A tethered spinal cord is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord.
Without this operation the likely outcome is that Greg will become paraplegic.
Shortly before Greg was born we were advised that he had Spina Bifida ( Myelomeningocele), this is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord.
When he was 7 days old he had his first operation to close the hole as well as the first release of his tethered spinal cord. At 10 weeks Greg needed brain surgery to insert a Shunt to release the build up of cerebrospinal fluid (CSF) (Hydrocephalus).
When Greg finally came home and his surgery healed, aside from regular checkups, we settled into a normal family life with a newborn.
At the age of 3.5yrs, Greg was showing signs of a problem with bowels and bladder.
On his 5th birthday he headed back to hospital for his third operation but second operation to again release his Tethered cord that has caused total Incontinence.
Fortunately things settled after this, Greg tried to live life as normally as possible. Of course there were limitations on what activities and sports Greg could do. He would have liked to play just one game of Rugby with his brother but the risks were just too high.
One sport he was able to play was cricket and it was during a game in 2016 that signs of something wrong first surfaced. Greg hadn't played for some years and was filling in. He was about to bowl his first ball and as he approached the pitch he fell over. He got up amid the laughs and jeers and tried again. Same result. This time so embarrassed he wouldn't bowl again. He found that he was tripping over as his foot as it dropped down with every step.
What we came to learn was that as Greg was now dealing with Footdrop.
(This is a gait abnormality in which the dropping of the forefoot happens due to weakness or damage to the common fibular nerve including the sciatic nerve, or paralysis of the muscles in the anterior portion of the lower leg. It is usually a symptom of a greater problem, not a disease in itself. Foot drop is characterised by the inability to raise the toes or raise the foot from the ankle. Foot drop can be caused by nerve damage alone or by muscle or spinal cord trauma)
As the condition became more pronounced Greg has to lift his legs higher and swing his foot through so it lands flat. Having to walk this way has now given him aching hips and has lost muscle tone in the lower legs.
The first doctor sent Greg for neurological tests which came as no problem in this area. He was referred on to a physio. Things didn't change. Greg now wears splints on both feet to assist him in walking.
Next we found a specialist who, via many MRI's, confirmed that again the cord has tethered. Another operation, (Lipomyelomeningocele) is required. But was advised that it would not fix his condition just stop it from getting worse. If this operation does not happen Greg will end up as a Paraplegic.
Preparation for the operation were underway when Greg's health fund advised he was not covered.
We found another specialist who operates in the public system. Have since found out that the Government has stopped him accepting public patients.
Greg's condition is worsening rapidly and he needs this operation quickly.
We will be eternally grateful for whatever assistance you can provide.
Michelle, Alex and John Pinson
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