Tracey’s clubfoot story

Club Foot Corrected with Ilizarov Frames – My Experience

I am 21 years old & finished the ilizarov technique for recurrent & resistant club foot in Dec. ‘08. I have/ had one club foot on my right side. At birth it was definitely a very rigid deformity. My club foot is secondary to a birth condition known as Arthrogryposis. Arthrogryposis is joint contractures in multiple joints at birth instead of just the feet. Almost 90% of babies born with Arthrogryposis also have rigid bilateral club foot. I went through casting (non-ponseti) & then a major post-medial release with modified talectomy. My surgeon at the time believed doing the “big surgery” first would save me from future surgeries. That thought alone shows he didn’t really understand my condition & club feet associated with it. Club feet along with my condition has a very, very high recurrence rate & I was no exception. By the age of 3 recurrence had begun & nothing was done, no casting, no surgery, no therapy. By the age of 7 my foot had recurred to the point where I was bearing all my weight on only my last 3 toes & small portion of my 5th metatarsal. I had 15-20 degrees equinus deformity, heel rotation & 40 degrees supination deformity. In addition to all of this all the bones in my mid & hind foot consolidated as one solid mass of bone. This is known as spontaneous triple arthrodesis. I wasn’t in pain & could walk so my parents opted to wait to deal with my foot until I could have a say so in what was done. By 18 I was pretty much done living with the deformities & the leg length discrepancy I developed.

After seeking the opinions of 3 pediatric orthopedic surgeons in my home state of Ohio & not liking what they had to say I sought the opinion of a specialist in NYC who specializes in my condition & club foot deformities. Most of the surgeons I had seen up to that point were recommending taking a wedge of bone out of my mid-foot & rotating it back to plantigrade. The reason the bone wedge would need to be removed was so that my skin would stretch over the new shape of my foot. This would have given me a very short foot, which was already smaller then my non clubbed foot. Along with this a lot of my tendons, muscles & ligaments would have to been lengthened acutely in the OR. Essentially an exact repeat of my first surgery 18 years earlier. The specialist in NYC (Hospital for Joint Diseases) recommended the ilizarov technique because my deformity was so rigid & severe. I researched it & decided that yes this made more sense. The fixator would not require him to acutely lengthen any soft tissues or remove any bone. I would be having the same osteotomies (bone cuts) as recommended by previous surgeries but the actual reduction of my deformities would take 5-6 weeks via fixator instead of a few hours in the OR. Yes this route would be a much, much longer recovery but it would give me a better result.

I had the surgery to apply the fixator in Aug. 2008 after my surgeon completed his move down to Shriners Hospitals for Children in Philadelphia. He applied a two-ring ilizarov w/ a foot plate & 5-struts. I had 16+ pin sites, 4 half-pins & 7 tension wires. A week after surgery I started doing the “distractions” which are the turning of the struts to start pulling & pushing my foot into the new position. I did between 4 to 6 turns each day on each strut. Each strut had a different job. Struts 2 & 3 pulled by foot out of equinus, struts 1 & 4 rotated it back into plantigrade from supination & strut 5 lengthened my foot as the mid-foot osteotmy rotated. I also had a heel osteotomy which was partialy reduced in the OR & then the fixator finished the job with turning a screw with a wrench instead of struts. It took 6 weeks to completely reduce the deformity & give me a deformity free foot. The fixator also lengthened my foot heel to toe an entire inch, making my feet the same size. I stayed in the fixator while my osteotomies healed which because I was done growing took 12 weeks. The foot plate came off in the OR while the two rings remained attached to my tibia for the lengthening I under went a few months later. They placed my foot in a molded cast shoe like thing & used an ace bandage attached to my frame to keep my ankle in dorsiflexion. I was then placed in an AFO a week later which I will wear until the frame is finished lengthening my leg because the AFO is maintaining my foot in neutral & supplying a lift so I can walk.

I was non weight baring during the actual reduction/ distraction stage but was allowed to bear weight as tolerated once that was completed. I learned to stand & balance in my foot frame, mainly bearing weight on my heel plate & half pin. I had some VERY unusual complications that were not related to the frame but rather the surgery to apply the frame. I also contracted an infection in an incision site 2 months after the surgery. 6 weeks was the fast route to reducing the deformity in my foot so my pain level was high but it was easily managed with percoset 4-6x a day & an extended release oxycotin 2x a day.

I also battled severe swelling which forced me to stay in bed a lot. Because I have deformities in all of my other limbs getting around on crutches was extremely difficult. The kids with only 1 limb affected by a deformity with a fixator attached were up on crutches in a day or two. I had physical therapy daily because I stayed inpatient the entire time I was doing turns. PT assisted in getting me mobile on crutches, transferring & maintaining the strength & flexibility in my leg that had the fixator attached. When a fixator is attached to a limb one risk is that muscles above & below the frame will become contracted not allowing the knee, ankle or hip joint to fully extend/ flex once the fixator is removed. This did not happen to me.

Another huge concern with external fixation is pin tract infections. My doctor has extensive experience in treating deformities with ilizarov frames so his protocol is keeping his patients on prophylactic antibiotics the entire time the frame is on. I took 500 mg of Keflux 2x a day & if it looked like a pin was heading towards infection I took it 4x a day for a few days. I’ve had the frame on a year & have not had 1 true pin tract infection. Yes they’ve been irritated & needed some tender loving care for a few days but no actual infections around the pins. My doctor does NOT believe in what some consider “traditional” pin care. Every doctor has their own protocol for pin care. Some treat the pin sites as open wounds & keep them dressed with bandages, some require cleaning the pin sites with diluted peroxide 2-4x a day & some say just bath/ shower daily & clean around them well. My doctors protocol is showering daily & washing them with antibacterial soap. Due to my Arthrogryposis I cannot actually reach my fixator so I have to have somebody else do pin care. Since I like to shower alone I get the pins wet & then have somebody scrub around them with baby wipes & antibacterial soap. I have someone do this daily. In the hospital the nurses did traditional pin care with long q-tips & peroxide which is by far more painful then my solution of baby wipes. The first 4 weeks with my pin sites were rough, they hurt bad because all they wanted to do was drain. I washed my leg down with a shower head twice a day for a week & then they finally started to heal. Once the distractions were completed they really stopped hurting & draining. My leg pins healed completely (the skin healed tight against the pin) in a few weeks but I also had a few pin sites on my foot that drained until the fixator came off, this was mainly due to the swelling. As painful as they may look, pin sites do not hurt unless they are “gunky” & the skin around them can’t move. The only place where the skin could really move around my pins sites was right below my knee where the fixator began. Pin care can be painful but not extremely & hurts less if its done daily & the pins are kept very clean.

Once the frame was removed I was allowed to immediately start bearing weight & stretching my foot further into dorsiflexion. Once I got my AFO I was walking with crutches that day, with 1 crutch in a few days & completely unassisted in about 2.5- 3 weeks. Once the fixator was removed my foot was very, very sore because it had not moved in 5 months. I had therapy to work out this soreness, this took 3 weeks to get the really intense soreness to go away & another couple of weeks to stop hurting as I lifted that foot off the ground when my AFO was off. Once the fixator came off I could no longer flex my big toe down & I had extreme sensitivity issues along the medial border (inside) of my foot. This is due to the fact that in club foot the distance between the big toe & the heel is shorter then what it should be & as the foot is turned back into neutral & plantagrade this side of the foot & all the soft tissues have to stretch into the new position. Nerves, bone & muscles all stretch at different rates but the fixator has to reduce the deformity at the rate of bone healing so bones don’t heal while distrcations are still being done. Nerves stretch the slowest so my sensitivity to touch & lack of feeling on the medial border of my foot was a result of the nerves being stretched quickly. Nerves usually heal it just takes awhile. I am 11 months out from the distractions being done & my tolerance of being touched on that side of my foot has greatly improved but may never be normal again. I have also gained back all feeling to light touch on the inside of my foot. I have not gained back the ability to flex my big toe, I can bring it up but technically that tendon is still stretched with the limb lengthening. My surgeon hopes I gain back this movement but only time will tell. The tendon could be over stretched or tied down by scar tissue. I have the most important movement to walking, bring the big toe up. My pin sites have all healed really well & very quickly. The half pin in my heel did take some time to fill in but it did I do have a small indent in my heel. Due to the fact my foot was left clubbed soo long I also have a bone spur & huge callous on the bottom of my foot. This callous used to be on the side of my foot but then relocated to the bottom as my skin was stretched around the new position of the bone. The bone spur isn’t painful yet & the callous/ bump hasn’t effected my walking. The spur may become painful or the callous could build up some more & pad it. Only time will tell if I’ll need to have the spur removed.

Overall I’m very pleased that I went with fixation instead of just surgery. Sure the recovery was very, very hard, the distractions incredibly painful & overall time & financially taxing (due to 600 miles between home & Shriners) but the result is what I wanted a plantigrade foot that was not shortened & not painful once the frame was removed! I would recommend fixation for only the very, very severe & rigid deformities that have no other way to safely be reduced. Also be prepared for the extended recovery period. Application of the fixator is just the beginning of the treatment, the real work begins once the patient wakes up. The family is responsible for a ton of care that for other surgical procedures is not required. Distractions 4-6x a day, pin care 1-4x a day, medicine 2-10x a day & weekly to monthly follow up appointments. Don’t expect the foot to be “normal” even just idiopathic club foot corrected by ilizarov will have severe stiffness in certain directions afterwards. My foot goes into 4 degrees dorsiflexion, 8 degrees equinus & 0 degrees in supination & pronation. Overall ilizarov for club foot deformity is an awesome way to treat severe deformities that otherwise could not be safely reduced.

Please feel free to contact me with additional questions.

Pictures of my foot & frame before & after:

2 thoughts on “Tracey’s clubfoot story”

  1. Hi Tracey,
    Hope you are Well:) Thank you for sharing your story. I had Ilizarov frame at age 5(left foot) and 6 (right foot), today Im 29.

    Did you get pinhole-scars from the illizarov pins? You write about how you faught the infektions..

    I have two “holes” in my leg from the pins. Im in contact with the doctors about plastic surgery to change it. However, one Doc revommends to fill it with bodyfat (I prefer this idea) and the other doc recommends to cut it open and then sew it together..

    Have anyone experience with these approaches to remove/fill scars from
    Ilizarov frames??

    Louise (Denmark)

  2. Carter Roberts

    Hi Tracey, I thought your story was very compelling. I was wondering if you could provide the name of the surgeon that helped you and some pictures of your process.

    Thank You

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