jen's blog

Hip Replacement... CRAZY

jen — Wed, 18 Feb 2009 14:17:25 +0000

It's been a while since I've written anything.... busy with work, kids, and art.

2 interesting PPFD-related things have happened recently. I was asked to speak at a symposium at the Tampa Shrine that focused on how to care for pediatric limb deficient patients. My segment focused on the psychosocial aspects of care... basically, why 'bedside manners' and showing young patients personal interest is so important. I talked about how the personal connections I made with my Shrine medical staff really shaped me- and my family- even perhaps more than the excellent medical care I received. It was really great to sit, as an adult, in front of all these medical professionals and explain things from a patient's view. These things are, perhaps, common sense... that a physician or prosthetist showing a strong interest in the young patient's hobbies/recreational activities can have a profound influence on the patient's overall rehabilitative success. But I really DON'T think it's common sense because I've heard all too often that this EMOTIONAL support is lacking for some young patients. Anyway, this was a very cool experience. AND it was awesome to see those same people working at the Shrine- people I've known since I was a little girl.

Another interesting thing that has happened is that I've been having major pain in my 'good hip'. Funny, the leg with the most severe PFFD has a hip that doesn't really bother me- despite the fact that there is really no traditional hip joint, just the end of a bone with no ball, no socket- all just held together with tissue. The other hip, well, that's a different story. The side I wear a prosthesis on is my 'good side'. The fake leg is the good leg. So, anyway, I decided to have an x-ray because my last hip x-ray is from ages ago, when I was a teenager. So I did and it ends up that my left femur is slowly migrating upwards. It's rubbing against the top of my pelvic bone. Nice. So... the ortho Dr. suggested that maybe I could have a hip replacement. If you could see my x-rays you could imagine how crazy that sounds. That's basically my only option, which doesn't sound like much of an option to me. So, I requested a copy of my x-ray and left. No thanks. But at least I did get a new x-ray. I LOVE to see how in the world I'm put together. It blows my mind. And you know... as funky as my hips are, I can walk, not too gracefully, but I can. Those funky hips help up to two pregnancies and two deliveries. Thank you, funky hips. Despite the trouble you cause me, I guess you did your job.

Song on youtube

jen — Mon, 18 Aug 2008 17:03:55 +0000

My husband and I have a video on youtube. If you go to www.youtube.com and do a search for 'Joseph Merrick', we're on the first page. You'll see little hands on a piano. We play under the name 'o my machine'.

The song is inspired by and written for Joseph Merrick (sometimes called John Merrick), The Elephant Man. I saw that movie as a young child and, although my 'condition' is extremely mild compared to his, I really connected with him in that movie. I would watch that movie once in a while as a child and just cry and I think it really was a huge emotional outlet for me as a kid.

The Shriners

jen — Thu, 14 Aug 2008 16:54:28 +0000

I have to give many many many thanks to the Shriners... both in Greenvile and in Tampa, Florida (yes, you guys... Ron Gingras, Debbie, Danny, Fred... all of you). I grew up there and those people celebrated my every accomplishment. I remember when I was a little girl I brought my roller skates with me to the hospital and the staff stood outside while I skated around. In the hallways, everyone says hello. They really treated me like a was special there. It wasn't just that they made me legs... it was a whole experience. My prosthetist now is awesome- Jason Kahle, CPO- but those people at the Shrine are the ones that got me going. THANK YOU THANK YOU THANK YOU.

Pictures!

jen — Thu, 07 Aug 2008 17:27:06 +0000

Lots of pictures...

Here is the first prosthesis I used, before I had my 'little foot' amputated.

The ones of me sitting on the floor with the package are me opening my first 'bending leg'. After my amputation I wore a straight leg prosthesis (as in the picture when I'm sitting on the floor). Back in the day, they would just mail you your leg, isn't that funny? I remember they would make it a little taller than normal so that I'd grow into it. Whew!

Here is also a picture of my lovely family, one of me and my oldest daughter dancing.

Attachment	Size
first leg 1.jpg	65.35 KB
first leg 2.jpg	58.06 KB
first leg 3.jpg	68.81 KB
me.jpg	94.39 KB
OPENING THE BENDING LEG.jpg	135.85 KB
DANCING.jpg	125.91 KB
ON SWING.jpg	124.18 KB
MY FAMILY.jpg	131.34 KB
me and hayden dancing.jpg	103.87 KB

Infancy

jen — Wed, 06 Aug 2008 21:48:20 +0000

I was born in 1977. My father is a police officer and my mother is a famous doll maker. When my mother was pregnant, ultrasounds were not the norm, so my parents had no idea about my limb deficiency. My mother says she would tell the doctor something felt different throughout her pregnancy. "This one doesn't kick as much", she would tell him, comparing me to her two other normal pregnancies 10 and 8 years prior. When I was born, I was taken away without explanation and my parents were left to imagine the worst (anyone see 'It's Alive'?). My mother says the doctor mentioned that I was deformed and they did not see me until several hours later. When they did finally meet me, my mother says she thought I was beautiful. And what she noticed, more than anything, was the fact that I had her father's eyes. He was a fisherman and died before I was born.

I've heard many people on this forum talk about the 'wait and see' approach, which is mainly what my parents did for the first few months. They weren't sure of what I could or could not do, but the doctors were pretty sure I would never walk (I guess they would have thought the baton, baseball and cheerleading would have been impossible too... hahaha). I don't know my classification (perhaps I should find out), but my left femur is very short and my right is gone totally, with only a small tibia. There was a little foot on the right side, and the descriptions from my parents vary. From what I gather, it was sideways and had only a few toes on it. There are no pictures of this little foot, which makes me sort of sad. Not that I would sit around missing it and really be 'sad' at all about it being gone, but it was a part of me that I don't remember and there is no record of it. I have recently thought about requesting all photographs of me from the Shriners and maybe I can find a picture of the little foot there.

When I was a baby, my sister and brother (8 and 10 years older) would race home to change my diapers. I learned how to stand by pulling up on a chair. Early on, a practitioner made me a 'bucket' type socket with a hole out the right side for my sideways tibia/foot. The 'bucket' had a little wooden leg attached to it. The only function this thing had was to help me to stand.

It was a couple next door that first told my parents about the Shriners. The man there was a Shriner and told my parents there were people that could help us. I went to the Greenville Shrine and had corrective surgery on my right side when I was about 12 months old. I was walking with a prosthesis by around 18 months.

I understand why my parents decided FOR me.

jen — Thu, 06 Mar 2008 19:22:42 +0000

I'm 31 yrs old and my parents decided on amputation of my right leg (severe PFFD and severe tibia/fibula marlformation). There was really no other option on that side because of the severity. I wear an above knee prosthesis and function just fine (I have a 5 year old and a 4 month old). I have PFFD also on the left side, but only have a short femur, the lower part of my leg is pretty much OK. I did not have limb lengthening on that side (because there was really no necessity, since there was no other leg to match it). When I was younger, I had wished for limb lengthening on that side, only so that my arms woudn't seem so long. But, the physicians didn't want to compromise my hip and knee joint, which were functioning better than the thought they would. They thought the limb lengthening procedure on my 'good' leg would compromise it. Well, I'm 31 now, married, with kids. And I could really care less about my arms being a little long for my body. And being 31, I am starting to feel the result of a dislocated hip and a funky knee joint and I have a lot of hip pain now. I'm thinking this pain would be WORSE if I had had a major procedure like lengthening. So, long story short- since limb lengthening for me would have been mostly cosmetic, I'm glad I didn't have it on my left side. I hope this information helps. But understand, most of your children- whatever you decide- will grow up fine regardless. If you raise them as strong and confident people, there is little regret. Do I wish I had some pictures of my little foot before it was amputated? Sure, maybe. Do somedays I long for the long leg instead of my short one? I rarely think about it. And you know what? I'm a parent now. And I understand what it's like to make decisions for kids. And I think, regardless, my parents did an awesome job at facing the 'unknown'. And most of your kids will think the same.

Finding the right prosthetic facility/prosthetist for PFFD prosthesis

jen — Wed, 10 Oct 2007 19:26:20 +0000

I've found that not every prosthetist is capable of dealing with a PFFD residual limb. As we all know, there are many issues to address for us... unusual limb shape, alignment, joint issues, etc... I finally found a prosthetist that realized he had to align my prosthesis differently than standard above knee amputees. Getting your knee center even is particularly tricky! Custom silicone liner have also been a real help. So, for people who say that lengthening (even when it's not really recommended) would be better than wearing a prosthesis, I'd revisit prosthetic options and find a more qualified prosthetist. Prosthetic technology has advanced so quickly, and will continue to advance.