Gosh I'm not sure what to write, where to begin. I'm 32 years old. I have neither the socket nor joint of my left hip. I am also missing my right arm and my left one is significantly deformed. I was reading some of the entries and have no idea what they were talking about. I'm sure there are technical terms to what I have just don't know them. Another thing that struck me about this sight is that I had no idea there were so many forms of PFFD. Anyway, I wore a prosthetic leg throughout my childhood. My parents decided to let me decide what surgeries, if any, were best for me. So, when I was17, my Dr at Shriners, LA, approached me with an "experimental" surgery of lengenthening my femur and tibia/fibia so I could get rid of the prosthetic. They had never done a lengthening on someone with PFFD. The idea of ditching the horrid prosthetic was to great to me. I agreed. What was to be a 10 day stay at the hospital ended up 6 months, and 2 years of procedures to gain 8 in. in length. It was a blessing and a curses. I lost a lot to the length over the years and now need a shoe lift, still better than a prosthetic though. I read a question from a young girl of what to expect when she got older. Well, everyone is different but life is pretty good. Have a career, I teach, get married if you find the right man. Yes they are out there, I found several until the perfect one came along. I've been married 8 years. Just do not let PFFD or anything stand in your way. I do have my issues, which is why I'm starting this blog thing. Mainly pain.
Comments
Welcome to the community!
Hi, Carmie! My name is Linda, and I'm 30 years old. I have bilateral PFFD, and like you, I had the "experimental" lengthening. But, mine was done at the Alfred I. DuPont Institute in Wilmington, DE when I was 11 (1987). Also like you, I've had some negative results from the surgery and had to return to using a shoe lift in addition to now wearing a leg brace and using crutches or a wheelchair to get around.
I'm a teacher, too! What do you teach? I teach high school Spanish in a rural community in PA. I've studied and lived in Mexico City, and I taught in a bilingual public school in Boston for 5 years before moving back to the area where I grew up three years ago. I always start off every school year by explaining my disability to my students, showing them pictures of me at various stages, including the leg lengthening (they're always so grossed out by the Ilizarov pictures!), and letting them ask any respectful questions that they may have. The kids respond well to it, and I find that it helps take away some of the "mystery" of the disability which often is the cause of inappropriate (i.e., mean) comments. Kids might call me a b**ch when they get in trouble, but in 8 years of teaching, I've only had one student make a mean comment about my disability when he was angry (and he later apologized in tears).
I think that most of us with bilateral PFFD or PFFD deal with some level of pain on a daily basis. I know that I have for my entire life. I've developed osteoarthritis in some of the joints on my left leg (the worse leg), which causes a fair amount of discomfort every day. But, I manage it pretty well. I take Aleeve every morning which definitely helps (I want to avoid a prescription if I can). I usually walk around my classroom without my crutches, but if I"m having a particularly painful day, I use them around my classroom. My pain tolerance is pretty high, as I imagine yours is.
If you'd like to talk more, please respond here or send me a private message. Maybe we can exchange emails.
Take care,
Linda
Thank you for sharing!
Your posting has come at the perfect time in my life! I am 32 and my 16month old baby has pffd affecting her right leg. We just had a doctors appt Thursday and he said he would not lengthen, he wanted to amputate the foot, fuse her knee and fix her hip for mobility and give her a prosthetic. We have sent her x-rays to dr. paley in Baltimore to see if he would advise lengthing. We are so incredibly torn between the two decisions for her. The main reason this doctor said to amputate is because we don't have enough adults with pffd that had lengthing years ago to share with us if they have pain and how mobile they are. So I am so excited to hear more from you. I would be more than happy to call you as well to discuss my long list of many questions, if you are comfortable sharing your number. If not, email is fine too! I am anxious to hear more from the 30 year old teacher that responded to you as well!
At least a dozen
There are at least a dozen adults (age 25 and over) on this web site. We all have had different treatment plans and different results so their is a lot of information available even here at this web site.
I am 34 and have pffd and my arms are affected. I can no longer wear a prosthesis because of a surgery which did not heal at age 17. The surgery was to increase range of motion and reduce pain. I use crutches and a wheelchair for mobility depending on the situation. Like all the adults on this site, I have a very active and typical life. Feel free to check out my blog and photos. I also have a simple diagram of the different types of PFFD attached in my photos.
someone else with upper limb differences
Hi Carmie, i've just been having a read on here and i thought i'd say hello. It is always interesting to hear of somebody else with PFFD who's arms are affected. You are right there are so many different forms of PFFD, some with other issues or not. I did read somewhere that upper limb deformities are more common in bilateral cases. I'm missing my left arm from the elbow, i'm bilatteral PFFD and an above knee amputee on my right side since 9 years old, following a hip operation at 7 years old that left my leg stiffened up at the knee at an awkward angle, we decided a load bearing stump was going to be better to carry on wearing prosthesis, which i did up till 12. Now all i use is a stump socket on my arm to allow me to push my manual wheelchair. Do you wear any kind of arm prosthesis, and what have you got on your left side? On my left arm i have always been able to wiggle my strump end, which has always caused such hilarity, i may try an include a picture! :)
Your totally right PFFD should never stand in your way of doing anything. Wise words indeed
Dave Bailey :-)
Arms
Dave-
I am not bilateral....left leg only, but I think my arms are similar to yours....pardon me, but I laughed at your description of your left arm because it sounds exactly like mine. (My pictures are attached to my blog.) My PFFD was treated with amputation as my folks were told by the Shriner's in St. Louis that amputation was the only option. I had 22 surgeries to try to create a thigh and the next to last did not heal so I cannot bear weight on my prosthetic so I don't wear it at all anymore...to me if is an unecessary and awkward 7 pound accessory. I tried an arm prosthetic when I was 3 and did not like it so I never tried one again. I use crutches and at times a wheelchair to get around, and I have a very typical and active life. Like Carmie amd Linda my main remaining issue is pain management.
Arms
Hi Leatta,
i had a look at your photo's, yes your left arm is very much like mine, your right is also affected, my right is unaffected, so you are both arms, one leg i'm both legs one arm. Be interesting if Carmie put's some pics up. I was going to post a mr stumpy photo (funny face on my arm) , but i don't seem to have the option to upload pics anymore? is that just me are have things changed on here?
I must just be lucky compared to yourself Linda and Carmie, pain management isn't something i have an issue with. My phantom pain is very infrequent, and even at it's worst, doesn't require medication or anything, it's just annoying for that period of time. It may be something to do with the fact i've only had 2 surgeries, my hip osteotomy and then my amputation. You have had loads od surgeries, that must have a connection with pain. The only other thing that effects me, if i lie on my left side , nothing has ever been done there, my left knee quickly aches quite badly, transfered pain.
Dave Bailey :-)