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Going through the stages of amputation

My name is sinead and i'm sixteen. i have PFFD on both of my legs but my left leg is longer. I was born to a diabetic mother. When i was born my mother didnt really know what decison to make. The doctors were trying to lean her into amputation. She opt. not to, she wanted me to make the decision when i was old enough. so for sixteen years, i've wore a lift. It's been very hard. with the lift, i can't wear normal clothes only long pants. by that, i've become self-conscience and developed low self- esteem. I wouldn't feel comfortable in large crowds or at school either. So at the end of March, i finally told my mother i wanted to do something about it. We went to shriners in florida, and they said that i had three options. One: being leg lengthening , Two: wearing a prothesis to make it the same length as my other leg, and Three: amputation. we did the x-rays, and found that i wasn't a condidate for lengthening because hip socket wasn't strong enough. i would have to have my femur repaired because it wasn't attached to the socket. It would repair a surgery before my actual lengthening. My mom didn't want me to do it during school. then we went on to the other option: a prothesis. I went to get fitted. In the begining, i thought nobody would be able to see the prothesis through my jeans. but it's a little noticable. All i could think about was " great another thing to worry about". I'm all about how I look. Maybe when I graduate I will have the lengthen done. It's a year away. I heard that it really hurts. What complications go along with it? I know you're prone to infections and you muscle bei ng damaged. I would like some feedback to those who have gone through it. Oh yeah, is it harder for an adult to go through it?

Comments

Do you currently have pain how? Is your gait typical (do you limp much)? Do you have problems with skin break down when it is hot?

If you do not have pain or skin break down, then you need to think twice about amputation as a cosmetic fix. There are frequently phantom pains after the surgery. The new stump and skin in the prosthetic will break down at times and doctors recommend you do not shave this area because of the risk of an ingrown hair causing a bad infection. You think your current leg is ugly....let me tell you...an unshaved leg at the pool is worse! Your circulation may also be affected which means the newly created stump will be colder due to the cauterization of blood vessels.

What age did you have yours done? Could you tell me how the prothesis look? I'm really interested in that.

I sent you a private message with details.

Dear Sinead,

I would just like to suggest perhaps getting another opinion. We have been working with Dr. Paley and his staff in Baltimore Maryland, and we have seen them do alot with repairing hip sockets so that lengthening is an option. My daughter McKenna had the "Super Hip" proceedure done when she was about 3 years old and has had two lengthenings since then and so far so good. If you want to contact them their # is 1-800-221-8425. I am sure you are very tired of dealing with all these doctors and all, but since you are looking to make such a big step in your life then perhaps you want to check out all the options before you make the final decision. Keep us posted on your thoughts, and if there is anything we can do to help just email us at ChuckBerg@msn.com.

Sincerely,

Chuck

Does Dr. Dror Paley have a email address or website?

Hi Sinead
My son is 15, he will be 16 in March so you are both around the same age.
I urge you to contact Dr Dror Paley at the Sinai Hospital as Zach has NO hip socket.
We started lengthening Zach's leg when he was two. His last surgery was in October of last year, and it has been a long road, due to a couple of complications not related to the hip, just minor stuff, but Zach was at the point of considering amputation as well, he posted a similar question to your just last week.
You can get in touch with Zach directly at littlerufa@yahoo.com
maybe the two of you could discuss concerns and questions for each other, I'm sure you must have a few....
As a parent I would stongly encourage you to get in touch with Dr Paley. The number to the hospital is 1-800-221-8425 or you can contact me directly at narelle@cerowagency.com.
Good luck