Sam's Successful Treatment

[Steve]

Our son Sam was diagnosed on the 5th March 2001 and his AVM was embolised the next day. The doctors initially said there was nothing they could do but a neuroradiologist, Dr Roger Davies, stepped in with what was then an experimental procedure and had only been tried once here in Adelaide on an AVM in the chest. After having 2 angiograms, a CT scan and an MRI the procedure was performed through Sam’s groin. 2 coils and a gel were used to block off the artery feeding into a mass of small veins and a large one which had compressed his spinal cord flat like a pinched straw.
2 days later he was walking, saying he simply forgot not to walk. He was 7 yrs old at the time. Now at the age of 14 he has a weaker left leg, foot drop and leg length discrepancy of ~1cm. His right leg has a degree of numbness.
He has always had these characteristics and was initially diagnosed as having a rare mono-plegia cerebral palsy. He was treated with physio and wore various ankle foot orthotics as he grew. He now wears a carbon fibre brace (looks like a sports brace) with moulded foot orthotic which is replaced as he grows. He also has regular massage therapy, swims twice a week + recently started rowing. All these activities are important for muscle building, co-ordination + strength.
At the end of 2000 Sam had increasing weakness in both legs and over the Christmas/New Year period increasingly became worse. Very scary as all his doctors + physio were on breaks. Sam returned to school needing to support himself on furniture to move around, eventually crawling and by the end of Feb 2001 in a wheel chair with no use of his legs. We had to patiently wait until his paediatrician appointment on 26th Feb. Still no diagnoses until Sam was able to see his neurologist on 5th March 2001. After a MRI he was rushed to the Womens’ + Childrens’ Hospital where we were turned away by the head of neurology. We were told there was nothing they could do. The Crippled Childrens Assoc (now Novita) stepped in behind the scenes + later that night he was formally diagnosed.
Every experience is different as is every out come so I am grateful to Steve for this site + the opportunity to read other stories as there was nothing available when Sam was treated.
Thanks
Laurie +Heidi Graham