Life with Legg Perthes
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Hi, here is an interesting true story:
Ouch. It's no fun to have Leg Perthes, but after wearing a brace on my right leg for 3 years (grades 3-5) I am living a normal happy life.
Here's my story . . . My strongest memory at the onset was walking upthe sidewalk across the street from my childhood home in south Minneapolis, MN. when my right hip gave out and I fell over. "Huh? Whats this all about?"
I thought. I must have had pain before this, but I don't remember - kids don't have time to feel stuff like that. My Norwegian grandmother was a widow of a minister and well connected with doctors, missionaries, professors,etc. She insisted I go see a specialist right away and tracked down Dr. Millet & Schauffhausen in downtown Mpls at the Medical Arts Bldg. This was 1958 and probably the medical dark ages in many parts of the country, but the Twin Cities has always been a mecca forprogressive
Medicine & research. For this blessing I'm very grateful.
Early diagnosis was a good headstart for me. "You've got Leg Perthes,son - Aseptic-necrosis"
I spent many sessions under a giant X-Ray machine that must have spewed radiation all over, but who knew? I was grateful and honored to be included in the reviewal and discussion of my case. Dr. Schauffhausen was especially kind, informative, encouraging and STRICT! He let me know in no uncertain terms what I had to do to make this healing process work - STAY OFF OF THAT LEG! After showing my parents & myself the Xrays, I could see the flat area where the bone had "died" and needed to grow back. He made me understand I couldn't walk on my right leg (without a race) and not kill the "baby" bone tissue trying to grow back on the top of my femur. He warned me that if I broke the rules, I might have to wear a lower body cast with a metal rod spread-eagling my legs apart for an even longer time. I think he even showed me pictures of other kids wearing casts.So not me,I got the picture. I would be a good boy and follow the doctors rules.
I went to a special shop that fashioned othopedic braces. I remember walking in and seeing all sorts of odd and bizarre apparatus used to correct us "cripples" - a name seldom used in the profession, but one that I got a heavy dose of later. After measuring me, I returned a week later to pick up my new leg prison for the next 3 years - a non-weight-bearing brace with an accompanying raised left shoe. I remember the litany of strapping that brace on every day for over 1,000 days...there were laces and buckles and straps to secure the leg into this contraption - 2 flat steel support rods joined at the top & bottom with assorted leather and canvas restraints. The top of the brace had a cushioned leather rim that the hip rested on and would always invariably dig in somewhere around the groin area.I can still smell that leather. The thigh laces, calf & shin guards, and heel buckle all kept the out-of-action leg secure in the brace. The right leg was then suspended in space with the foot dangling in the air over a rubber-cushioned square peg-leg bottom. Now the confused femur had time & space to regenerate.
To compensate for the 4 inch lift in the right leg, the left foot wore a huge shoe with a four inch rubber sole. Very ugly, a brown orthopedic shoe that weighed an extra 5 pounds, but as I found out later, wonderful for kicking a football across the playground! And a feared weapon should some wiseacre raise my ire! I had to wear oversized pants so they would fit over the brace, held up by a tightly cinched belt. I looked pretty goony and was embarrassed to the max. You cannot believe how self-concious and painful it is for a kid to be stared and gawked at, to hear whispers and snickering, and feel the talk behind your back. I couldn't tell you which hurt more - kids who let you have it with both barrels or adults who shrink back from the cripple, the geek, the freak, the wierdo, the sick kid.
My eyes are tearing up now as I type this. I need to write this for myself as much as for you. I think the pain & grief I took from the social banishment was more intense than the daily discomfort of the brace.
I attended a small Lutheran school from Grades 1 thru 9 . We only had approx. 100 kids in all nine grades (3 grades in each of 3 rooms) and so was somewhat insulated from a greater stigma had I gone to public school.
You can be sure the teachers all coached the other kids on manners & sensitivity towards these "unfortunate crippled" kids like me. So after the initial months, everyone just got used to Brucie with the brace. I would run outside at recess and play softball with my classmates. I kind of had a strange hopping galump when I ran... but run I did. I was big for my age and could bat well. I was smart for my age and did well inmy studies.I had a lot of time for studies,as my venturing out into the physical world was somewhat stymied. But I did ride a bike - with my ever-strengthening left leg. This left leg had to take all the stress, action, and built up some tremendous muscle. I would ride my bike by hooking the top of my foot under the left pedal and pulling up to replace the right foot stroke. It looked funny, but I was sailing down the sidewalks and alleys with a sense of freedom and speed I couldn't get from my legs.
At home in the evenings before bed I would take the brace off and bend my leg for the first time in 12-14 hours. The pleasure was ecstatic! I'll never forget the joy and sighs of relief at being free again. This was the real me back again, not some odd freak making his way thru a difficult world. I was at home with my family - my wonderful family. My father was a housemover, my mother a music teacher. I will be etermally grateful for their love, support, & understanding.
Each night and before I would dress in the mornings,free from thebrace, I would have to hop. I hopped continually. I hopped everywhere on my left leg. I would not put pressure on the right. I hopped up and down stairs, chased my 2 sisters and brother in my kangeroo style, and hopped from the car across the beach into Lake Calhoun every summer for the only chance I would allow myself to stand on two legs - in the water. If I went in the water above my waist the bouyancy allowed me to stand normally. What a simple thrill! To stand on two legs like a normal kid. ( Anyhow,later in junior high school,after the whole Leg Perthes deal was over, I paid a price for all that hopping. My left knee developed Osgood Schlatter disease. I'll pass on describing this for now, but let's just say it wasn't so bad. It did keep me out of sports and thus led me to the arts - music, theater, speech, photography. Well, to this day, because of the balance I developed, I can still elevate my right leg and stand one one foot rock steady. I also have a right leg that's a little thinner and somewhat less hearty, but fine in all respects.)
On several occasions the steel supports would break from the stress I pounded on that brace and I can remember the broken jagged edge gouging into the side of my upper ankle. I would have to go back to the orthopedic fix-it shop and have the beast welded back together. No loaners at this shop. After several breaks and observing my growth, they'd build a new longer model. Oh boy, just about as exciting as getting another parking ticket...
After 3 years, which seemed like an eternity, I went in for my regular X-ray and couldn't believe what I heard. "You're done. Your leg has healed. You can take off the brace.." I don't think I heard the rest of his instructions about taking it easy,etc. - I was floating in seventh heaven. For the first time after hopping down from that cold slab of an Xray table I didn't have to strap the brace back on - my mother would carry it out to the car. I think she brought along a regular pair of pants and I got dressed like a normal 11 year old. You know, you just put your legs in, buckle and zip and you're done! What a thrill! I walked out of that doctors office, out through the sterile tiled hallway, rode the elevator and walked outside in the fresh air like a convict just sprung from the big house. Then the biggest and happiest memory of my entire life to date - she dropped me off at school, I climbed the stairs to my 5th grade class, walked in around the corner of the cloakroom to the astonished gasps of my classmates " Look at Bruce - he's walking... "
He's back...whatever...I didn't hear them too well...I was dreaming. I was back to the land of the living and people still liked me.
Absolutely etched in my mind till the day I die. You can imagine the feeling...you might have seen something like it in the movie Forest Gump when he cast off the brace while running from those bullys and then just blasted off.
Same feeling, only put yourself in those shoes & magnify it 1000%. I was reborn that day.
Now, in retrospective, I think of the gifts I've gained & earned through this trial. I've developed a sensitivity towards others thats invaluable. I've gained a sense of humor and patience. I've learned to choose my words carefully so as to not unintentionally offend, and I'm always grateful for the ability to walk & dress normally.