Surgery Decisions

Choosing the type of surgery that my daughter will have to face seems like a daunting task. For those of you who have been faced with the choice of bone lengthening or amputation, what did you ultimately decide to do for your child? What led you to that decision? Are you happy with that decision or do you wish you had chosen a different option? (My daughter is 6 months old and has been diagnosed with PFFD in her left leg.)

Also the Patient

I am also a patient born with PFFD. I'm 22 and have never had any prior surgeries. Amputation has been mentioned several times growing up but I never felt like it was right for me. I just discovered Dr. Paley a few months back, did some research and booked an appointment with him. The day he told me he could correct my hip, knee and 10 inch length difference was a day I will remember for the rest of my life. I have booked my first surgery for Jan 12th. I should only have to have 3 surgeries total. The first will be to correct my hip and knee. The next two will be lengthening. At most it will take 3 1/2 years to complete, but I will be active in between surgeries. I will just have to take about a year break in between & a lot of physical therapy. I'm so happy I waited to have anything done. Depending on the situation there is a lot that Dr. Paley can do. Sometimes lengthening isn't a good option, it just depends. However, Dr. Paley is the first and only Dr. that has offered me another alternative to amputation. He gave me hope, not only that but he said it was "EASILY CORRECTIBLE." I had never heard that before in my life. He was so calm and sure of himself too. I didn't hesitate to book my surgery and it can't get here soon enough! If you have any questions please feel free to contact me on here or at babybrunette0819@aol.com. I hope I have been somewhat helpful.

God Bless,
-Julie

I too am talking from the patient point of view

Hi Pursuejesus,
I would have to agree with some of the other advice you were given. I think for you to better grasp the decision you have to make it would be a great idea to get different points of views and information from various physicians. I too was diagnosed with PFFD as an infant and have worn a prosthesis for as long as I can remember. I can tell you that in the beginning it was definitely not pretty (the look of the prosthesis) because I hadn't had any surgeries. My parents decided it would be best if I were old enough to make the decision for myself. There are different variations of PFFD I don't think lengthening would have been very possible for me and I didn't want to have to go through multiple surgeries. So with that my options were to not get anything done, Rotationplasty, and Amputation. Once I heard that there was a chance my food would try to correct itself over time with the rotationplasty surgery I decided that wouldn't be for me and I opted for the more cosmetically appealing option (being an almost teenage girl) and decided the best thing was for me to have the amptation/knee fusion. For me it was the right decision and I was so happy that I was given the opportunity to make my own decision. I can tell you that you will be amazed at your daughters abilities and determination. My mom still tells me stories about how I shocked her by doing things she herself thought I wouldn't be capable of. There are so many options out there to choose from. I hope this helped but again it would be best to get as much information as possible from various physicians. Working with Shriners worked wonders for me and they are used to working with pediatric patients so speaking with one of their physicians or a few would probably be helpful.

I am not the parent, I am the

I am not the parent, I am the patient but at 22 years old, I think I can give you one bit of advice. No matter what - the surgery process will be harder on you than it ever will be on your daughter. It was far worse for my parents to watch me hurt and have surgeries and all than it ever was for me to go through it. I would encourage the bone lengthening and Dr Paley for a surgeon. I started very young and the technology wasnt really around yet so I am still working on lengthenings. However things have progressed so far that you can get her started very young and done at an early age. The earlier the better - bone heal slower, things come up, social lives start at older ages! If you have any questions please feel free!!!

Surgery Decisions

Hi Pursuejesus,

Congratulations on the birth of your daughter. I know you must be feeling overwhelmed with having a new baby and dealing with this news. I want to let you know that your daughter will be alright. The future is still as bright as it was before you found out. My son is turning 8 soon and just finished baseball season and is learning to ride a skateboard to occupy himself until hockey season starts.

Our son was fitted for a prosthesis when he pulled himself up to stand. He didn't walk in this one but it did allow him to begin to use the muscles that he would need to walk. Some children depending on how much discrepancy there is start off with a shoe lift. We didn't go that route because our boy needed extra stability at his hip.

I don't know where you live but I would recommend seeing a few different doctors before you make any decisions. It is important to find someone who has some expertise in this area and to learn about the different options available that would be best suited for your daughter. They range from doing nothing, amputation of the foot, lengthening, or rotationplasty and probably some other things that I don't know about. I know people who have done each of these and the constant thing is their children are all doing well.

If you would like to know more or ask questions, please feel free to email me at nette@quickclic.net

Take care

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