Hi,
First of all let me start by saying that my son is a bilateral arm amputee and has PFFD in his left leg. All the doctors that we have seen told us the only option we have is to amputate his foot. But, my son recently saw Dr. Paley. He has greatly changed our outlook on Landon's future by giving us other options. Landon's has PFFD class C. His hip was not completly formed but Dr. Paley said that he could do a surgerical procedure and fix the hip. Has anyone ever had this. Next Dr. Paley informed us that he could reconstruct his foot and correct it (he is missing the ankle and pinky toe and also missing the fibula). Has anyone ever had this type of surgery done? Even better he can do this all in one surgery.
The reason I ask these questions is because during our visit with Dr. Paley we didn't ask many questions We were in such shock that this Dr. was actually going to help us that we were speachless. But we will be going back in about a month to discuss the surgrey futher.
Does anyone have any comments about any of the procedures. We are excited that a corrective surgery can be done but at the same time scared of the surgery and its risk.
Thanks so much,
Paige
Paige, My son Bryant has
Paige,
My son Bryant has PFFD -right leg. Last year he had reconstruction on his hip/knee/ankle when he was 18 months old. Dr. Standard and Paley completed that surgery. We just got back yesterday from Baltimore because Bryant had another surgery on his hip. Just from his surgery last week Bryant gained 1/2 an inch. It has been amazing how much of difference the surgeries have made!! It is a very tough process but well worth it. We plan to do his 1st lengthening next March.
When we first went to Dr. Standard we felt just like you did. We were shocked that they would work on Bryant because we had already been told our only option was to amputate. We are very thankful that we have this option!!!! I wish you the best!!! If you have any other questions please feel free to ask!
Staci
Thanks so much for your
Thanks so much for your comment. I am glad everyting is going well for your son. How many surgeries has he had and how do you cope, and how does he handle it.
Paige, This is a tough
Paige,
This is a tough question to answer. Last fall when Bryant had his 1st surgery it was very tough. He was in an external fixator for 2 months. I believe one of the reasons it was so tough was that we had very rare complications that required another surgery. If it wasn't for that I believe the process would have been much easier. Once the fixator came off Bryant had a cast that covered the whole leg and around the hip. This did not bother him like the fixator.
The surgery Bryant had last week seemed MUCH easier than before. It definately did not seem to phase him and he is up and about now. He is even trying to walk with his cast on. You somehow just get through everything. Soemtimes for me planning and waiting for the surgeries are almost worse than the surgeries itself. We have wonderful friends and family that have prayed for us so much and given us support. I just feel like we need to do everything that we can to help him. I want to try everything possible to save his leg. I wish you the best!!! Staci
Complications common
Statistics from Paley's group indicated that complications occur in 70% of cases. Of those 50% were serious enough to require further surgery. detailed here
While complications may
While complications may occur, the end result is so worth all the effort! We've experienced minor complications, however, my son has handled everything with ease. The complications are harder on my husband and I than on Bryant.
To give my son the possibility of walking on his own two legs is worth the risks and complications. I know this a decision that every family must make and in the end,whatever choice made, the child will be fine with love and support from his/her family.
Thanks
I would like to thank you all so much for the reply. I think you are right about the time preparing and waiting for the surgery is harder than the surgery itself. When Landon was 6 months he had open heart surgery. We handled this surgery pretty well because we had trust in the Dr. and new this surgery had to be done there was no other option. I guess why the hip/knee/foot surgery and lengthing is so hard for me is because of the complications of course and putting him through this knowing that it may be a complete failure. But at the same time Landon was born with no arms so losing another part of his body is an unbearable thought, thats why we have decided to go through with the surgery. It is so terrifing for me, just listening to your replies brought tears to my eyes. I am so happy to hear your success stories, it gives me so much hope. I will definatly keep you updated on our next visit with Dr. Paley and thanks again for sharing.
Paige
Our Experience with Our Daughter
Hi Paige,
I don't know much about re-construction surgeries, all i can tell you is our experience with our daughter. Jess is almost 3 and she has Bilateral PFFD class D. No hip no knee, no fibula and no ankle. Not a lot really but lots of brains and cheeky smiles instead :)
Due to the extreme nature of her condition reconstruction and lengthening was never going to be an option for her. We made the very difficult decision to go for amputation of her feet and it was done in January this year. It was very difficult and we went through every emotion you can imagine but she recovered amazingly well and is now up and about on her prosthesis, not quite solo yet but she's working on it. It's never easy to make decisions on behalf of your child especially when the results are so extreme. however we made the best decision we could with the information we had at the time and you can only do the same, whether reconstruction or amputation. I don't know if there is ever a right or wrong decision, just choices and more choices beyond that. we take each one carefully and prayerfully and trust. If you need anything just write.
God Bless you and your family
Jo X