Hi everyone,
I promised to update my journal here as I continue to seek a solution to mend myself.
After requesting for an NHS doctor since April, I finally got an appointment to see a lengthening doc at Kings College Hospital last Friday, July 21st. The moment I arrived at the Orthopedics dept, I noticed several people carrying Exogen cases. I found out NHS had approved them and had been trying them on patients with new fractures.
After about 5 mins with my doc who had glimpsed through my file and couldn't make heads nor tails about my medical history whether it was a fall while rock climbing or cosmetic leg lengthening, I confessed that I had lied to the A&E previously about falling to ensure that I got treatment as I was fearful that I would be turned away if it were cosmetic and private. After I finished, I was crying and she was crying too. She got up and gave me a long hug. She said this is the first time she has cried in front of a patient.
She asked me to request for all my medical records to be transferred to her. She has an ongoing similar case from Guichet as well and is familiar with his nail. She said she'll accept my case and will try to confer with the RNOH (national orthopedic hospital) about how best to treat me.
She also addressed something else, she said my spine was curved about 40% (causing me to hunch over) and had a severe left leg genu valgum (knock knees) from my recent lengthening. She started setting up a physical therapist, a chiropractor, a bunch of blood work, MRI scans, xrays and requested to see me right after these tests same day.
After 3 hours, I saw her again during her lunch hour as she was very busy and she spent another 45 minutes with me. She said it was key that I see an NHS therapist too because of all the trauma and anguish I've endured physically and emotionally.
I asked her about Exogen and she said it wouldn't hurt to try but she doubted it's efficacity. Regarding a bone chip/coral bone graft, she said they've successfully fused only up to 5cm, but never a 8-9cm gap as big as mine. She showed me how a bone healing should look like month by month and it was surprising to me that nobody noticed that I wasn't consolidating at all until months after my lengthening had ended.
Since I've been lengthening mostly on my own these last few months, she asked me to stop for now for fear of irreversible soft tissue damage. She measured my length disparity to be approx. 2cm apart. My right leg accidental clicking is called runaway lengthening, when a nail cannot be stopped or reversed. That's a difference btw the g-nail and Precice for example.
My left leg looks very good with nice callus formation while my right leg has receded to nothing again. We're currently awaiting more test results to see if there're asymptomatic pin site infections or cysts/growths that might contribute to the non-union.
I'm not a medical expert and I'm merely noting what's happened to me so far as I understand it as a layman. She kindly explained too that the £35 Uber return journey cost for me can be avoided with NHS free shuttles. So I'm speechlessly grateful.
I am touched that I am cared for. She has scheduled another appointment one week later to see the physio and to consult with her again after she's received my complete dossier. I never thought I'd say this but compared to paying £1,200 for blood tests before and all the screaming, guilt tripping and drama, I never knew a free and compassionate option existed out there.
She asked me to stop blaming myself for not doing enough to enable bone to grow on my right leg because bone is definitely growing on my left leg. I've never actually thought of it this way as this last 12 months have been plagued with self derision and guilt.
