Knee Contractures – 12 y/o boy

    • October 1, 2013 at 3:30 pm

      My son was diagnosed with GBS this year at the end of April. I joined this site at that time. His progression was very slow (from start to signs of improvement took 10 weeks) but the Dr’s are sticking with the GBS diagnosis. He was hospitalized for 2 1/2 months, no breathing issues what so ever but SEVERE weakness and pain. He went through inpatient rehab twice, first for 10 days after his first IVIG treatment then when he got worse he was readmitted received plasmapheresis, IVIG and a second stint in the rehab unit for 30 days. The Doctors don’t even think that any of the treatments helped and the GBS just ran its course.

      While he has made gains in his strength our biggest issue at this point are contractures at his knees. He is unable to get full extension and has off the charts pain if someone tries to force his legs straight. He is wheelchair bound and while he has gotten very small movements back in his ankles and a twitch or two in his toes he wears AFO’s whenever he is awake.

      When this nightmare first started mid-March one of his first symptoms was the inability to bend at the waist or straighten his legs unless he was flat on his back. When we left rehab after the first 10 day stint he could still keep his legs straight while flat but within the next 3 days before being re admitted the pain was so bad he would bend them up and was unable to push them out on his own. We would move them for him but were unable to get past a certain point with out him screaming in pain. The Dr’s told us that as his strength improved the pain should resolve and the stretching with PT and at home would work the contractures back out. After several months this hasn’t happened and while he can take several steps supporting himself at the parallel bars he is in a bent leg position and on his toes with the AFO’s while doing so. Now the orthopedic surgeon he saw says if we can’t get him straight by December they may have to do a hamstring lengthening and take a section out of his femur to shorten his legs as they think the nerve and vascular bundle may have shrunk. Also his PT’s are ready to release him since they don’t think his function shows much improvement.

      Has anyone on these boards experienced contractures? Everything about my son’s case has been atypical and the Dr’s just keep saying “we don’t know, we will have to see what happens”. Meanwhile his BP is still high, his “weakness” tremors seem to be getting worse not better, and the pain with his tightened hamstrings has not been addressed…Oxycodone during PT seems to be their only choice and it does relatively nothing but make him nauseous. HELP! We are so happy to have him home but so afraid we are missing something and while we wait for his nerves to regenerate we should be doing something else.

      Any help, advise or push in the right direction would be appreciated.

    • GH
      October 1, 2013 at 5:15 pm

      I am very familiar with leg pain problems of this type. When my CIDP was active, i had considerable pain and was medicated for it. I was able to stop pain meds when I began to recover, but still had significant pain when my legs were moved in a way that strained my muscles. I, too, could not put my leg flat in a fully extended position, but this eventually was worked out with physical therapy. I was fortunate to have had an excellent physical therapist at that time (and several others earlier). I spent eight weeks in therapy hospitals before coming home, and probably reached full leg extension at about six weeks.

      I can’t diagnose your son’s case, and don’t know what type of PT regimen he is following, but my feeling generally is not to give up on PT too readily. It was extremely important in helping me make the best recovery I was able to.

      The key to restoring leg extension is not to force it straight to a point which cannot be tolerated without pain meds, but to bring it slowly and smoothly to the point where there is tolerable pain, and to hold it there. This needs to be done every day. Eventually, it should stretch out with proper technique. A surgical solution seems extreme to me and I would seek additional opinions before taking this route.

    • GH
      October 1, 2013 at 5:31 pm

      By the way, on rereading your post, it strikes me that your son’s case is remarkably similar to my own atypical case. I was initially diagnosed as GBS, but never developed breathing impairment. I, too, took about ten weeks to reach maximum weakness and begin to recover. My total time in the hospital was 18 weeks, of which the last eight were in rehab units. My diagnosis was changed along the way to CIDP, but it’s just a name as far as I am concerned. My case is more similar to GBS than to relapsing cases of CIDP, as it was relatively quick to develop and I have seen no indications of relapse. This last point is crucial. Are the signs of progressive weakness gone? Is your son slowly recovering strength? If so, I don’t know why he should not make a better recovery. My legs were at zero strength for weeks, the muscles were atrophied, and there was great pain if they were moved outside of a narrow range. Today, the contracture and foot drop issues are gone, and I walk without assistive devices, if imperfectly. Don’t lose hope!

    • October 7, 2013 at 12:58 pm

      Thanks GH for the encouragement. He has gotten a lot of strength back..sometimes it is hard for us to judge how much but looking back at where he was I know it is improving even if slowly. We haven’t seen any sort of relapse of the weakness other than the tremors he has seem to have gotten slightly worse in more areas than just his hands. We are going back to neurology this week for them to re evaluate that but I doubt they will have much insight. I am also getting him into a Physical Therapist that works more with viseral manipulation, myofacial release and even some Cranio sacral therapy. I feel that the exercised based rehab he has had for the last few months has helped to increase his strength but we have gotten no where on the contractures so before we take the scary step of leg shortening I want to give the slow hands on approach a try. We have to pay out of pocket since they don’t take our secondary insurance and our primary has reached its cap of treatments for the year. I think I may press to also stay with at least the Occupational Therapy part at the place he is being seen now as he does have a lot of trouble with the fine motor skills and we want to keep working on that.

      One odd thing happened yesterday that I wondered if you, or anyone reading this had experienced? When Chad got up in the morning he started to complain about a pain in the top/side of his foot, within a few minutes it was so painful he was crying. I tried rubbing, heat, elevation (which helped the most) and Aleve. After 30 minutes or so it calmed down and oddly enough we noticed he could move his toes quite a bit on that foot! He has had no more than a twitch before that. Is it possible that the pain was the nerves making that “final” reconnection? Has anyone heard of anything like this…it was so odd…but we are very happy to see movement in his toes again!

    • GH
      October 7, 2013 at 2:32 pm

      As the nerves heal, there are definitely new pain sensations that come with it. I usually experienced these as sharp “zings” like being sliced with a knife. It takes some getting used to. I still have some of these, but the intensity has lowered. As long as his strength is holding up, take it as a sign of healing.

    • November 22, 2013 at 3:27 pm

      First of all I wish that your son get healthy soon. The main factor to restore leg extension isn’t to force it straight to a point which is not possible to undergo without having painkillers. It will definitely take time and your son has to face some pain. The best way is to do regular exercise staying in limits and not push too much, you should stretch it as much as he can tolerate and hold it for 1-2 minutes. Eventually, it should stretch out with the right technique. I would definitely no recommend any surgical solutions for it.