alright I've had better days I need info we took shane to shrinners today they want to amputate his foot from his heal to his toes I hate that option he has a perfectly fine foot!!!!! I would like to here from some of you who have had amputatins like this see I am confused where shanes defect is in his femer his knee are at 2 different spots how is cutting off his toes going to affect him with a prosticet on with his knee being at different length bending and sitting yeah he will walk but with his legs bending at 2 different spot how will this effect him!!!! Number 2 how much dose leg lengthing really cost and how and the heck do you all afford it with it not being covered by insurance!!!!!! please give me some insite to this I am so lost right now on what to do!!!!!! oh yeah have any of you had other options that might be help full to me shane is expected to have a 4in difference at the end of growth right now it is only 1/2 inch!!!!!!!!!!!!!!!!!!!!
re: I need info please for Shane
Did they give you a reason as to why they want to do the amputation? Can he wear a shoelift or does he need a more elaborate prosthesis?
My daughter's lengthening is covered by our insurance. Have you talked with your insurance provider to see if they can give some sort of exception for your son's situation? They may just think it's for cosmetic purposes instead of medical reasons.
Beth
bethreinert@yahoo.com
Trust yourself
If something doesn't "add up" with a doctor or even a group of doctors, then trust yourself and look for another opinion or just wait to see what happens as he grows.
I am a 36 year old with PFFD amputation of toes (I have my ankle), then followed by 18 more surgeries to make the prosthesis fit better. My number ONE criticism for the Shiner's St. Louis (who did all my surgeries) was they did not lay out the complete care plan and I am not sure that there ever was a complete plan. They presented almost every surgery at the last one I would need. In the end, my hip was not stable enough for weight bearing as an adult. I wore the prosthesis from age 8 to 16 only. My parents had many questions and were actually discouraged from second opinions by the Shriners staff by telling them the care would be too expensive anywhere else....now my parents understand that their military insurance would have paid almost all the costs.
Trust yourself and seek answers that make sense for your child. You are a better advocate for your child, then the doctors.
Best wishes,
Leatta
Help for Shane
Hi my name is Cassidy and my son has PFFD in the right leg. He has a very small femur and is missing the fibula ( small bone in the lower leg). There is a standard that most doctors follow on the number of inches when amputation is recommended. Otherwise they should be able to try lengthing. I would recomend discussing the reason for the doctors proposal. Now may be better. im sure you were much like i was. I heard nothing past the word amputation. My mind was busy trying to wrap itself around that word! My son's right ankle is at the same level as as his left knee. At the present, he wears a prosthetic that his leg and foot goes into with a fake knee and foot at the end. He hasn't had any surgeries yet and though we are almost certain what path we are going to wind up taking,we still have one more doctor to consult. Take the time and research PFFD and the different types and treatment options for each type. Also i would make sure to write down any questions you may have to the doctors ahead of time because us mothers tend to feel fine one minute and really out of control the next.Just dont feel pressured into anything. hope this helps good luck. How old is your son?
I am a bit surprised that
I am a bit surprised that they are talking amputation for that small of an amount of difference in leg length. I am an Atkins class D and my right ankle is just about knee height. I am 61 and never had any surgeries due to my PFFD. My foot is pointed downwards at the arch to allow for the fitting of a prosthesis but this was not a surgical process.
Jerry
Amputee for 11 yrs
Hi my name is Sheila and I too was a patient at Shriners. I have the same condition as Shane. By about the time I was 3 doctors were suggesting an amputation. I didn't have one until almost 8 however. As far as insurance goes just talk to Shriners about how that will work and what you will have to pay. But also you have time you don't have to rush on a decision right now. Talk about options with the doctors that are tailored to you son. For me lengthing was improbable and would cause more complications. When it comes to his life, he can have as much or as little as he wants. 3 months after I had my surgery I was playing basketball and then i cheered for 5 years. After so many years it in some ways is like I never lost a leg. I live a very normal life and I do everything everyone else does. It's just all about your attitude and approach to life.
If you don't mind me asking... which shriners are you at? If you are at greenville I would be more than welcome to meet you and talk with you or if you are there you can speak with Lina the care coordinator who can get in contact with me for you. I am willing to answer any questions you have.
hello
hi sheila yes we went to shriners in greenville we live in a small town in SC called bishopville are you in SC or do you travel here my e-mail is sassycountrygal25@yahoo.com would love to talk with some one who has experienced this sorry I crashed on the subject for a while to try to regroupe my sences and think calmly about it but I still feel amputation is the wrong way to go in my heart for my sin situation if you have myspace you can find me their under sassycountrygal28 I have plenty of pic of shane their right now if you looked at him you would not think anything was wrong with his leg at all that why I think its so hard to concender amputation
thanks
Tara
Get a second opinion before
Get a second opinion before you do anything! The dr's were telling us that they didn't think lenghtening was an option for our daughter so I sent Dr Paley her x-rays and he said she definately could have lenghtening done. She has a much greater discrepancy than your son. So do your research before making your final decision.
Info for Shane
We too were told that amputation was our only option, but we didn't want to rush into that decision so we started our search which lead us to Dr. Paley and his team in Baltimore. It doesn't sound like there is going to be a large enough discrepency that lengthening wouldn't be an option for Shane. As far as insurance you might want to start looking into qualifying for Social Security/Disability coverage to help with covering the costs. Also your home state may have some other insurance coverage that you haven't heard of yet. There was just something passed in Washington that was supposed to help families get special insurance coverage for children. Also you can try to contact your local church and see what options they might have. We have heard of some churches that can host foster families in other states during medical proceedures. In our case there wasn't any surgeries that could be done until McKenna was almost 18 months old, so you definately have some time to get the financing in order no matter what treatment option you choose. Just make sure you are comfortable with the medical team you choose as this will be a long term treatment plan and trust your heart.
Hope this helps
I am also a PFFD patient who hasn’t had an amputation. My left ankle is just below right knee. At age 11 the doctors wanted to amputate my foot and turn my ankle around to be used as my knee. They said it was for cosmetic reasons. My parents were against it since so many other the amputees (from accidents) in the hospital with me who had so many surgeries to fix problems, they didn’t feel it was a good idea. They had the opinion once it was removed it was final.
I’m 51 and still have my foot. They only problem I have are finding pant legs wide enough to go over my foot. Luckily wide leg jeans are back in fashion. I don’t regret the decision my parents made about amputation.
So many other factors have to be considered. Is only one leg affected by PFFD? I know since both my legs are affected amputation would cause more stability problems.
Just remember there is plenty of time to make a decision. Get as many opinions as you need to feel comfortable with your decision. There is a difference between cosmetic reason and medical reasons. Ask many questions and get them to justify everything to you. Don’t fall for the lines “we feel” it would be better in the long run. Also remember many physicians haven’t dealt with many PFFD patients so they are using book knowledge and not personal knowledge to guide you. If you are uncomfortable with making a decision, then get more information until you are comfortable.
I wish you luck.
We just saw Paley this weekend...
Our Daughter Emily (6 1/2 months old now) is projected to have about a 10-12 inch discrepancy total. Dr. Paley in Baltimore classified her as a 1b this weekend. Get his opinion before you do anything, please. He has so much experience and after getting all of the facts from him - as well as from other people with this deficiency you can better make a choice. If your son's discrepancy is only going to be 4inches total He may only need 1 legthening?? (Emily may need 3) Or just a shoe lift until he decides what he wants. I would contact Paley. Look him up on the Rubin Institutes website and send him an email explaining your sons circumstances. I'm sure he or one of the Drs in his group can help you. This is the path we are following. I know some have not had that option b/c of the structure of the hip/knee joints or the amount of femur in the leg. Just talk to him first, It doesnt hurt. Good luck. You can email me if you'd like and i'll send you more info about our visit with him. ktjean3@hotmail.com
-Kate