Have you ever fantasized about something? What was going to happen, how you were going to feel and the conversations that you were going to have as you relayed the sequence of events to others! I did, I had a vivid image (and conversations ) in my mind about a successful Manipulation Under Anesthesia (MUA), the pure joy that I would have felt and the amazing story that would be told about my miracle and a decisive moment in the trauma that is Guillain-Barré Syndrome (GBS)…but that image blurred and vanished; I did not get my miracle.
Surprisingly, I did not have an emotional melt down – it did not occur to me at the time that no emotional reaction is just as bad as an over-reaction – a story for another post! Instead, the logical part of me took over; I focused my attention on researching the treatments for Neurogenic Heterotopic Ossification (NHO), I made a list of questions and I scheduled an appointment with another orthopaedic surgeon to get a second perspective on my case.
By the middle of November I had undergone Peripheral Nerve Conduction (PNC) and Electromyogram (EMG) testing and consulted with my neurologist, 2 orthopaedic surgeons and my physical therapists.
The PNC and EMG testing was a 3 hour long ordeal involving electrocution – ok! maybe electrocution is too harsh a word, let’s go with strong electric shocks – and more than 3 1/2 inches of a 4 inch needle electrode being stuck into the muscles in my legs. The tests assessed the speed of conduction of the electrical pulses through my nerves and the associated muscle function. The results revealed severe and continuing abnormalities of peripheral nerve function in my legs, it also indicated that there was deterioration in the nerve function when compared to the testing completed in February when I was on MICU.
The consults were just as daunting, we discussed the treatment options of surgical resection of the excess bone and bilateral hip replacement surgery; post-surgical radiotherapy and intense physical therapy would be required with either surgery. Both options presented with the risk of excessive intra-operative bleeding, fracture and recurrence of the NHO. With surgical resection the timing of the surgery is critically important; if it is undertaken before the bone is matured the risk of recurrence is significantly higher, on the flip side waiting too long could result in irreversible damage to the hip-joint. With hip replacement, standard implants may not be adequate and 3D printing technology would be required, also there exists the possibility that follow-up procedures would be needed in 15-20 years. I was told of instances where NHO was treated successfully and instances where motor function deficits were too severe for successful treatment. Amidst all the possible options and discussions the underlying advice was the same; I needed a specialist and surgical intervention which were not available locally.
I had completed the MUA with a prayer on my lips and hope in my heart – I now had to consider travel and treatment options involving major invasive surgery while my ability to ever walk again hung in the balance.
300 days with GBS & NHO…making the best decision was the only option!
*** making a decision takes a moment; living a decision takes a lifetime ***
