1 reply to this topic

[alia626]

hello all--

i am an office manager in an orthopedic hospital in nyc. i had a call a few days ago from a young man in florida... an incomplete c5-c6. he has been misdiagnosed for a year and a half at his local VA hospital. he insisted he felt hip pain, and his doctors wrote him off as having referred spine pain. the long and the short of it -- his hip is dislocated and has been for about a year and a half. i've been in ortho long enough to know his hip can't be "put back in". his call spurred me to do some research. i've read some of the posts here and you all have a wealth of experience and knowledge. reading posts here have given me a whole new level of respect and understanding for a para/quad and their families. my experience stopped and started with the jerry lewis tele-a-thons.

for a para/quad the current standards of care are to remove the femoral head and top portion of the femur. he's doing everything in his power to exhaust all options before resorting to that. my boss does hip/knee replacements. the procedure he needs starts the same way as a replacement. a portion of the hip bone gets removed and an implant is secured. in his case--> he wouldn't receive the implant. pediatric orthopedic surgeons tend to do this procedure on cerebral palsy patients. he's even mentioned stem cell research.... and hoping for a cure in his lifetime. if he has the surgery, he'll never walk again, but he's hoping for a cure. eventually. and for him to *eventually* walk again, he'd need his hip in its entirety. he wants to be able to sit in his chair w/o "tilting". he has been dislocated for so long, that he now is begining to get scoliosis. for the time being he wants to be able to push a manual chair to play rugby!

he's asked me if he could talk to patients who have had this done. i have no names to give him. this procedure is not common for my boss' practice. my patient population need joint replacements to live a pain free active life. has anyone here had this type of surgery? i don't know how to help him. he's called other offices looking for help and has been laughed at, yes'ed to death or hung up on. bottom line- no one wants to touch him as he is high risk. my heart went out to him when he told me his story. i have to help him. my boss would do the surgery, but his after care would come into question. he can't just hop a plane from florida to new york if something happens and he needs orthopedic attention. i have put calls into other offices calling in favors-- hoping to be put in touch with CP kids/ their families that have had this procedure. i'm also looking into finding a doctor for him in miami, so his aftercare would be easier on him.

can anyone here help me to help him? does anyone know of this procedure for a quad? how was the outcome? maybe a physician referral? i feel like a fish out of water. as a surgical coordinator for hip and knee replacements i get to see people walk again.... this is completely new for me.

i know this is a long note, (and i babbled... alot) but thanks for taking the time to read this....

kind regards to all-
Laura

[sprog24]

alia626, on Jan 13 2007, 11:03 PM, said:

hello all--

i am an office manager in an orthopedic hospital in nyc. i had a call a few days ago from a young man in florida... an incomplete c5-c6. he has been misdiagnosed for a year and a half at his local VA hospital. he insisted he felt hip pain, and his doctors wrote him off as having referred spine pain. the long and the short of it -- his hip is dislocated and has been for about a year and a half. i've been in ortho long enough to know his hip can't be "put back in". his call spurred me to do some research. i've read some of the posts here and you all have a wealth of experience and knowledge. reading posts here have given me a whole new level of respect and understanding for a para/quad and their families. my experience stopped and started with the jerry lewis tele-a-thons.

for a para/quad the current standards of care are to remove the femoral head and top portion of the femur. he's doing everything in his power to exhaust all options before resorting to that. my boss does hip/knee replacements. the procedure he needs starts the same way as a replacement. a portion of the hip bone gets removed and an implant is secured. in his case--> he wouldn't receive the implant. pediatric orthopedic surgeons tend to do this procedure on cerebral palsy patients. he's even mentioned stem cell research.... and hoping for a cure in his lifetime. if he has the surgery, he'll never walk again, but he's hoping for a cure. eventually. and for him to *eventually* walk again, he'd need his hip in its entirety. he wants to be able to sit in his chair w/o "tilting". he has been dislocated for so long, that he now is begining to get scoliosis. for the time being he wants to be able to push a manual chair to play rugby!

he's asked me if he could talk to patients who have had this done. i have no names to give him. this procedure is not common for my boss' practice. my patient population need joint replacements to live a pain free active life. has anyone here had this type of surgery? i don't know how to help him. he's called other offices looking for help and has been laughed at, yes'ed to death or hung up on. bottom line- no one wants to touch him as he is high risk. my heart went out to him when he told me his story. i have to help him. my boss would do the surgery, but his after care would come into question. he can't just hop a plane from florida to new york if something happens and he needs orthopedic attention. i have put calls into other offices calling in favors-- hoping to be put in touch with CP kids/ their families that have had this procedure. i'm also looking into finding a doctor for him in miami, so his aftercare would be easier on him.

can anyone here help me to help him? does anyone know of this procedure for a quad? how was the outcome? maybe a physician referral? i feel like a fish out of water. as a surgical coordinator for hip and knee replacements i get to see people walk again.... this is completely new for me.

i know this is a long note, (and i babbled... alot) but thanks for taking the time to read this....

kind regards to all-
Laura

hi, i think you should ring up some spinal units, cause i'm sure they have come across this prob before. When i was in stoke mandeville i remember a man had a broken hip which he had had for a number of months, he chose to have that section removed, but he had to learn to adjust his balance to compensate. Like i said ring up the spinal units and i'm sure u will get the best advice from there.