I was just curious to see if anyone else that has undergone limb lenghtening is suffering from chronic pain? I'm only sixteen, but ive had about thirty surgeries. I had the Phoenix implant. Two of them actually, as the first failed. The Phoenix is an internal prosthetic which lenghthens via magnet. Anyway, i remain in constant, aching pain. Has anyone else whose undergone limb lenghtening, or any other procedure, suffered from such pain? how do you deal with it?
Comments
Phoenix uncommon with PFFD
The Phoenix is typically used after cancer has destroyed healthy bone to lengthen limbs and for some reason is rarely used for PFFD treatment. You may find Phoenix specific advice at cancer survivor web sites.
I had an amputation (age 7) and leg shortening (age 9-12) to be able to wear an above the knee prosthetic. When I was about 17, I started having constant severe pain, especially after lots of walking. The doctor x-rayed and recognized it as the head of the femur hitting against the edge of my pelvis as my leg abducted (swung out) to swing forward. My hip and pelvis had been pieced together through a series of surgeries before age 5 and the problem had not been rechecked as I grew. I had surgeries to improve the situation, which lessened my pain, but the last surgery never healed so I cannot bear weight on a prosthetic. I still have pain and it is made worse by severe weather, sleeping on a poor quality mattress and if I don't prop my leg on a pillow at night. Some things that lessen my pain include: massage (by a medical massage specialist--insurance will pay for it usually), elevating my leg from time to time during the day (sometimes I even just put my other foot under my "bad" leg), wearing clothes with a minimal leg seam inside (I have no idea how this makes it hurt more, but it does....so I buy pants without lots of excess fabric on the inside of the leg seams), and of course I have a variety of over the counter and prescription meds that my doctor and I have found to work well, but these do not "drug me".
I hope you get some more suggestions and find someone with the implant, because I know how distracting the pain can be.
thinking of amputation
We have a daughter that is just 2 and are considering amputation of her right foot so she can get an above the knee prosthetic, would you advise us not to and have you any more advice for us? Thanks. Louise.
No!
I do not advocate amputation in any case. Even if your daughters life will be more difficult with a shortened leg, lengthening is almost always the best option, i think. At least you have your leg. She will thank you when she's older. If you don't fully understand, that's all right. There's just something about feeling...intact. You don't get that with amputation. With amputation, your daughters treatment is decided. With lengthening, treament can adapt as medicine evolves, just as my treatment did. If you have any questions, feel free to ask. I'll try to check this thing more often.
-Z. Rufa
amputation
My daughter just turned three and we had her right foot amputated when she was 15 months old. We were given other options such as the Van ness rotation but we decided that amputating would be better for her. We were hoping she could do the limb lengthening but because her right femur was so small we were told if they were able to do it that her bone would be very fragile. She can now run and play with her two older sisters with the use of her prosthesis. The down fall to not having her foot removed and being fit with a prothesis is that her foot will continue to grow and it will be hard for them to fit her correctly. We are very satisfied with the decision we made and our little girl is very happy and is doing all the normal things a three year old does.
Glad to Hear It
I am glad to hear your daughter is doing well. Seeing as how you've already begun the path of amputation, i would suggest this; allow your daugther time to grow. Let her decide if she wants the foot amputated or the Van Ness. If problems arise, then obviously, a choice will have to be made. But for now, I recommend waiting and allowing her to choose for herself.
pheonix
ginette mckenzie
we were advised to have the pheonix at one time but didnt go thru with it cus i couldnt findany1 else who had had it done
was this with paley?
jees 30 surgeries, poor you
i would love to hear more
how much have you lengthened your leg
r n done now
my sons first lengthening was horrendous with an ilizarov but the next two have not been too bad
mckenzie794@hotmail.com
pheonix
hi
the pheonix was suggested to us but we didnt go with it as i couldnt find anyone else who had had it done and i prefer to speak to patients and parents who have already gone thru the surgeries before we have them, I am really really curious about it though and what it entails, did you have this at Sinai?
were they able to put you in touch with anyone else who has had the pheonix ? do you or your parents have any idea about how many patients have had lengthenings this way, id love to know more
Ginette mckenzie794 @hotmail.com