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J's Story

Original at http://home.att.net/~janice7846/medical.htm

I was born with many orthopedic problems which includes a condition called PFFD, (Proximal Femoral Focal Deficiencey) which caused a limb length discrepancy of my right leg. I have been searching for many years for newer procedures that would save my leg and allow me to walk without a leg brace. Medical science is improving every year but many of us are making decisions now and choosing from the limited options available for a leg length discrepancy. There are various levels of amputation, Van Nes Rotation, no surgery, and a newer, more controversial procedure: limb lengthening. Very few doctors are skilled and experienced enough to perform this procedure.

Limb lengthening sounded like it offered me the best chance at almost total reconstruction of my right leg and possibly give me almost normal use of that leg. Many people know that I went to see Dr. Dror Paley at the Maryland Center for Limb Lengthening and Reconstruction (MCLLR) in March of 1997. Many of you know that he offered me more than I had hoped and said that he could lengthen my leg completely even though I needed around 7 inches or about 15 cm.

I have never until now told the public the results of my limb lengthening surgery of September, 1997. The pressure from myself and from others to "keep quiet" has been enormous and I thought that by telling the truth I would cause innocent babies to have their legs amputated. People who know me know that it breaks my heart to see little ones hurt or suffer. However, I now believe by keeping the secrets I know, I may be hurting children and adults more, or in other ways, and I am hurting myself by not telling the truth. This is on the internet partially for my own mental and emotional healing and to inform others so they will understand more what to expect.

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Here is the painful, bitter truth...

Dr. Paley put me in a wheelchair, possibly for life!!! I walked into the MCLLR in September, 1997 and was wheeled out in a wheelchair in November, 1998 after Dr. Paley declared me a "success", "better off" than before the surgery, and told us what a "wonderful" job he did.

Comments

I'm new to this site, i cnnot believe what i have just read. We are meant to be going to meet Dr Paley next week about our 22 month old daughter, and you have just made me think very long and hard about it till next week. Im so sorry to hear what has happened to you, how are you coping now?

I am shocked at what i have just read. I have had people writing to me asking me for advice and mentioning Dr. Paley, i hope they all read your story so they can make an informed decision. Best wishes for you and your family

Amy
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