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Thread: 23 yrs post, I may have heterotypic ossification again??/!

  1. #1
    Senior Member pfcs49's Avatar
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    23 yrs post, I may have heterotypic ossification again??/!

    I had HO (heterotypic ossification: laying down bone material where it doesn't belong) in 95 in rehab which somewhat limited the range of motion in my right leg, but has been manageable, and went cold after six months.
    Now, seemingly suddenly, I've lost a debilitating amount of ROM again. It is virtually impossible to get my right ankle onto my left knee ("cross my leg") and the subsequent deal resembles a large trap waiting to be sprung by the least disturbance.

    Dealing with right pants legs is very difficult; wound car to my right ankle is near impossible.
    Also, bending forward is limited; sitting up in bed or on my showering platform is near impo0ssible; i'm pre-loaded in the lie-down direction!
    And, it will probably be getting worse. I don't know if it's HO or some other situation.

    I thought I'd post up here before the usual train wreck that usually accompanies enrolling the docs! Bone scans and bullshit and no change is my fear.
    I've heard of some operation to remove the joint but my trochanter has a large coaxial titanium screw through it!
    Any informed advice is appreciated.
    69yo male T12 complete since 1995
    NW NJ

  2. #2
    Aggressive ROM and stretching may help to maintain range of motion in these joints, but you should also see your physician to see if you are in the active phase of HO, when medication may be indicated.

    Surgical procedures should never be done on actively growing HO; it must wait until "maturation".

    HO years post SCI can be triggered by surgical procedures or pressure ulcers. Have you had recent issues with these?

    (KLD)
    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.

  3. #3
    Senior Member pfcs49's Avatar
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    Quote Originally Posted by SCI-Nurse View Post
    Aggressive ROM and stretching may help to maintain range of motion in these joints, but you should also see your physician to see if you are in the active phase of HO, when medication may be indicated.

    Surgical procedures should never be done on actively growing HO; it must wait until "maturation".

    HO years post SCI can be triggered by surgical procedures or pressure ulcers. Have you had recent issues with these?(KLD)
    No excepting resection of most of rectum and remnant of colon below colostomy, 2 years ago.

    I also wonder if something other than HO could be cause?

    Do you have any familiarity with a procedure that removes or minimizes the hip joint or socket?
    The old HO is on the groin area; would intervention to the trochanter influence the pelvic bone regarding HO?
    69yo male T12 complete since 1995
    NW NJ

  4. #4
    If you are talking about a girdlestone procedure, yes, I have had a number of SCI/D clients who had this, either due to HO or osteomyelitis. As I mentioned above, if you have ACTIVELY growing HO, then surgery should not be considered; only after it has matured. Serial bone scans are required to determine this.

    HO is more likely to be reactivated where you had it before, but it can be reactivated by a wound or surgery in a distant area.

    Have you consulted your physician (physiatrist or orthopedic doctor familiar with HO in SCI/D) and had a definitive diagnosis, and to discuss medication to treat if active?

    (KLD)
    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.

  5. #5
    Senior Member pfcs49's Avatar
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    I am seeing my wound care guy on Friday who was a rehab Doc in Boston. I know what he'll say but will ask anyway! (orthopedist, bone scan, etc. Been there/done that 23 yrs ago. Isn't here something medical like instant gratification besides Oxycodone?)

    22 years ago I discontinued Digronel? because the other end (distal femur) wasn't laying down calus! It just never ends!!

    Signed, 71 and exhausted
    69yo male T12 complete since 1995
    NW NJ

  6. #6
    Current drugs used for active HO include Indocin (indomethacin) and Didronel (etidronate disodium). Treatment has not really changed in the last 27 years. Sorry.

    (KLD)
    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.

  7. #7
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    Had HO in my right hip, right after my injury, and after a year and stop getting larger. When I broke my legs four times in two years, my right hip doubled again, and again.

    So it appears for me whenever breaking a bone the calcium my body produces to fix it, ends up in my hip.

    Also believe if you ever have to chip it off, it's like pruning a shrub it grows back twice as strong.

  8. #8
    Doing surgery when it is still growing can cause a "rebound" effect, which is why it is very important to be sure the HO has "matured" prior to any surgical procedure. Often the surgery required also means removing muscle and ligaments involved in the HO, not just the joint, and it can be a very bloody procedure.

    (KLD)
    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.

  9. #9
    Senior Member pfcs49's Avatar
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    I visited the head of orthopedic surgery at Morristown Memorial.
    He had me get an MRI:
    "moderate right greater trochanteric bursitis; status post ORIF of right femur with extensive HO as described"
    "there is moderate HO adjacent to the anterior inferior iliac spine and medially about the proximal femur in the region of the lesser trochanter. HO is also noted more distally along the diaphysis.
    There is no evidence of acute fracture,There is diffuse severe fatty atrophy of the visualized musculature with mild spurring of the posterior compartment musculature. There is sub-cutaneous edema noted laterally, There is diffuse intramuscular edema within the right gluteus medium muscles.
    There is intramuscular edema within the vistas medals muscle.
    HO about the anterior inferior iliac spine does displace the femoral vessels medially. The fat planes surrounding the sciatic nerves are preserved."

    I already had X Rays of my pelvis:
    "No acute fracture present. No bony destructive lesion is seen. Previous right femoral ORIF. Extensive HO degenerative osseous changes along the proximal right femur.
    Spinal fixation hardware is incompletely visualized.
    "Joints: no dislocation is present. Moderate bilateral circumferential hip joint space narrowing, right slightly greater than left.
    Accompanying hypertrophic changes are noted along each acetabulum.
    Sof tissue: prominent HO allang both proximal femurs. An IVC filter is also partially visualized."

    The doctor never examined me or palpated, or checked ROM.
    He said he would do the Girdlestone Procedure to my right hip/proximal femur.
    Prior to surgery I would get one radiation treatment to the area.
    He states the cause of the reduced ROM is arthritic and perhaps the tip of the coaxial screw in the trochanter is now contacting the hip joint socket.
    I queried him about the perils of surgery to areas that had or have HO. He seemed unconcerned, almost blas?.
    I asked him about a bone scan to see if there was active HO; he didn't see a need to do that.
    Hw wants me to get a CT pelvis wo contrast:
    (diagnosis: Post-traumatic osteoarthritis of right hip (M16.51 [ICD-10-CM] 715.25 [ICD-9-CM])
    CPT code: 72192

    He gave me a whole folder of requirements to fulfill prior to his doing the surgery (I doubt he's my man. I told him I was getting opinions. I will see my physiatrist, Dr Kirshblum @Kessler ASAP, and hopefully a referral)
    I was shocked that he didn't want a bone scan; I was surprised he didn't examine me; I was very strident about the risks of surgery to active HO;
    a rehab Dr told me he doubted anyone would do the surgery because of the high risks of bleeding to death-but he referred me to this doctor!

    I am surprised to see HO discerned on my proximal femur/trochanter; also, never was I diagnosed as having HO on my left hip/femur! My understanding was that HO was on the front of pelvis over the right hip joint and my own palpation confirms this?!?

    So is this doctor clueless about HO or is he on target? These results seem to show HO on the trochanter/proximal femur (news to me). I had assumed Girdlestone procedure would not involve areas with HO, hot or not, but apparently not so.

    Footnote: for most of the 23 years post injury I have battled wounds on the right foot, mainly the malleoli. Also intermittent shooting pain at the groin line (intersection of sensate/non-sensate) I hope that reducing the interference in the hip may ameliorate these other issues which really suck!

    Looking forwards to hearing from KLD and others!
    Last edited by pfcs49; 03-02-2019 at 09:41 PM.
    69yo male T12 complete since 1995
    NW NJ

  10. #10
    Senior Member pfcs49's Avatar
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    Still waiting for feedback!
    Can anyone give me the specific information regarding the type of bone scan needed to discriminate hot/cold heterotrophic ossification?
    69yo male T12 complete since 1995
    NW NJ

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