Hi Nicholas is 5 /12 unilateral pffd. Was never told classification and only got estimate descrepancy form doctor at last visit when we pressed- 20 cm. Have been seeing unc hospital pediatric orthopeadics and had 2 hip surgeries: Osteotomy I believe. Have had many unanswered questions. Don't know where to start or how to get proper support to address choices, consequences of choices and what we need to consider psychologically for him as well as estimated logistics (if we go to Dr. Paley in FL, how long will we be there, what will it cost, does insurance cover all doctor costs similarly? Dr. P seems to be the expert, does that mean he charges more?) . Son chooses not to wear shoe, which is fine with docs as long as he does stretches so that muscles don't tighten. Is that okay? Friend said that not treating causes the rest of the body to overcompensate for his walking and movement which could cause additional problems? Is that true? About 4 inches difference now, left leg is short. Hip angle is okay, apparently. Knee in good shape. Ready to seek help and decision regarding a series of surgeries (2 lengthenings they say, and maybe stunting growth of long leg) or do a prosthesis, foot intact. Do not want amputation. Ankle, foot and lower leg almost 100% nor mal. Thanks for reading and please post or email comments to Tanya at tmalaci@yahoo.com I'm in Wilmington NC area. Anyone nearby?
Comments
your son
Tanya,
You need to feel comfortable with the doctor you choose to treat your son. That doctor should be able to fully answer all of your questions to your satisfaction. It the doctor fails to do this, you may want to consider changing doctors.
Dr. Paley is an option. There are also other options available: Shriners Hospital (a free hospital) (I think the closest one to you is in SC), Dr. Davidson at Children's Hosptial of Philadelphia, Dr. Standard at Sinai Hospital Baltimore. There are many more doctors out there. To find out financial costs, you will need to contact the doctor, your insurance company , or more likely both.
I have heard that it is OK for the pffd patient to walk without a lift/prosthesis occassionally. If it is done too much, though, the alignment of the spine could be damaged. I did not hear this from a doctor, just from other parents. So I might be incorrect about this.
I wish you all the best.
Beth Reinert
bethreinert@yahoo.com
Great info, thanks
Thank you Beth! Since this post I have gotten more information. I am feeling so much better. Thank you to those who have assisted! Insurance covers all "in network" docs the same, so if we use an out of state one (Dr. Paley or Dr. Herzenberg, for example) the out of pocket is the same as if we continue with doctor at UNC. Dr. Paley has numerous videos posted on his site at www.limblengtheningdoc.org under the conditions page, and Sinai Hospital's site (Int'l limb lengthening center) has a lot of helpful patient tips about treatment etc. I have emailed both Dr. Herzenberg and Dr. Paley and have gotten prompt responses. Medical records and xrays are on their way to those experts.