I have heard that lightning does not strike in the same place twice, apparently that does not apply to me and Guillain-Barré Syndrome (GBS). When I visited with the Physical Medicine and Rehabilitation Specialist I was diagnosed with bilateral Neurogenic Heterotopic Ossification (NHO) of the hips with complete joint ankylosis.
NHO is a metabolic disorder characterized by the process of abnormal formation and growth of benign bone inside the soft tissue and muscle adjacent to large skeletal structures/joints where bone does not normally exist. Joint ankylosis is the stiffening and immobility of a joint due to fusion of the bones. NHO generally affects the hips but can also present in the knees, elbows and shoulders. It is primarily seen with spinal cord injury and to a lesser extent with severe neurologic disorders, musculoskeletal trauma, central nervous system injury, surgery or severe burns. Occurring in only 6% of all GBS sufferers, NHO is very rarely seen with peripheral nerve disorders.
Like GBS, with NHO there exist no discrimination in gender, age or race and the exact cause is unknown although it can be attributed to a lengthy stay on MICU, the prolonged use of a mechanical ventilator and the associated deficiency in oxygen reaching the tissue, immobility from complete paralysis and reduced movement of the joint resulting from in-sufficient passive range of motion exercises.
The management and treatment of NHO include primary and secondary radiation, non-steroidal anti-inflammatory drugs (NSAIDs), surgical excision and joint release and/or complete joint replacement.
My case was immediately referred to an orthopaedic surgeon who was brutally honest in the assessment of my x-rays and informed me that my NHO was significant and advanced. There were a myriad of possible complications, a negative correlation between the severity of my GBS and the likely results from any treatments undertaken and a high rate of recurrence.
It was decided that I would be placed on a 6 week course of NSAIDs to reduce my body’s inflammatory response, eliminate addition bone growth and mature the bone already present. Afterwards I was to undergo a Manipulation Under Anesthesia (MUA – is non-surgical manual therapy procedure performed under general anesthesia which uses a combination of passive stretches, myofascial manipulation and articular and postural kinesthetic moves to improve soft tissue movement, reduce discomfort and increase mobility).
Really, what is the probability of this? Worldwide, GBS is considered a rare illness affecting only 1-2 in every 100,000 people per year – I was already 1 in 100,000. In Barbados there were only 4 cases of GBS in 2016 – I was 1 of that 4 and now I had NHO, a condition that is an extremely rare complication to GBS.
Lightning had indeed struck twice in my life, I now had a two-headed monster to fight against all the odds…209 days with GBS became 210 days with GBS and NHO…
*** life has a way of testing a person’s will by having nothing happen at all or everything happen at once***
