Saturday, April 4, 2009
Thursday, April 2, 2009
Lauren's Appointment at Mary Free Bed
We went for Lauren's appointment at Mary Free Bed this morning. The doctor and therapist did an exam on Lauren, some of what they commented on we've heard before and some new.
The harness has been placed correctly. We go back to see the doctor for a recheck a week from Monday. She said usually the harnesses are used full time for 6 weeks. Sometimes there is a need for it to be worn for 3 months full time. She said everything else is fine with her hips and the harness should work as with any baby. She will have had it on for 3 weeks at the recheck.
Now for the difficult part with the fibular hemimelia. They think her right femur is slightly shorter. They think her knee is slightly smaller. The fibula stops before the end of the tibia and ankle which adds to instability with the ankle (but better than having no fibula as in some cases). The missing ankle bone causes instability and is what they call a "ball and socket" ankle. With
her condition the muscles, ligaments, etc. are lacking throughout the lower leg as well.
We have an appointment in the middle of July to go back and they will do some testing to check her growth. At that time they will be able to get an idea of the percentage of the difference between the two legs (by x-ray). They don't consider bone lengthening for anything more than 25%. The doctor said she would lean towards amputation because of the ankle instability. The therapist said she would not consider Lauren in the "gray zone" (between lengthening and amputation), that she would consider her an amputation candidate. They said it was because children have good outcomes when it is done young (preferably before they walk). And that they see the problems people run into when they just try lifts and braces. As far as the leg lengthening, there is not much info as far as long term outcomes.
The amputation they are referring to is at the foot, in front of the heel. That makes it so the heel and leg will fit into a prosthesis which goes up to the knee. The prosthesis supports the leg and ankle. As the legs grow the affected side ends up stopping about half way down the other lower leg. The amputation route usually means the one surgery, then fittings whenever a new prosthesis is needed.
The harness has been placed correctly. We go back to see the doctor for a recheck a week from Monday. She said usually the harnesses are used full time for 6 weeks. Sometimes there is a need for it to be worn for 3 months full time. She said everything else is fine with her hips and the harness should work as with any baby. She will have had it on for 3 weeks at the recheck.
Now for the difficult part with the fibular hemimelia. They think her right femur is slightly shorter. They think her knee is slightly smaller. The fibula stops before the end of the tibia and ankle which adds to instability with the ankle (but better than having no fibula as in some cases). The missing ankle bone causes instability and is what they call a "ball and socket" ankle. With
her condition the muscles, ligaments, etc. are lacking throughout the lower leg as well.
We have an appointment in the middle of July to go back and they will do some testing to check her growth. At that time they will be able to get an idea of the percentage of the difference between the two legs (by x-ray). They don't consider bone lengthening for anything more than 25%. The doctor said she would lean towards amputation because of the ankle instability. The therapist said she would not consider Lauren in the "gray zone" (between lengthening and amputation), that she would consider her an amputation candidate. They said it was because children have good outcomes when it is done young (preferably before they walk). And that they see the problems people run into when they just try lifts and braces. As far as the leg lengthening, there is not much info as far as long term outcomes.
The amputation they are referring to is at the foot, in front of the heel. That makes it so the heel and leg will fit into a prosthesis which goes up to the knee. The prosthesis supports the leg and ankle. As the legs grow the affected side ends up stopping about half way down the other lower leg. The amputation route usually means the one surgery, then fittings whenever a new prosthesis is needed.
In our recent fibular hemimelia internet searches, we've come across information on Dr. Paley in Baltimore. He specializes in conditions such as FH and performs procedures to reconstruct the ankle, which he calls "Super Ankle" procedures. We asked at Mary Free Bed if they knew anything about Dr. Paley in Baltimore. Dr. Maples said she knows him and he is good surgeon who deals with lengthening all the time. She said he will do longer lengthening than she will. She said to go see him if we are "curious" but to go there knowing that he is for limb salvage all the way and will recommend it over amputation even if it means numerous surgeries.
I think that about sums up our visit. Now we plan to get more opinions in hopes of hearing different ideas, options, etc. I don't think anything we hear is going to be a decision we want to make but we want to figure out what is going to best for Lauren.
Monday, March 30, 2009
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