Ella was 3 almost 4 when diagnosed and had FMD surgery (without titanium mesh or any cranioplasty) and she developed scar tissue which I found out 6 months after surgery. I'm not sure in the UK but here in the usa there are some neurosurgeons so I hear of more with surgery here. Later on rileys symptoms reminded me a lot of Ella.
I opted for surgery due to her age and she was progressing fast even with medication. Her second MRI showed some progression also. I will tell you after her second MRI, her neurologist did not give a good prognosis. Maybe 3 months who knows. I was then faced with the option for a second surgery. This would have been extremely complicated and so I waited. I had to put ella to sleep may 2 but it was not due to SM, even though it was part of my decision.
So the 3 months were more like 8 and who knows it could have been years. She had changed to lyrica and like riley was also on prednisone. She did not lose ability of her hind legs but she was declining and some days would not move and I often carried her. That might be why I say what I do about the MRI because I saw that medication did help but I'm not sure without surgery I would have those months.
Riley gave me hope. Another member of the forum had an mri that dr. Shores said was one of the worst he's seen. Down complete spine multiple syrix (plural) but when they played before his surgery, he would run after a ball and ella wouldn't move. Corey scratched and ella didn't as much. So on the outside I don't know who was worse but his image might have been.
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