ACLr/Compartment Syndrome/AF/Peroneal Nerve compression

[kcknee]

If I hadn't felt effects from the Graston so quickly, I definitely would have run and not returned. I'm dreading the chiro approach in next week's appts more than the pain. He said he is going to up the treatments by using heat and then having me hold my leg flexed in different positions instead of just flat so he will have better access to all the muscle fascia etc. I'm not sure if the muscles can handle this w/o spasming. Good thing that I have left over pain meds to take after or maybe just before the appts. - which could help me zone out through all the lectures.

The ankle seroma is a lot smaller which is definitely helping with walking correctly. My leg feels much looser and is moving a lot easier. It doesn't feel as solidly swollen.

We walked around my son's summer camp yesterday and around a carnival last night with much less stiffness and pain than I usually feel. I did have a lot of bone pain last night and the bone is still aching today, but not as much muscle pain. I'm hoping that in time the bone pain will go down.

Kristin

6/18- Had my 4th Graston appt. today. He was pretty shaken that I have a third hole in my leg now from Friday's session. I went over again how the skin was pulled too tightly to close... seromas/hematomas and mushy purple blood blister skin... skin too thin and obviously can tear easily... last time took 6 months to heal. He used the heat and was aggressive but not nearly as hard as Friday's treatment. Leg is definitely moving easier. I even played my son in basketball for a few minutes after the treatment.  I only had my hips adjusted today and no lecture. Paying for the basketball game, swelling over bone and pain.

[kcknee]

My chiro thought it was great that my leg felt loose enough to try to play basketball, but agreed it was really stupid that I did. Over the bone was still swollen and 3rd hole still open, but closing, so he only did Graston on parts of my leg and did manual therapy around ankle. Except for the bone, leg is feeling a lot better.

K

[kcknee]

I'm not sure if it means my leg is now in a better state and healing better or if it means the two holes were something worse, but the third hole has healed already. That meant more intense Graston again tonight. He has a classical music station on all the time, so I told him I'm going to be conditioned for the rest of my life to expect pain whenever I hear classical music - kind of like A Clockwork Orange.

Leg is moving well, but bone throbs and hurts to touch the 2 spots. Before only the lower spot hurt to touch.

Kristin

[Snowy]

Overall, this is still sounding really positive. I wouldn't let up on getting whatever is causing the bone pain diagnosed, but the difference between how you're feeling now (basketball!!!) and the limitations you've had through the rest of your surgeries, it sounds as though you're in a better place now than you've been for a long time.

Fingers crossed that things continue to progress well...and do press for a bone scan if the pain in the bone continues. It's not worth taking a chance on anything given how much you've been through to get to this point.

[kcknee]

Leg survived an 8 hr. round trip drive to my parents' house and a day of playing with kids in the pool this weekend. My ankle swelled up a lot and my bone hurt, but the muscles did great.

I don't fully understand if it is actually the painful Graston therapy that has somehow loosened up my leg or if the painful therapy had tricked my mind into thinking it must be working, but either way I can walk around again so it's a good thing. Today's Graston was uneventful, but I got to see the chiro flip out on Friday when he thought he had torn open one of the holes. Thankfully it was just a small tear but he had a panicked look and pulled out this giant magnifying glass to assess the damage. As my cousin said this weekend, the holes don't look so much closed as dormant (I know that's probably just because they were open for so long and are still hopefully healing). There is a cloudy grayish covering over the still indented surrounded in red holes; no leaking though.

Why does every OS or other specialist I see always try to ultra simplify what has and could be happening in my knee/leg.? The chiro's latest is to talk on and on about sprains and how it is common to have bone pain and he sees it a lot with sprains, especially ankles. As the swelling goes down in my ankle, the throbbing bone pain should go first but with sprains it is common for the bone tenderness to remain for a long time.  That would be great, but a sprain is one of the few things my poor leg has not gone through. I am going to wait until after the Summer to see if the bone pain starts to go away as the adhesions in my leg are broken up.

K-

[kcknee]

Strange nerve tingling in 2nd and 3rd toes since the morning. The large swelling lump over the bone came back this afternoon so I'm assuming the swelling is pressing on the nerve. Could be a delayed response to the weekend activity.
K

7/7- Ankle seroma has almost completely disappeared. Chiro is thrilled and promising me I will not need surgery on leg ever again. I told him I sincerely hope that and will do all that I can, but until the bone pain stops I can't trust that this is really over. Swelling over bone has reduced some and tingling has stopped. Have not had cramping down leg to big toe in over a week. Graston tonight was a lot of work right over the tibia bone. Very painful. He asked if I could handle it and I told him he still hasn't caused as much pain to my leg as others have so keep going if it will help.
7/9-Bone woke me up throbbing last night. Painful to touch today. Not a lot of activity this weekend, but did have Graston over bone on Friday.  **Chiro said today that Graston could not cause pain to start days later in tibia. He started doing Graston on soleus muscle and around ankle.
7/11-Graston still working great. On flat surfaces my leg is back to where it was at 6 weeks after the last surgery when I could walk around Disney without much muscle pain or limping. Stepping over the mess in my son's room I found that the peroneal muscles still tired almost immediately and aren't recovered enough for that yet. I showed chiro how I had lost strength last Fall to lift 4 lesser toes without effort and he said he would start me on exercises to help. Now if only that bone would stop hurting.
7/12-Leg feeling overall achier today. Have had over 100F slightly elevated temp on Advil over the past 2 days.
7/13-Was able to stand for several hours to watch finals at son's basketball camp. Leg was swollen and tight, but I could do it. Then had to endure visit with in-laws while they kept trying to get me to commit to a trip to Utah to go hiking in the canyons. They can't see why a hiking stick shouldn't solve everything and felt I was trying to ruin their family vacation planning. I couldn't get them to understand that I'm not worried about instability, my damaged muscles stop responding after too much exertion and I could get stuck on a trail having to drag my leg. Temperature still slightly elevated and bone pain unchanged.
7/16- toes tingling and sharp zapping nerve pain for about 10 minutes by holes. Chiro did Graston across top of foot and toes.
7/18- chiro had me stand with knees bent and muscles activated to do Graston. Able to loosen scar tissue indenting my tibialis anterior muscle since weekend. Tingling less.
7/19-awoke to bone pain. 
7/20 - Chiro writing update to Sports Doc on my progress. I have not told him about return of low fevers because didn't want to start all the nutritional/supplements lectures again. Graston over holes today.
7/22- holes withstood Graston without tearing open this time so must be healed inside more than they look.  Played  basketball in pool. Strong snapping pain down back of calf when did a slam dunk. Only jumped off of good leg but I must have overstretched bad leg - held foot at 90 degree angle to protect from overflexing while playing so all stretch was to back of calf. Very painful and had to stop playing, ankle now all blood bruised. Probably scar tissue tearing. Temperature back to normal.
7/23-Over-stretching in pool causing strange symptoms. Maybe stretched a nerve that may have been in scar tissue. Lower leg aches in back of leg up to behind knee and peroneal muscles stinging, Leg and ankle feels stiff. Had night sweats last night from lower leg through foot. Bed felt like someone had poured a bowl of water on bed where lower leg had been.
7/26- Nerve symptoms settling. Still slight ache behind knee. Chiro said he hasn't directly gone over holes yet since skin is still too thin but is getting closer. I think he was trying to see if I would notice when he did Graston over tibia. It hurts even shaving my leg over the the two sore spots on the bone. I guess he thought I would yell out if it hurt instead of just taking the pain. He started me on exercises to work peroneal muscles. Stand with only front of feet on edge of stool and raise up on toes and then lower heels slowly below stool height, hold and then back up. Two sets of 15 - had to stop and walk fatigued muscles between sets and only did 10 of last set before muscle just quit. It's tough to see when walking and stairs are back to being easy that I am still so far from normal. Leg tighter today from exercises but no CS symptoms.
7/27- My son & I are going to my parents'  house for a week to relax and swim in the pool. Chiro told me to try not to get hurt. His asst. commented that my leg was so much better than when I first came in when it was "not just swollen, but abnormally shaped and bumpy". Hopefully it doesn't stiffen up a lot with a week w/o chiro.

[kcknee]

I'm still not sure if I am having a very bumpy slow road to "recovery" or if there is something else wrong in my leg.

Vacation was great, I mostly relaxed in the pool. My ankle and foot turned bruised purple nights, my leg felt swollen and tight and my peroneal muscles were extremely painful when used accidentally to swim in pool, but I think all that is just breaking scar tissue and damaged muscles that hopefully will mostly recover over the next year or so. I can walk on flat surfaces fine and am trying to increase time walking before muscles tire, but can not step over objects without muscle pain and almost immediate muscle fatigue. Stairs are okay unless muscles are fatigued.

The tibia bone still hurts to touch and will throbbing ache some nights and at times just has that hollowly deep bone ache. The holes have started stinging a lot in deep and at times feel like fresh wounds even though closed. I've had nerve zaps (like ncs testing) down by holes the past few days. Chiro says skin still extremely thin over holes. Holes do not hurt to touch so could be just nerve recovery. Low fevers started again the other night, but no night sweats.

I'm just going to keep going with Graston and slowly increasing my activity and see what happens.

Kristin

8/16- fever now normal again. Yesterday had to stand on hill for 30 minutes waiting to get in to son's camp show and had  "bee sting" nerve pains down by the holes during the show, not as frequent today. Leg muscles and bone very sore rest of day. The puppy has grown into a giant 90 lb. dog and rests his massive head on my leg to beg when I'm in the recliner chair. The pain in the bone is intense when he puts his head weight on the bone. It feels more like I just forcibly slammed my shin bone into the side of a coffee table rather than like a big dog gently resting his head on my leg.

[kcknee]

I'm going to see if the Sports Doc will do another x-ray of my tibia. He has the x-ray from I think it was about 6 weeks after I first started feeling the bone pain. That x-ray had shown that the bone was thickened in the two spots that it hurts. Comparing that to a new x-ray could show if the bone changes have increased over the past few months. If so, I could go to my OS with the x-rays, or another OS if he won't believe me. If nothing has changed between the two x-rays, I'll wait longer and see if the bone pain stops increasing and maybe starts to go down with more time. If it is still getting more painful, then in a few months I'll see if the Sports Doc will order the bone scan then. I know I can't go to an OS with just saying my bone hurts without proof that there is a problem.

Kristin

[Snowy]

Damn. I'd missed your last couple of updates, so I'm really sorry to hear that the bone is still hurting and causing problems. I definitely think you should pursue this, because every time you've had a gut feeling that something isn't right time has proven you correct. Hopefully whatever this is isn't a major issue, but it's definitely worth pushing to find out what's causing it. Pain doesn't happen for no reason.

Does it feel like the other parts of the leg are still improving, even though the bone pain is persisting?

[kcknee]

Hi Snowy-

Thanks for posting. I mostly have been adding to my prior posts instead of creating new posts to log what's going on, so everyone doesn't get bothered with notifications each time.

Muscle and  nerve-wise, my flat walking is limited but okay. Stairs are usually fine. Standing for any length of time is not good. Probably because with the muscle fascia all cut open it is harder for my body to pump the fluid out so it then presses on the damaged nerves and muscles. I have a lot of nerve symptoms (zaps) down by the holes and deep muscle pain after too much use. Uneven surfaces are not good at all. It's tough because I'm coming up on a year since last Fall when I felt all these muscles and nerve connections being damaged and I haven't really improved that much. In fact, I'm thrilled that the Graston therapy has gotten me mostly back to where I was 6 weeks after the last surgery. I'm not sure how much more improvement I can realistically hope for.

The symptom that I'm worried about is the bone pain. I had hoped that as my leg loosened with the Graston, anything pressing on the tibia would also be loosened and the pain would go away. So far that's not happening and the bone tenderness is a lot worse.

K-

[Snowy]

Ah - I rely on the notifications to let me know when new posts are up, so that probably explains it.

All of your symptoms make sense given what has been done to your leg, but it's too bad that they haven't made more progress. You may have already investigated this possibility (I know how diligent you are about your leg), but would it be worth trying to find an expert in muscle damage/nerve issues who might be able to suggest some alternative approaches?

The fact that the bone pain hasn't improved even though the leg is looser definitely supports your instinct to keep pursuing this. The Sports Med doc sounded really sympathetic and understanding - he might be your best bet for keeping things moving forward, even if it's slower than going through an OS directly. At least if he's willing to order the bone scan you'll have evidence of whatever's going on.

I guess it's not unsurprising that recovery hasn't been smooth given how much your leg has been through and how long it took to get the surgery that opened all the compartments, but I so wish that it had been - nobody deserves a break more than you do.

[kcknee]

The chiro today was commenting again on how the thin the tissue over the holes was and then said well they made those same incisions 4 times so it just heals slowly. I had to reexplain to him that only the straight incisions were made by the surgeons during the fasciotomies and the holes had formed when a hematoma formed after the last surgery next to the incision with subsequent blood blisters. The holes are the burst blood blister holes that after the hematoma bled out, continued to leak pus etc. until June and are an added bonus of the surgery and not a surgical incision themselves. He looked shocked as if he was hearing this for the first time- I wish doctors would listen to me, I don't lie to them and try to give an objective report of signs/symptoms.

I had an EMG/NCS in the Fall when things were first getting really bad again. I was going to try to get another at some future point to see what muscle/nerve damage there is in my leg so I can be careful as I hopefully can begin to get more active. I don't know what kind of Dr. could help me now. A neurologist could tell me the actual damage, my PT tried to help but we gave up when the tibia started hurting and a physiatrist from what I know is more on how to live with a disability and not to recover from it.

I stopped wearing an ACE bandage on my leg in April when the bone pain became worse with pressure. The bandage had helped with fluid in my leg. I'm going to try to wear it again if I can handle the bone pain and see if it helps the nerves and muscles. Except for causing pain, I don't think it will cause further damage to the bone. 

Kristin

8/28 - I haven't talked to the Sports Med Doc yet. I have been trying to find other explanations for the bone pain. Shin splits(medial tibial stress syndrome) cause more diffuse pain than my 2 areas of highly localized pain (although painful spots have increased) which also showed up as 2 distinct areas of bone thickening on the earlier x-ray. My muscles and their connections to the tibia bone are obviously majorly stressed, but the connections are not located on the spots the bone hurts. Stress fractures are still possible.

Both stress fractures and osteomyelitis are both diagnosed by bone scan so I should talk to the Sports Med Doc, but I just don't want to have any more tests or deal with any more doctors. If I get the x-ray done and it shows more changes I would be forced out of this avoidance mode and I'm not mentally ready to start fighting yet again to be believed.

[kcknee]

8/31/12- today is the 3rd anniversary of my ACLr surgery. I was so sure then that I was going to recover quickly. My leg was really strong going into surgery, I didn't lose my quad strength following surgery and I was about to start an aggressive rehab program that would have returned me to skiing by NYE 2009, the one year anniversary of my ACL tear. I was back in my office at work 4 days after surgery and seeing my PT 3 nights a week with jumping and jogging scheduled before Thanksgiving.

All that unfortunately changed about 3 weeks after surgery when I began to get the symptoms of compartment syndrome (I had never even realized that the lower leg had compartments) and has taken the last three years and 5 additional surgeries to finally successfully end the recurring compartment syndrome and the AF that had developed. It is still strange to see that since stopping the beta-blockers all the signs of AF in my knee are gone.

My ACL has been great and stable since the surgery but I still have a long road ahead of me to try to get my muscles and nerves to recover from the damage that occurred from the high pressure over the last 3 years. I'm still hoping that the pain in the tibia bone stops on its own and will not end up needing to be treated.

Kristin

[kcknee]

I had a busy long holiday weekend including my son's 2 day soccer tournament which involved a lot of walking mostly on slopes and uneven ground. My leg swelled a lot, the muscles were very fatigued and sore and I have not slept much the past few nights due to the deep pain in my tibia, but I had a great weekend.

On Friday the chiro finally understood that my tibia pain only started in April and had not been part of the ongoing compartment syndromes. He started today's session asking me about how the bone had been. He then wrapped both hands around my lower leg and pressed in hard around my calf and up the length of my tibia which I hope he never does again. He said that the area around the ends of my tibia and fibula felt tight so he did a lot of deep manual therapy on the ends of the bones followed by Graston to that area and then a truly sadistic therapy that involved him sticking his fingers into my tibiofibular joint and forcing me to bend my leg around them Extremely painful and still moderately painful almost 6 hours later. My joint I guess does feel a little looser. He also used heat and e-stim on the tibiofibular joint area. The hope is that if the tibia pain is from altered exertions on the bone that maybe this could help.

Kristin

9/7 - had next Chiro appt. today. Told him I have been in pain with an inflamed leg since last appt. and had almost resorted to crutches a few times. Too aggressive too quickly w/ the new therapy. He agreed to only work on muscles and then gripped my leg and started pushing/jamming the tibia/fibuila joint again. I think I'm taking a break from the chiro until the joint settles.

[kcknee]

My leg wasn't as swollen today as last week. so I went to the chiro today. He didn't touch the tib/fib area but was pressing up and down the tibia before he did the Graston. I asked him if he thought that once I get my leg stronger if it would be a good idea to get an AFO leg brace for foot drop to use only when the muscles/nerves become too fatigued to work. Maybe that way I could still do hikes if I strapped that on when my muscles stopped responding. He gave me that same really strange look that my 2nd OS used to give me when I came up with a new theory or idea for the recurring CS /AF. He then said he wasn't sure and I should discuss it with the Sports Med Doc. He was afraid that using it for even a few hours on a hike after the muscles quit could cause more damage and cause the muscles to shut down. He was really surprised when he tested my muscles, by having me dorsiflex my foot first with no resistance and then with resistance, and the muscles started to stop responding at the end of the resistance set and he saw I was actually telling him the truth. I now have sets of doriflexing my foot added to my chiro homework. The bone pain/tenderness is still the same.

Kristin

I'm not going to PT at this time, but asked my PT what he thought of using an AFO when the muscles stop responding. He seems to agree with the chiro, so I guess I have a long wait before I can go hiking again.  The textbook says you should never use an AFO when there is any muscle activity in the lower leg.  It would cause the muscles there to shutdown.  So, I wouldn't recommend it.  It could weaken the leg in the long run. Instead, the better choice would be to continue to progress with a walking program designed to slowly increase your endurance. 
Staying on level surfaces for the most part.

I might have another possible solution that might allow me to do more with my family. There are collapsible crutches that collapse down to 27"-29" that I could attach to the outside of a backpack at the beginning of a hike (only on trail paths) that would give me the security in knowing that I could get myself off the trail when my leg muscles stop working.