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    Upcoming surgery for Myositis Ossificans

    Last October my upper right quadricep began to swell up massively, and after several days in the hospital the team determined that I had a massive hematoma resulting from an internal bleed that, of course, probably resulted from taking blood thinner far longer than was necessary after a blood clot I suffered while in the ICU in 2018. A month later, the swelling continue to increase and I went back, where they found that the hematoma had begun to calcify into Myositis Ossificans (MO), which I was told is somewhat different than the Heterotopic Ossification (HO) usually experienced by folks with SCI.

    Now, 9ish months later, I'm scheduled for orthopedic surgery to remove the ossification at the end of August. I must admit that it's been pretty terrible in that I can't bend my hip beyond about 100?, which has really restricted my ability to be active, transfer, dress myself, etc. It also forces me to sit really cockeyed in the chair with my right leg pushing hard outward and into the seat, and I feel like scoliosis is absolutely in the works.

    My physiatrist started me on Alendronate (Fosamax) back in December in hopes that it would do something to drive a natural reabsorbtion or at least slow the growth. Nothing has happened, and the ossificans only grew during the first half of this year. My orthopedic surgeon thinks it is now stable and safe to operate, but has warned me profusely about risks of cutting a nerve (the sensory-only lateral femoral cutaneous nerve), cutting a vein (she will of course avoid at all costs), incomplete removal (unsuccessful recovery of range of motion), and the possibility of regrowth later. I think she is very good, but just trying to be honest with me. Still, last time I saw her she agreed that because of the way it's restricting me it's worth doing the surgery.

    I've read a few things online about MO healing by being reabsorbed into the body over time but my orthopedic surgeon assured me it's not possible, at least in my case. I've also seen some anecdotal evidence that Alendronate has proved successful in reversing it for some individuals (see link) but mostly read that it has no effect on MO.

    I'm really afraid of this surgery, but can't picture making any more progress with my ADLs or in getting back to an active life with my hip like this. Has anyone had success with ossification reabsorbing if they wait long enough? Or is surgery really the only option?
    Myositis ossificans circumscripta (MOC) is a rare benign disorder characterized by heterotopic ossification of soft tissues. We report a case in a 21-year-old male who presented with knee pain after strenuous physical activity. Evidence of inflammation of the knee and a hard swelling in the subquadr …
    C5/6 complete (maybe) circa June 2018

    #2
    Have they confirmed that the MO has matured and is no longer active with a bone scan (not just an Xray). I would not have surgery without this being done, as active unmatured HO can come back with a vengence if surgery is done then.

    Were you ever placed on Didronel? That is the drug used mostly for MO or HO.

    Yes, removal can be bloody, and do damage to nerves and other soft tissues involved. It should be the absolute last resort, and ideally done by a surgeon who has done many of these surgeries.

    Are they also proposing to do a girdle-stone procedure as part of your surgery? Without that, you may not get the ROM you need in your hip. Either way, be sure you have a good seating re-evaluation post-op as it may change your cushion and seating needs.

    (KLD)
    Last edited by SCI-Nurse; 8 Jul 2020, 9:16 PM.
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      I haven't received a bone scan. I asked for one early this year, but both my physiatrist and surgeon said it is outdated and unnecessary. Should I be skeptical? I also never heard of Didronel. When in the process is it used, and to what effect? And they never mentioned a girlde-stone procedure, so this is the first I've heard of it.

      I'm open to getting a second opinion. Any recommendations of experts in this unique specialty? I live in Boston and am currently hunkering down with family in CT, so someone in New England would be ideal.

      Thank you!
      Emmett
      C5/6 complete (maybe) circa June 2018

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        #4
        You might try Mount Sinai in NYC or Tufts in Boston. I am not sure of who is currently doing OP work in the general area, but I am sure that both of these centers have people who can assist. ckf
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment


          #5
          Resurrecting this very old thread now, a year later. Thanks kld and ckf for your insightful replies.

          After this discussion, in July 2020 I had a nuclear bone scan performed. It showed that the ossification was still continuing at that time. My orthopedic surgeon recommended that we wait another 6 months and have another bone scan in February 2021, which I did. Unfortunately, it showed that the ossification still continued to grow. So she scheduled me for yet another bone scan in August 2021, which would be 22 months after the condition started.

          Despite the fact that it's been growing well beyond the expected 1 year maximum I've read about, I've been lucky because it hasn't felt any different day today throughout that process. That is, until last weekend. Very suddenly, over the course of 2 days, it got substantially worse. The torque in my pelvis is now so severe that I am having significant difficulty performing basic functions, like sitting without falling out of the side of my wheelchair. The pain has increased very noticeably, and the protrusion of the ossification is more visible than ever. I used to say that it was like having a squished softball in my pelvis, but now it's more like a junior size football.

          At the moment I'm just barely able to keep myself functional. However, if this happens again and it gets any worse at all, I don't think I'll be able to get out of bed anymore (both due to the impossibility of transfers, and my inability to sit safely in the chair). At that point, I'm looking for guidance on what to do. Everything I've read has told me that the surgery is a terrible idea if the ossification is continuing to grow. So what would my (best) options be in the event that I lose all functionality?

          Thanks for any and all advice. It's hard to imagine how much I miss the days when all I had to worry about was tetraplegia. This thing is so much worse!
          C5/6 complete (maybe) circa June 2018

          Comment


          • SCI-Nurse
            SCI-Nurse commented
            Editing a comment
            Are you on medication (Didronel) for the HO? This may slow or stop the aggressive active process. Have you been evaluated for possible radiation therapy?

            Unfortunately, if surgery is done prior to the HO becoming dormant, it would most likely trigger a very aggressive acceleration of the HO growth and you could end up in an even worse situation.

            (KLD)

          • ejl10
            ejl10 commented
            Editing a comment
            I'm trying to imagine what that even worse situation would look like! If this gets any worse, my pelvis will be effectively fused in a non-sitting position.

            As far as Didronel is concerned, I am not on it and when I asked about it last year the physiatrist had never heard of it before, essentially ceasing his interest in the conversation. However, I'm back home now with my more informed physiatrist, and I'm seeing her tomorrow so I'll ask again. I have been on Fosamax (alendronate) for the past 2 years to stem off osteoporosis. I asked a few times if it would have an impact on the ossification, but was told that it does not encourage bone growth, but only fight bone loss so it shouldn't have any effect. Nevertheless, when this happened last weekend I stopped my weekly dosage of my own accord.

          #6
          Hi KLD and others,

          I just wanted to provide an update to the group on this. Despite knowing that there are challenges with the still growing HO, I ended up scheduling the surgery to remove it. Hard to describe, but it had gotten so bad that I couldn't really set up in my chair anymore and spent most of the day leaning hard on my right elbow to the extent that it has opened up and bursitis has set in. My transfers were really scary, and I could see the writing on the wall that I wouldn't be able to do them very much longer. My physiatrist got me a CT scan, and when the radiologist said that it was not noticeably different than the scan from the prior June, I immediately contacted my orthopedic surgeon and booked the next available slot on her calendar.

          Turns out that slot was yesterday! Running up to this surgery, I did indeed get radiation therapy, and also given the location of the ossification running from lower quadricep all the way up through my pelvis, I also went into have a sperm sample drawn and put on ice in case the radiation therapy left me sterile.

          After hearing every therapist, nurse, and doctor who looked at this over the past year tell me that it was the worst case they'd seen in their 10, 20, or 30 year careers, I knew that I was at the end of my rope. My surgeon confirmed when she met me this morning that this was a career case for her, the largest and most complicated that she has done. I was in the OR for 10 hours, received four liters of blood transfusions, and they removed two buckets of bone material, however big a bucket is, haha! Apparently she has never had cause to use more than one in the past. Fortunately, she was very proud of the work, and tells me that she chased down every last little bit of ossification, and in the OR was able to move my leg with full ROM. It still feels very similar to me, but I suspect that is due to swelling and whatnot post surgery, and I'm looking forward to intensive rehabilitation over the next month or so at Spaulding.

          One little interesting tidbit is that the last two years I've suffered from some pretty chronic constipation, as well. When I met with the radiation oncologist, she was in the midst of reviewing my June 2020 CT scan, then turned to me and asked me if I had any bowel problems. I replied that yes I had chronic constipation, and in fact had to get a colostomy last November because I was failing to pass anything, and she immediately replied that oh, this is because you're ascending colon is obstructed by the ossification. She turned her monitor and showed me, and it was clear as day! I wish somebody had noticed that in the past, but at the same time I'm hopeful that perhaps this problem will be behind me as well.

          I freely admit that this was not something I wanted to do before confirming that the ossification had stopped, but I reached the point where I didn't feel like I had another choice. Hopefully the choice does not prove a bad one, but in all honesty this took 20 months to form, so even a more aggressive version should stop well short of the same size. My fingers are crossed.

          Thank you all,
          Emmett
          C5/6 complete (maybe) circa June 2018

          Comment


            #7
            Great news! That is a lot of ossification. I know you will work hard in rehab. CWO
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment


              #8
              Hello everyone,

              Thought I would provide a quick update on how the surgery went. Quick answer from the surgeons perspective is that it went very well. She removed a massive amount of calcified material, actually suggesting that she took out more than remains in my femur. She called it a career case, and has been boasting to orthopedic surgeons around the country for the last 2 months, haha.

              It's a little bit more of a mixed bag from my perspective. I have a little bit more range of motion in terms of bringing my knee toward my chest now. Immediately after the surgery I could bring it all the way, but that has been reducing ever since. It feels to me like the condition has all come back, and in some senses it may even be worse. My right leg is massively swollen from mid thigh all the way up through the top of the pelvis, and has some very hard spots under the skin that feel like bone. There is more pain and discomfort than before, and I'm feeling more torque through my right leg into sitting surfaces which is making transfers even harder than they were. But the truth is I'm also much weaker, as I spent nearly two months in rehab with doctors trying to figure out how to overcome this. I suspect this is the dreaded outcome of the ossification returning "with a vengeance."

              One big problem for me has been the advent of severe spasms, namely clonus. I have this in a limited way before, but it has become one of the dominant features in my life. While pushing over even moderately uneven terrain, I can't go more than a few meters without clonus kicking off in my right leg, and a broader spasm traveling through my upper body and kind of pushing me into the rear cushion. It feels like it's trying to throw me out of the chair. The PM&R doctor that worked with me at Spaulding tried to combat this with baclofen, running from a very low dose up to a very high dose with no effect. We then tried tizanidine similarly with no results. The doctor said next step would be to try Valium, but I resisted that because it sounds awfully scary. Anyone have success with other solutions to severe spasms? I've been fortunate for the past 3 years that mine have always been pretty moderate and didn't require any medications, but they now kind of rule the roost.

              I've got some imaging scheduled in the next couple of weeks and follow-ups with the surgeon, so I'll keep you guys posted how this develops. With any luck this is all just part of the body recovery, but I'm gritting my teeth in anticipation of what the next nuclear bone scan will show.

              Take care,
              Emmett
              C5/6 complete (maybe) circa June 2018

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                #9
                good luck and keep in touch! I admire your dedication without complaint! This too shall pass.
                69yo male T12 complete since 1995
                NW NJ

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