Chronic compartment syndrome

If the pain is nerve related have you had your B vit levels checked. 

They can be low and responsible for pain you described. 

Hi Jw454,

At last I have found someone else who has the same problem as me. I have had this ongoing for nearly 5 years and 12 operations later I am no better off than when I started BUT there is hope. My CS started out like yours where I had pain at rest as well as not being able to walk more than 10 mins without being in terrible pain. The part doctors don't like to hear is the "pain at rest" because compartment syndrome should only happen with movement. I have had 3 different surgeons because the first two said it's all in my head because there should be no pain at rest, DONT LISTEN TO THEM. I was taken to hospital because of the pain and after 36 hours they took me to surgery and did another pressure test which was 38, I didn't move a muscle in 36 hours and the surgeon just can't understand why so it does happen with rest trust me. I have had a split skin graft on my left leg to try and stop the scar tissue joining back together it's on the anterior and lateral compartments which didn't help a lot to be honest. Before that operation the surgeon removed a strip from the same compartments which was 50mm across, 250mm long and 10mm thick of scar tissue. The fascia should only be as thick as Christmas wrapping paper. No one can understand why this happens but I have a couple of reasons why. Do you get tonsillitis or a lot of sore throats? I've had chronic tonsillitis since I was 6 and one doctor who has never given up trying to help me has found a link. Because of all the constant blood infections through the body it some how affects the muscles and has caused a lot of acute and chronic compartment syndrome which they have no idea why. I am booked in to get mine out in a couple of months so I will let you know how I go. I was told for years to wear compression stockings/tights but I never really gave them a good try and only wore them through the day but I changed to wearing them when I went to bed and I went from not being able to stand or put pressure on my feet in the morning to being 99% pain free, they really worked for me so give them ago if you haven't already. I only wear the ones that go from the knee down and have a strap under the heal, I am waiting for ones that cover the foot and up to the knee. I strongly believe that circulation plays a huge part with the pain at rest because for some reason it gets cut off when we lay down and then causes the compartment syndrome. I have started seeing a Osteopath which has also help massively because a lot of what they do is work with fascia, all of our muscles are surrounded in it and they know how to soften it and unwind it which really helps. Also Google John Barnes myofascial release which is all about fascia and how to basically melt it and soften it to how it should be. Try and find a YouTube video that's called "Corn starch and water fascia" it's a group of people sitting around the table talking about it, it really explains what is happening. These are the main treatments I have found that really do help, please don't ever give up and feel like there isnt any help. You need to find a doctor and a surgeon that are interested with what is happening and not ones that just want to do the op and get paid and think every thing is fine and if it's not then it must be in our heads, these people you must steer well away from because they will make you feel terrible. It is very important to stay positive and believe there is a cure somewhere. I went from compartment pressures of 86 and 82 in all compartments in both legs to around a constant 20 which is still to high and gets higher with exercise but you need to know your limits and don't over do it. Find a youngish ortho surgeon who is keen to learn, I have found them to be the best. Do you get the same kind of pressure feeling in your forearms or quads? If you do don't get any operations done because it is an underlying problem causing it like your tonsils. If you have had them removed all ready then what I've said will be no good for you but if you still have your tonsils do some research and take it to a doctor that will listen and see what they think. It might take seeing a few different doctors to find one that will listen but keep trying. So look up about the tonsils, John Barnes myofasical release, osteopath, and the compression stockings is a must at night. Please feel free to contact me as much as you like because it makes a huge difference to talk. One more thing only see sports Orthopedic surgeons or ones that have a army background. Good luck and stay in touch.

Cheers, Carl

Also the pressure tests are awful so MAKE SURE they NUMB the area first and take a deep breath and close your eyes. I've had 6 different tests done and they are awful. Just wanted to warn you that some wont numb the area first so make sure to ask. 

I just wanted to follow up. I had Compartment testing done and it was normal. And not painful at all. I just had another MRI and they feel like I have a hernia that is located in my anterior tib muscle. I am having surgery feb 13th. I will keep you all posted.