Severe Chronich compartment syndrom keeps coming back! I need help!
I am a 34 year old formerly very athletic and healthy male. I had always experienced severe shin pain when running since i was 10. I was always told it was "Shin Splints". I went to many many doctors who said I had "Growing Pains", "Shin Splints", or that "the pain was real because it was in my head". My pain level was SO INTENSE! I felt like I was walking around on two broken legs. The pain would last for WEEKS. Numbness, Tingling, and so on. No doctor could EVER help me. Imagine someone smashing your legs with baseball bats at night then waking up in the morning and walking around. That is EXACTLY what it felt like.
In 2010 I barely made it into the Army with absolutely horrible run times and constant icing (Literally laying in a bath tub with bags of ice for my legs) and days of rest after exertion I had hoped I would be able to serve my country and at the same time the Army would be able to solve my leg pain dilemma once and for all now that I was "Government property". Well the Army tuned out to have even worse answers than anyone else and they did a bone scan which saw MASSIVE bone irritation. They were absolutely clueless. I was on crutches for BOTH legs simply to support my body weight and assist in walking. I was about to be assigned a wheel chair when I took a medical discharge.
As soon as I got it out in 2010 I saw an entire slew of Doctors who kept passing me off to others. Finally I came to Yale and saw Dr. Karen Sutton. She heard my story and said "I think it's compartment Syndrome". I said that i doubted it because it would have been diagnosed years ago had it been. She did the test with the compression needle and my numbers that should have been at 15mm in my legs were at almost 100mm. She said no one had ever seen numbers as high as mine and they were afraid that I would need amputation if the compartments weren't released immediately. I required immediate surgery (fasciatime) on BOTH legs and had ALL of my leg compartments opened and released. After the surgery i had a massive amount of fluid build up. My legs had to be drained of serous fluid once a week for about 6 weeks.
A few weeks later after i started using my legs more as healing progressed, the pain started to come back.
Everyone seemed to be in dis-belief and it took about 6-7 months for my doctor / surgeon to do another compression test. Sure enough the pressures were BACK UP to almost 60-70mm. The pain was becoming unbearable again and EXACTLY one year to the date in 2011, another surgery was performed. Once again the Serous fluid would not leave my legs and needed to be drained. I saw two Venous and vascular doctors and they all said my vascular system seemed to be fine. They weren't sure why the fluid was not being absorbed back
As with the first surgery the pain started coming back within weeks of the second. This time it was more located at the front of my shin. I would have SWORN there was something folded up under my skin. After insisting to my doctor something was not right, they did another test, (only on the left leg as it seemed to be the worst of the two) and pressures were heading back up rapidly.
About 2 months after the second surgery, my doctor then performed a third surgery and pulled a large amount of scar tissue from the left leg and they also had me stay in the hospital for 3 days on a wound vac to suck out the fluid and keep it dry. The fluid did slightly build up after but only needed one or two drainings.
Once again....about a month or so the pain returned. In Sept of 2012 I had ANOTHER compression test done ONLY on the left leg and all the pressures are heading back up to 60mm+!!!!! My doctor said i needed a FOURTH SURGERY! She then got back to me a few days later and said she was was not convinced this was not a vascular issue so I went to see ANOTHER vascular Dr. and he too said all tests showed my system was fine. My doctor now does NOT want to do a fourth surgery on my legs and I am in serious pain all the time. I have seen Neurologists, Orthopedics, Sports Medicine, General doctors, you name it!! NO ONE can seem to find why my symptoms keep coming back! I had a Neurologist tell me today he didn't even think it was compartment syndrome. He said it could be a muscular Disease. But he didn't seem to know where to send me.
I really need some help! I have three kids and my two sons have Autism. My youngest son has SEVERE AUTISM and will be in my care probably his entire life. I run my own business which I am now being forced to close as the pain keeps me from being able to hold normal business hours !!!! I cant afford to wait around anymore for doctors and risk amputation or to be an invalid. I need help FOR MY CHILDREN'S SAKE!!! I seriously need some medical help now!! I just came across this site and read a woman ( Maria80386 ) had the EXACT same symptoms as I did and she was in the same issue!!! So here I am pleading for someone to help me!!
This appears to be a very peculiar case. Well, usually the acute/ sub-acute compartment syndrome follows an injury while chronic cases of compartment syndrome are often caused by muscular issues than primary vascular causes. A specific type of the chronic compartment syndrome is the ‘Chronic Exertional Compartment Syndrome’, which is associated with chronic strenuous exercise more commonly occurring in military recruits; while hypertension/ high blood pressure or lymphatic blockade may further complicate the situation. Management would usually involve a fasciotomy and recurrence is rare to occur and still rarer after a second surgery. In rare cases such as yours repeated surgical decompression may be required, while alternative diagnosis may also be re-considered and conservative approach such as rest, anti-inflammatory medications, discontinuing sport activities, assisted weight bearing, avoiding limb elevation, maintenance of hydration and normal blood pressure etc followed. I would suggest considering a detailed evaluation by an orthopedician and an internist at a university/ teaching hospital for a detailed evaluation and suggestion of an appropriate management plan.
Hope this is helpful.
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