pain management, physio, hormone injections, you name it.
I am now 45 years old, and 12 months ago My legs started to aggravate to the extreme. Again compartment syndrome was diagnosed and 2 months resting eased the pain. However as soon as I walk, mow the lawn, or try to engage in activity, the pain returns 10 fold. Finally a specialist sports doctor diagnosed me with PAES and I am about to have surgery on my right leg this week. I am trusting for a positive outcome and eventually pain relief.

June 2011 - I have had a PAES release done both legs now. Right leg was done in March and left leg just last week. I have had immediate relief from the constant pain I have suffered for the last 23 years. I now have excellent blood flow to my lower legs. I am not sure whether this operation will fix all the problems with my legs but at least I now can be confident the blood flow is getting through. My surgeon was very good and has done a terrific job. I have had minor tingling in my right heal due to nerve stretching or damage but is not significant to cause me any pain or discomfort.
I will continue to post progress as I gain mobility and begin to strengthen my calf muscles again.
After my first leg I had only 5 days off before returning to work. This proved to set me back in the end as I did too much walking and the swelling burst the scar open and then it got infected. I had to return to hospital for a further week to get the infection under control. Not a good idea to do too much too quickly. With the second leg I am having 3 weeks off work initially before seeing the doctor for advise on returning. Best to take as much time for recovery to be sure you don't cause more problems. Experience talking!

[Unregistered]

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!

Hi there,
Hopefully by now you're son has been diagnosed, but on the off chance. The ways to obtain an accurate diagnosis of PAES are Magnetic Resonance angiography with dorsi/plantar flexion (contracting the muscle during the test to compare blood flow of popliteal artery at rest and during "exercise") and an arteriography (to view the inside of the vessel). I was diagnosed in high school after a boat-load of tests by numerous specialists, had five releases (3 on Left, 2 on right-I was blocked above and below the popliteal fossa; bone, muscle removed) including bilateral fasciotomies (compartment syndrome secondary to procedures-scar tissue/edema trauma). I've always had my symptoms to some extent, including nerve damage from surgeries on my left leg. Within the past month or two they have gotten much worse. So I'm getting worked up, again. My concern is arterial trauma and the possibility of that developing (leading to artery occlusion, aneurysm, leg amputation). It's important to get diagnosed early, to get the popliteal release early before any damage could possibly occur. But it's still so uncommon, that I can imagine how many specialists you've seen with no answers.
Best of luck!!

[Laurence Hendrick]

[QUOTE=bknotwell;103610]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 inf

I feel for you man.I am 50 yrs old and will be having PAES surgery on the 12th of september,doctor said recovery time was about 3 weeks.I will have to have the same surgery on my right leg as well.Back to back probably a month to recover,good luck and God bless.

[cgz47]

Hi, Everyone!

I am Cengiz, 26 years old. 5 Years ago i noticed that my right leg gets tired very fast. Just 10 minutes later i start to play footbal or run , my right leg is off. But if i exercise very often, my right leg was getting ok. But now even if i exercise a lot, the tiredness on my right leg wont go.
1 month ago, after a football game, i have noticed that there is a temperature difference between my legs. left one was ok, but right one was very cold. This situation shocked me, immediately i went to the doctor. He said that there is blood flow problem on your knee. We must make doppler ultrasound. After this investigation , doctor has decided to make angiography. As as result of angio, i have been diagnosed with Popliteal Entrapment. He said that 'i must go under surgery. But i wanted show my angio results to another doctor. This time i went to prof.dr. who is very good at his job. He examined me and said : your leg looks healthy, the color, hair on the leg were ok.
And even your artery is completely closed, your capillary(colateral) veins feed your bottom leg(under the knee).
You dont have to go under surgery, your leg wont be cutted , or gangren because of paes. '

But i read so many articles, all of them are saying that the only treatment is surgery!

I m confused what to do. can smo help me ? any idea