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  1. #1

    Iuho

    Hey yall...Hope ev's doing good.Well Ive been comming to this site for a few months now and this is my 1st post. Ive found an endless amount of info here & I hope I can continue to do so now that Ive decided to openly express my situation. I posted this in the caregivers forum because i consider myself a caregiver. Im in a rel with a guy who has a SCI. He was diagnosed a few yrs back with HO. He has it in his hips.It is now fully mature. He's a T3 comp.I relocated to NY and found that they have a lot of SCI clinics and places where he could get better treatment. He lives in Clearwater Fla.So I asked him to fly down here & just check it out. I ve been trying to get him to see a dr about his hips for almost 3 yrs now. His HO really interferes with ADL. he cant do transfers in his own and his posture when sitting is outta this world.Hes 29!!!So he came & right away I did all the medicaid transfers and got ev in order. He went to the clinic 2x and then he had an appt with an orthopedic surgeon tom. But at the last min he backed out & went back home.I dont know what to do now.At what point do u stop forcing it? This is something that clearly he has to decide for himself but its soooo imp. I just cant understand why wouldnt he want to do it. I know this might seem like a weird post I just dont know what to do from here.The fact that we came to NY a little over a month ago and he was being scheduled for surgery should point out the urgency of his situation.I was just wondering if by any chance anyone had been in my same situation or if anyone just had an opinion.Thanx

  2. #2
    Senior Member CurvySAT05's Avatar
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    Hi Chillin,
    Sorry no one has responded to your post yet. It sounds like you are doing your best to help your SO, giving him information and setting up logistical stuff with insurance, etc. Like you said, it ultimately is up to him and for many people the thought of major surgery (after usually already having a major surgery from the original SCI) is a hard thing to imagine. Get opinions from MULTIPLE doctors about what should be done for his HO, and give it some time. He will choose what is best for him, but might not be ready to make a decision one way or another this quickly.
    Hopefully someone else will be able to answer your questions a little better. I haven't personally dealt with HO, so I can't share personal info about treatments, etc.
    Good luck to you and your SO.
    Mandy
    ~Mandy~
    SCI as a result of spinal surgery
    TiLite Aero Z!!!

  3. #3
    Honestly i thought id get more answers....Im not sure if he can get as many opinions as wed like on Medicaid. I did make an appt at Hos for Special Surgery. But right now i dont hink hes going. Both appt were in a few weeks. But in any case thx 4 caring.

  4. #4
    Quote Originally Posted by chillin View Post
    Hey yall...Hope ev's doing good.Well Ive been comming to this site for a few months now and this is my 1st post. Ive found an endless amount of info here & I hope I can continue to do so now that Ive decided to openly express my situation. I posted this in the caregivers forum because i consider myself a caregiver. Im in a rel with a guy who has a SCI. He was diagnosed a few yrs back with HO. He has it in his hips.It is now fully mature. He's a T3 comp.I relocated to NY and found that they have a lot of SCI clinics and places where he could get better treatment. He lives in Clearwater Fla.So I asked him to fly down here & just check it out. I ve been trying to get him to see a dr about his hips for almost 3 yrs now. His HO really interferes with ADL. he cant do transfers in his own and his posture when sitting is outta this world.Hes 29!!!So he came & right away I did all the medicaid transfers and got ev in order. He went to the clinic 2x and then he had an appt with an orthopedic surgeon tom. But at the last min he backed out & went back home.I dont know what to do now.At what point do u stop forcing it? This is something that clearly he has to decide for himself but its soooo imp. I just cant understand why wouldnt he want to do it. I know this might seem like a weird post I just dont know what to do from here.The fact that we came to NY a little over a month ago and he was being scheduled for surgery should point out the urgency of his situation.I was just wondering if by any chance anyone had been in my same situation or if anyone just had an opinion.Thanx
    Chillin,

    Sorry that I didn't see your post until just now. Heterotopic ossification (HO) occurs frequently in people with spinal cord injury (ranging from 3% to 47% in various studies), developing during the first 12 weeks or so after injury. Basically, tissues around paralyzed joints develop calcification that look like bone. The cause is still not known but inflammation is known to contribute to HO because anti-inflammatory drugs (such as indomethacin or ibuprofen, or COX-2 inhibitors) helps prevent and occasionally even reverse its progression. It is typically not dangerous but it can reduce range of motion of affected joints and, as you describe, interfere with activities of daily living. Care must be taken to protect the skin around the HO. The hip is the most commonly affected joint.

    Note that the recurrence rate of HO is nearly 100% if the surgery is carried out while the HO is still forming. At a few years after his injury, it should be mature and the surgery should eliminate the bone and help restore his range of motion. The surgery is not innocuous because HO tends to be quite vascular and there may be significant blood loss associated with its removal. Also, there may be a high incidence of postoperative infection and care should be taken to give covering antibiotics after surgery. In short, it is important to have the surgery done by an experienced doctor who has been treating many of these.

    While radiation therapy is sometimes suggested in liu of surgery, the radiation usually will not reverse HO once it has established and radiation itself carries some risk of producing malignancies later at the radiation site. So, unless there is a strong contraindication for surgical excision, the best approach is to have the bone mass removed by surgery by an experienced doctor. During the surgery, they should be prepared with several units of blood and covering antibiotics should be used. After the surgery, physical therapy is recommended and eventually anti-inflammatory drugs.

    I don't know why your friend decided to go back and not get the surgery. Perhaps he did not understand the information or he is afraid of surgery. If he will not talk with you about this, perhaps you can find someone else who can talk to him about the risks and benefits of surgery. In my opinion, based on your description, he probably should get the surgery.

    Wise.

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