Post by Kristen Gamauf on Oct 18, 2005 20:41:06 GMT -5
DAY 15 AT EDWIN SHAW
Mike's visit to the orthopedic doctor resulted in some scary information.
We have been told that Mike has heterotopic ossification (HO) of the knee. HO is common in spinal cord injured patients, and also in TBI patients.
What is happening in his knee is that muscle and soft tissues like tendons are turning to bone, more or less. They start as young soft bone, then mature to real bone. It is unknown why a small percentage of TBI, mostly male, patients develop this. It is uncommon in the knee for TBI's and more common for them in the elbows and hips.
Mike has extreme pain in the joint. However, he must continue to move his knee or else it could freeze up (worst case). Mike knows and understands this, but says it will be hard because it hurts so much.
Odds say that whatever has formed there won't fully reverse. It could shrink with increased range of motion, but it will never go away.
Apparently it has something to do with the neurologic trauma. There are certain proteins and serums that become over-active right after the trauma that signal dormant bone stem-cells in nearby tissues around joints to become active. Normally they don't. This is what I read on one website, and I don't know if I got all my facts straight. Anyways, no one knows what causes it and how to treat or reverse it.
However, I must say that I was not overly happy with Mike's whole orthopedic experience. In fact, if I had posted this earlier, you would have seen that I was livid. I found the office to be unprofessional and the doctor to be very brief and non-descriptive. They scampered around there when we got there as if they had no idea we had an appointment for Mike. They tried to make us fill out 20 mins. of redundant forms about Mike's medical history though they had a packet of info and all his charts, meanwhile Mike was sitting there fatigued. When I told them hurry up and get him in, he fatigues easy, the young receptionist erroneously relayed the message to the worry-wart nurse that he was sick, in which she nearly refused to see Mike because they "aren't prepared for someone unstable." I said, so what, if someone comes in here with a heart attack you gonna turn them away (that freaking liability thing)? In which we finally convinced them that he's not sick, just tired so hurry the hell up! We probably got charged a thousand bucks or something for him to squeeze Mike's knee and say, "That's calcification of the soft tissue, there's nothing you can do about it, sorry, see ya." I said to him, "With all due respect, not to sound too offensive (I always say that right before I offend someone), but why couldn't you have seen him before he left AGMC and pinched his knee and told us what the Hell it was, so as to save us a dangerous trip over here (since insurance wouldn't cover Mike's transport) and so that he could have been moving it all the last two weeks? <jackass, was what I was thinking but I didn't say>" Of course, you get the obligatory "CYA" answer, as I call it, "Cover Your Ass". I'm sorry, you see my ugly side. But when it comes to my brother's health, we better be treated like the center of the universe. It seems like we got blown off the entire time that his knee was swollen. We demanded that they get to the bottom of it before he left AGMC, but no one did. It would have been nice to know that he needs to work it and not baby it in rehab the last two weeks so it doesn't become permanently stiff. Okay, all this information I found by my own lonesome 23-year-old non-medical professional self on the internet. I regret not being more pushy about the issue. YOU MUST NOT BE PASSIVE WHEN IT COMES TO YOUR HEALTH!
Okay, I lied, I'm still livid.
This is not the information we wanted to find out today, but I am still not out of hope that this too will somehow pass or be overcome. Mike is very strong and determined, and just looking at all the progress he's made so far, the sky's the limit.
I have tried to quickly research HO tonight. I need to do some other things. Below are a few websites I found on it (first ones I saw). I can find little information on treatment or rehabilitation techniques. If you are bored and surfing the internet, see what you can find. If you find a good site, post it under the RESOURCES page. I am convinced that there must be some sort of plan of attack that can be done, and I am curious if anything could have been done to prevent it. It is something that not many people evidently have heard of though. I guess we continue to learn something everyday. Maybe someone in the future could benefit by knowing about this factor in TBI.
www.emedicine.com/radio/topic336.htm
gait.aidi.udel.edu/res695/homepage/pd_ortho/educate/clincase/hobone.htm
www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1543430&dopt=Abstract
Also, I will be uploading a photo of Mike walking so you can all see with your own eyes what you can't believe is true!
Mike's visit to the orthopedic doctor resulted in some scary information.
We have been told that Mike has heterotopic ossification (HO) of the knee. HO is common in spinal cord injured patients, and also in TBI patients.
What is happening in his knee is that muscle and soft tissues like tendons are turning to bone, more or less. They start as young soft bone, then mature to real bone. It is unknown why a small percentage of TBI, mostly male, patients develop this. It is uncommon in the knee for TBI's and more common for them in the elbows and hips.
Mike has extreme pain in the joint. However, he must continue to move his knee or else it could freeze up (worst case). Mike knows and understands this, but says it will be hard because it hurts so much.
Odds say that whatever has formed there won't fully reverse. It could shrink with increased range of motion, but it will never go away.
Apparently it has something to do with the neurologic trauma. There are certain proteins and serums that become over-active right after the trauma that signal dormant bone stem-cells in nearby tissues around joints to become active. Normally they don't. This is what I read on one website, and I don't know if I got all my facts straight. Anyways, no one knows what causes it and how to treat or reverse it.
However, I must say that I was not overly happy with Mike's whole orthopedic experience. In fact, if I had posted this earlier, you would have seen that I was livid. I found the office to be unprofessional and the doctor to be very brief and non-descriptive. They scampered around there when we got there as if they had no idea we had an appointment for Mike. They tried to make us fill out 20 mins. of redundant forms about Mike's medical history though they had a packet of info and all his charts, meanwhile Mike was sitting there fatigued. When I told them hurry up and get him in, he fatigues easy, the young receptionist erroneously relayed the message to the worry-wart nurse that he was sick, in which she nearly refused to see Mike because they "aren't prepared for someone unstable." I said, so what, if someone comes in here with a heart attack you gonna turn them away (that freaking liability thing)? In which we finally convinced them that he's not sick, just tired so hurry the hell up! We probably got charged a thousand bucks or something for him to squeeze Mike's knee and say, "That's calcification of the soft tissue, there's nothing you can do about it, sorry, see ya." I said to him, "With all due respect, not to sound too offensive (I always say that right before I offend someone), but why couldn't you have seen him before he left AGMC and pinched his knee and told us what the Hell it was, so as to save us a dangerous trip over here (since insurance wouldn't cover Mike's transport) and so that he could have been moving it all the last two weeks? <jackass, was what I was thinking but I didn't say>" Of course, you get the obligatory "CYA" answer, as I call it, "Cover Your Ass". I'm sorry, you see my ugly side. But when it comes to my brother's health, we better be treated like the center of the universe. It seems like we got blown off the entire time that his knee was swollen. We demanded that they get to the bottom of it before he left AGMC, but no one did. It would have been nice to know that he needs to work it and not baby it in rehab the last two weeks so it doesn't become permanently stiff. Okay, all this information I found by my own lonesome 23-year-old non-medical professional self on the internet. I regret not being more pushy about the issue. YOU MUST NOT BE PASSIVE WHEN IT COMES TO YOUR HEALTH!
Okay, I lied, I'm still livid.
This is not the information we wanted to find out today, but I am still not out of hope that this too will somehow pass or be overcome. Mike is very strong and determined, and just looking at all the progress he's made so far, the sky's the limit.
I have tried to quickly research HO tonight. I need to do some other things. Below are a few websites I found on it (first ones I saw). I can find little information on treatment or rehabilitation techniques. If you are bored and surfing the internet, see what you can find. If you find a good site, post it under the RESOURCES page. I am convinced that there must be some sort of plan of attack that can be done, and I am curious if anything could have been done to prevent it. It is something that not many people evidently have heard of though. I guess we continue to learn something everyday. Maybe someone in the future could benefit by knowing about this factor in TBI.
www.emedicine.com/radio/topic336.htm
gait.aidi.udel.edu/res695/homepage/pd_ortho/educate/clincase/hobone.htm
www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1543430&dopt=Abstract
Also, I will be uploading a photo of Mike walking so you can all see with your own eyes what you can't believe is true!