femur bone metastases related prosthetic problems discussion
Posted: Thu Sep 01, 2011 11:38 pm
this is a REPOST from the osteo group……
Many of you know that we found out a couple of weeks ago that Lxxxx needs to have a revision done on her prosthetic, and our original surgeon wants to add a much longer prosthetic stem up higher into her femur, almost all the way to her pelvis, where now, it's at mid thigh. He told me that after the new prosthetic was set, the bone would 'grow back' into the area where her femur is now just an egg shell around the stem of the prosthetic. He told me that it is because of the chemotherapy and the fact that she hasn't been weight bearing for that year of chemo, that her femur lost the bone density around the prosthetic.
Gratefully, we had a second opinion last week from Dr. Lor Randall, a great Dr. who is pretty well known for his work. We didn't go with him originally, only because we didn't know of him until after Lillie's surgery. Dr. Randall looked at Lillie's x-rays and explained to us that it was not the chemo nor lack of weight bearing that hollowed out her femur, but the prosthetic itself. He told us that this 'stem' type of prosthetic is designed to fail and does fail all of the time. If not sooner, then later. He explained that the stem is basically forced up into the bone and with luck, the bone will grow around it, but it doesn't always happen, or over time, will loosen and need to be revised. When it's revised, the stem has already damaged the bone that it's been wedged into, so that bone is no longer usable, and the prosthetic now needs to go deeper into the bone to catch hold, and over time will also destroy THAT bone. The idea that the prosthetic failed because of Lillie's chemo and non weight bearing is an absolute lie. We realized that, while the chemo has thinned her bones, the bone DIRECTLY above the prosthetic was more dense and good. Only the bone anywhere near the stem of the prosthetic was destroyed.
He was really adamant that in his opinion, that type of prosthetic should NEVER be used in a child. It should only be used in the elderly, as they will ALWAYS fail and need to be revised. He travels around the country lecturing against these prosthetics and teaching and training about the kind of prosthetic that he does believe in and ONLY uses in his patients, which is called the 'Biomet Compress System'. He said that if it were HIS child, he would NEVER use the standard 'stem' type prosthetic and only use the compress system.
I was so upset that this was never offered as an option with our first surgeon. Our first surgeon actually told us that there were no other options and when we asked him specifically about other things that we'd heard of, such as rotation-plasty, he actually laughed and said that it was archaic and hadn't been done for 20 years. Of course, now, I know that isn't true. When I asked Dr. Randall WHY it wasn't originally presented to me as an option for Lillie, he basically said that not all drs. like to do this procedure because it's quite a lengthy process, is more complicated as it takes 12 steps to place the compress prosthetic rather than the two steps that it takes to place the stem one. It's not as profitable and frankly, the older doctors don't want to learn something 'new'... even though this compress process has been around since the early 90s.
This is the Biomet Compress System
http://www.biomet.com/orthopedics/produ ... ategory=17 <http://www.biomet.com/orthopedics/produ ... roduct=247> &product=247
The benefit of the Biomet Compress System is that it puts pressure on the bone, so the bone is effectively weight bearing at all times. Had Lillie had this prosthetic from the beginning, she would have healthy new bone growth instead of the hollowed out femur that she has now. I am so angry I can hardly stand it. There is NO need for Lillie to be having this surgery. It was merely the choice of a doctor that we trusted to tell us our options. Even if he DIDN'T offer this type of prosthetic because it's too difficult for him to install, he SHOULD have made us aware of the options, especially given the fact that we ASKED him repeatedly if there were any other options. He even knew last January that her prosthetic was loose. He told us that hopefully the bone would grow back in. Dr. Randall said that the surgeon KNEW that the chances of that bone regrowing were almost zero.
Now, the bone surrounding Lillie's stem is basically paper. It will have to be removed, as the stem has effectively sanded the femur down to nothing. Dr. Randall said that it would crumble in his hand. Lillie will lose another 4 inches of her femur next week.
I wanted to bring this up in case there are any parents out there who's children have not yet had their limb salvage and this info could help someone. I also would love to know who else has this type of prosthetic or the stem kind, and those who have had revisions... what was the reason the revision was needed and what was done at the time of revision?
Many of you know that we found out a couple of weeks ago that Lxxxx needs to have a revision done on her prosthetic, and our original surgeon wants to add a much longer prosthetic stem up higher into her femur, almost all the way to her pelvis, where now, it's at mid thigh. He told me that after the new prosthetic was set, the bone would 'grow back' into the area where her femur is now just an egg shell around the stem of the prosthetic. He told me that it is because of the chemotherapy and the fact that she hasn't been weight bearing for that year of chemo, that her femur lost the bone density around the prosthetic.
Gratefully, we had a second opinion last week from Dr. Lor Randall, a great Dr. who is pretty well known for his work. We didn't go with him originally, only because we didn't know of him until after Lillie's surgery. Dr. Randall looked at Lillie's x-rays and explained to us that it was not the chemo nor lack of weight bearing that hollowed out her femur, but the prosthetic itself. He told us that this 'stem' type of prosthetic is designed to fail and does fail all of the time. If not sooner, then later. He explained that the stem is basically forced up into the bone and with luck, the bone will grow around it, but it doesn't always happen, or over time, will loosen and need to be revised. When it's revised, the stem has already damaged the bone that it's been wedged into, so that bone is no longer usable, and the prosthetic now needs to go deeper into the bone to catch hold, and over time will also destroy THAT bone. The idea that the prosthetic failed because of Lillie's chemo and non weight bearing is an absolute lie. We realized that, while the chemo has thinned her bones, the bone DIRECTLY above the prosthetic was more dense and good. Only the bone anywhere near the stem of the prosthetic was destroyed.
He was really adamant that in his opinion, that type of prosthetic should NEVER be used in a child. It should only be used in the elderly, as they will ALWAYS fail and need to be revised. He travels around the country lecturing against these prosthetics and teaching and training about the kind of prosthetic that he does believe in and ONLY uses in his patients, which is called the 'Biomet Compress System'. He said that if it were HIS child, he would NEVER use the standard 'stem' type prosthetic and only use the compress system.
I was so upset that this was never offered as an option with our first surgeon. Our first surgeon actually told us that there were no other options and when we asked him specifically about other things that we'd heard of, such as rotation-plasty, he actually laughed and said that it was archaic and hadn't been done for 20 years. Of course, now, I know that isn't true. When I asked Dr. Randall WHY it wasn't originally presented to me as an option for Lillie, he basically said that not all drs. like to do this procedure because it's quite a lengthy process, is more complicated as it takes 12 steps to place the compress prosthetic rather than the two steps that it takes to place the stem one. It's not as profitable and frankly, the older doctors don't want to learn something 'new'... even though this compress process has been around since the early 90s.
This is the Biomet Compress System
http://www.biomet.com/orthopedics/produ ... ategory=17 <http://www.biomet.com/orthopedics/produ ... roduct=247> &product=247
The benefit of the Biomet Compress System is that it puts pressure on the bone, so the bone is effectively weight bearing at all times. Had Lillie had this prosthetic from the beginning, she would have healthy new bone growth instead of the hollowed out femur that she has now. I am so angry I can hardly stand it. There is NO need for Lillie to be having this surgery. It was merely the choice of a doctor that we trusted to tell us our options. Even if he DIDN'T offer this type of prosthetic because it's too difficult for him to install, he SHOULD have made us aware of the options, especially given the fact that we ASKED him repeatedly if there were any other options. He even knew last January that her prosthetic was loose. He told us that hopefully the bone would grow back in. Dr. Randall said that the surgeon KNEW that the chances of that bone regrowing were almost zero.
Now, the bone surrounding Lillie's stem is basically paper. It will have to be removed, as the stem has effectively sanded the femur down to nothing. Dr. Randall said that it would crumble in his hand. Lillie will lose another 4 inches of her femur next week.
I wanted to bring this up in case there are any parents out there who's children have not yet had their limb salvage and this info could help someone. I also would love to know who else has this type of prosthetic or the stem kind, and those who have had revisions... what was the reason the revision was needed and what was done at the time of revision?