Yohan had his second 7-hour surgery ( a redo of his left foot) on Wednesday, March 29 at Cedars-Sinai, in LA with Dr. Glenn Pfeffer. As you may have guessed, his first surgery was not successful. We will probably never really know why, but apparently, some of Yohan’s muscles in his lower leg were unusually strong, which made for a very successful tendon transfer (a strong tendon replaces the weak tendon to correct foot drop.)
Yohan is now able to lower (plantarflex) and raise his foot (dorsiflex) his foot (that’s the good news). The bad news is that something went awry. The end result was an extremely pronated and flat foot, a misaligned heel and a big toe that was completely crooked.
Bottom line – he was not able to walk on that foot. He’s been using a knee scooter and crutches for the past 10 months. HE’S BEEN COMPLETELY OFF HIS LEFT FOOT SINCE THE 3rd Annual CYCLE 4 CMT IN AUGUST OF 2016!!
Dr. Pfeffer looked far and wide for answers, and more importantly, a solution. Several ideas were floated around and the option we like the least was to fuse the subtalar joint or the joint directly below the ankle (due to the possibility of it being hypermobile). He wasn’t thrilled about this option as you lose lateral movement and fusion is usually last resort procedure.
After much discussion, this is what ended up happening:
Pfeffer straightened Yohan’s big twisted toe with a fusion. He no longer can bend his big toe, but he has no toe movement anyway, and it was just getting in the way. Now it will stay put. He took his big toe tendon, which he no longer needs, and put it on the inside of the foot, creating a normal arch.
He also unscrewed the screws from the first heel osteotomy, filling the holes with cadaver bone, realigned the heel and reinserted the screws to hold the new position. The three other toes were lengthened by cutting the tendons and shaving off toe bone to straighten them.
He also lengthened the Achilles tendon, which has always been very tight (this is why he walked on his toes when he was little). With such a contracted, stiff foot, surgery is always that much harder Also, he had an overabundance of scar tissue, which very difficult to work with.
I keep obsessing over the cadaver bone part. Like, whose bone did he receive anyway and what was that person’s story? Was her name Eloise or Gertrude? Was his name Emilio or Tom? Was the person young or old? Where did the bone come from a hip, arm, knee or foot? Did that person have osteoporosis or bones of steel? I guess we’ll never know the answers to the questions which haunt me. I just want to thank that person, whoever you are for your bone donation. Your selflessness may help my son walk once more.
Dr. Pfeffer believes that this second surgery has a 95% success rate, but really, we will not know for months, when walking and rehab begins.
We are all so glad it is over.
After surgery, Gilles and Yo drove back from LA the same night and did not arrive until 4am. Since he has such problems with pain the last go round, we decided to medicate him well before the nerve block wore off. That seemed to have worked, as he has not complained of much pain to speak of. A Relief.
Yohan is pretty out of it at times, but we are already starting to bring down his level of pain medication. Gilles and I are taking turns medicating him every three hours, especially at night. Yo returns to Cedars in 2 weeks to get the soft cast off and the fiberglass cast on.
We are very hopeful that once the foot heals, he will be able to walk and get around.
Yohan has been accepted to 2 graduate schools in the fall, both in LA, so he is excited about the possibilities that await him in the future. As much as he loves us, and we love him, regaining an autonomous life is the ultimate goal.
Please keep him in your thoughts and prayers. And, thank you for your love, support, and kindness. It means the world to us.