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Have you ever dealt with "myositis ossificans"?

GailP
0 Recommendations

My son, Patrick, sustained a spinal cord injury (T9 incomplete) in March of this year. He is waiting to undergo surgery on his hip, as his hip is "locked" due to bone growth. The CT scan has showed it is most likely "myositis ossificans", which seems to be that muscle is turning into bone. The CTscan report also says they can't rule out osteosarcoma (I know what that is). I want to be as optomistic as I can and believe that it is the Myositis ossificans. We're not sure yet if the surgery will involve removing the bone growth, or a hip replacement. The surgeon is reviewing the films with other doctors and is supposed to contact Patrick's Dad by the beginning of the week. This is so hard for me, since I'm about 800 miles from Patrick.

Explore topics in this discussion:

Surgery Osteosarcoma Myositis Indocin Myositis ossificans

6 replies

FuschiaFan

Myositis ossificans technically rarely occurs in SCI as that is the type of abnormal bone growth that occurs after joint replacements or other bone trauma or surgery. In people with SCI and TBI it is more properly called heterotopic ossification (HO).

http://www.spinalcord.uab.edu/show.asp?durki=21485

Is this physician real experienced in the management of HO? Have they done the tests required to determine if the HO has "matured" yet? Surgery should NEVER be done if it has not, as it can actually cause a rebound effect (make it come back even worse). Has he been taking medications for HO (usually Indocin and/or Didronel)? How long has he had it? This is a risky surgery is there tends to be a lot of blood loss, and post-operative hematomas and infection are common.

Hip replacements are rarely successful in people with SCI unless very incomplete since you cannot do the required exercises that will help stabilize the joint and prevent dislocation. A girdlestone is a more common procedure.

GailP

It was called Myositis Ossificans in the CTscan report. The Surgeon is one of the best around, chief ortho at University of PA hospital. She is conferring with some other Drs there and is supposed to call Patrick's father the beginning of the week. She hasn't said exactly what will be done as yet, we were surmising a hip replacement. Patrick is not on any meds for this, as the CTscan was just taken about a week ago. His hip has been "locked" for a while. They had taken a bone graft from his hip for his spine. He also had a prior injury, years ago, from a car accident. I don't think they know exactly when this problem began. We are waiting to hear what the Surgeon says. The problem is, I get everything second, and it's usually editorialized and blown out of proportion by my ex. I am exhausted by just listening to him most days. I just want to get Patrick to where he can at least me somewhat independent. Right now, he's not there and I am beside myself.

FuschiaFan

I hope you read the article I linked for you. Failure to manage this properly (and you should ask if it is really HO) could be disasterous.

GailP

Yes I printed out the article. And I was wrong, he had been on meds to stop bone growth, but it didn't stop it. We need to hear what the surgeon says after they have reviewed the films. They said there were a few unusual things, one of which was the MO. I am talking to Patrick's father also, but that doesn't bring much to the table.

onearmbanditchick

Did the Doctors ever give you the correct diagnosis.. NOT myositis ossificans.. but Fibrodysplasia Ossificans Progressiva..

The Cheif Ortho Doctor over Fibrodysplasia Ossificans Progressiva is at teh Universit of PA..

What has gone on? I just signed up for this site today- Very new here..

I have dealt with Fibrodysplasia Ossificans Progressiva 24 years now..

GailP

Patrick had surgery last November - it was classified as heterotopic ossification (HO). It was done at Pennsylvania Hospital by Dr.Mary Ann Keenan. She is the chief ortho for Univ of PA Hospital. His case was quite a mess, but so far, no recurrence. He has enough other issues - we don't need this to reoccur.

Poor kid is struggling in so many ways, but most of all in his dealing with his father (his caregiver). It's a hard road to hoe!

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