HO - Heterotopic Ossification

[Doug 10]

I need information about HO because I have it growing in my leg. The medical term "Heterotopic Ossification" means bone growing where it don't belong. In my case from a trauma (motorcycle vs car) to the left leg. On the xray it looks like smoke rings among my muscle tissue and has already limited the flex of the knee joint. I have done some internet research and learn what little I could find.

So if you know about this please let me know.

Thanks Doug

[Neal 20]

I've heard of people who've had this. I think the only solution is surgery to remove the excess bone if it bothers the patient. Some people get a little and it never really presents a problem. Others have razor sharp bone growth that is very painful.

I'm sorry this has happened to you. Maybe someone else on the forum will come along that has had it. They will be the ones who can give you some advice.

[Doug 10]

Thanks Neal

My surgeon was "waiting to see" how this would effect me. So far it has limited the flex of my knee. I can bend far enough to walk on the flat. My sound leg does all the work on steps.

The bigger issue is bone growing out of the skin. It cuts the soft tissue because of pressure when I wear the prosthesis. Have not closed the wound for eight months.

And the other thing is; if this is sugically removed before the bone matures, it will grow back.

[Neal 20]

That's a bummer Doug. Some of us have it so easy while others, like you, have to put up with constant setbacks. I hope this is over for you soon.

[ann 39]

Hi Doug,

I also have bone spurs but mine are in the stump, not in the knee joint. One of the spurs they think is from where the stump was originally broken above the amputation line, and another spur has appeared in the last year or so, for what seems no apparrent reason, from the fib head and growing across the front of the stump towards the other spur just above the end of the tibia. The first, old spur I have been told is probably inactive and doesn't cause me too many problems, it is quite thick so imagine would cause probs to get rid of at this point, however, like yours it does jut out the skin a bit, mine is under skin graft, and part the reason why I wear a pretty thick liner, the more recent spur I did want rid of, but was advised because it was growing inwards to leave it, had it been growing outwards I am told they would have removed it.

Can imagine your concerns with yours being in the knee and having an open wound, think I would be wanting something done about that.

[Doug 10]

My Orthopedic Surgeon called my leg guy, another orthoped, and a plastic surgeon to figure out a solution. So far so good right?

They all came to the conclusion that they don't know what to do. Since HO grows back if it has not matured, "we" are going to wait a few months. I am going for another opinion soon. The answer may be to go from BK to AK. (comments wanted) This would eliminate most of the skin grafts, a non functional knee and the HO that is keeping me out of my socket now. Plus this knee joint needs a replacement because of arthritis.

If they amp higher, I would also get a knee that bends.

[Neal 20]

As awful as it might sound, it might very well be your best solution. If you have no use of the knee anyway, you may see a more active lifestyle. There are many highly active AKs anymore. I would consider it.

[ann 39]

As awful as it might sound, it might very well be your best solution. If you have no use of the knee anyway, you may see a more active lifestyle. There are many highly active AKs anymore. I would consider it.

Hi again Doug, just reading Neal's posting .... must admit this was my dilemma before my revision a few years ago, though am bilateral so was looking at a slightly different scenario to you ..... an orthopaedic surgeon had warned me I'd probably lose the knee on that side, at the time that came as a bit of a shock though later when I became aware of the damage under the graft then I realized perhaps his reasoning, however, my knee was as far as I knew structually quite sound ... as it turned out I went plastically and remained a b/k .... though I do still have to juggle what I do and how long I can wear the prosthesis for, but as a bilateral and as someone of my age who has lived with the probs of the skin graft for so many years, its for me a good trade off ... and with the help of a really good liner, I still keep relatively mobile. For you though, as a single b/k having skin grafts and possibly having to have a knee replacement on the same side, you might very well be better off above knee. Can imagine that would be a hard decision for you to make as its all unknown, and we never get any guarantees. I do thnk you are wise getting another opinion.

[Doug 10]

As awful as it might sound, it might very well be your best solution. If you have no use of the knee anyway, you may see a more active lifestyle. There are many highly active AKs anymore. I would consider it.

As awful as it might sound, it might very well be your best solution. If you have no use of the knee anyway, you may see a more active lifestyle. There are many highly active AKs anymore. I would consider it.

Hi again Doug, just reading Neal's posting .... must admit this was my dilemma before my revision a few years ago, though am bilateral so was looking at a slightly different scenario to you ..... an orthopaedic surgeon had warned me I'd probably lose the knee on that side, at the time that came as a bit of a shock though later when I became aware of the damage under the graft then I realized perhaps his reasoning, however, my knee was as far as I knew structually quite sound ... as it turned out I went plastically and remained a b/k .... though I do still have to juggle what I do and how long I can wear the prosthesis for, but as a bilateral and as someone of my age who has lived with the probs of the skin graft for so many years, its for me a good trade off ... and with the help of a really good liner, I still keep relatively mobile. For you though, as a single b/k having skin grafts and possibly having to have a knee replacement on the same side, you might very well be better off above knee. Can imagine that would be a hard decision for you to make as its all unknown, and we never get any guarantees. I do thnk you are wise getting another opinion.

Thanks for the reply.

I have time before any decision needs to be made so I will revisit all of the doctors.

First one is planned for next week already.

The trauma surgeon did his job well by saving my life and preserving as much as possible of my leg.

So I am very happy they are all working for the best outcome.

[kate 26]

All the best Doug and keep us posted!

[Doug 10]

And the process begins again.

I saw two other doctors today and both of them say the best possible result would come from moving the amputation to AK.

They may also use radiation to minimize the growth of HO.

Got a few months before they actually do this.

[Neal 20]

I guess that's good and bad news. Good that you know what should happen. Bad because you have to wait so long to get it done. I hate complications.

[Doug 10]

I guess that's good and bad news. Good that you know what should happen. Bad because you have to wait so long to get it done. I hate complications.

Looks bad at first Neal. But when I look at all the improvements in mobility, life should be better.

[ann 39]

Recently had a similar conversation with another amp Doug, this chap was a bit upset that his surgeon had amp'd him a/k when he felt he should have been b/k ... but I guess there were reasons. On balance I think, particularly if you are a single amp that you can perhaps be more mobile as an a/k with a good stump than if you spend most of your time not being able to wear your b/k prosthesis because of problems. But appreciate it must be a huge decision to have to make.

Am really interested to hear that they can minimize the growth of HO with radiation, not sure if they do this over here as it wasn't mentioned to me but I might be raising the question as and when.

Hope they don't keep you waiting to long to get it sorted for you.

[Doug 10]

Decision has been made; starting the paperwork to remove the knee and as much of the HO as possible.

Ann the doctors don't know much about HO either, studies are still being done. After they remove what they can, they are using radiation to TRY to stop future growth.

[cherylm 125]

Doug, I know absolutely nothing about HO, so I've just been "following" this discussion...but now that the decision has been made, I just wanted to wish you all the best with the surgery and radiation treatment. I hope it does lead to greater mobility for you!

[mmarie 13]

Best wishes to you, Doug. Will be praying all goes well.

[Doug 10]

Best wishes to you, Doug. Will be praying all goes well.

Thank You

[Doug 10]

Doug, I know absolutely nothing about HO, so I've just been "following" this discussion...but now that the decision has been made, I just wanted to wish you all the best with the surgery and radiation treatment. I hope it does lead to greater mobility for you!

Not a whole lot is known about HO by anybody Cheryl. Thank You

[kate 26]

Now your dilemma is resolved please keep us posted Doug. Best of luck, we'll all be thinking of you!

[Doug 10]

Now your dilemma is resolved please keep us posted Doug. Best of luck, we'll all be thinking of you!

Surgury is just this weekend away. "I'll be back."

[Neal 20]

Good luck Doug.

[flip 11]

Good luck Doug! We will all be thinking positive thoughts for you.

[Doug 10]

Time to get it done. Thanks for the well wishes and prayers. See you all in a few days....