Question about syringomyelia life expectancy.
I was diagnosed with cerebellar tonsillar ectopia. My neurologist has looked at my scan and stated that she thinks my risk of syringomyelia is slightly higher than that of the general population. However, I’ve had a number of symptoms that I believe at the very least indicative of a solid Chiari diagnosis, if not a syrinx. Despite having a scan show my Dx, my neurologist for some reason has not ordered an MRI.
So I’m assuming the worst, because getting a solid answer is apparently not an option at the moment.
Im confused by the conflicting information I’ve been reading about life expectancy. I see that Chiari has always generally been considered to have favorable outcome and normal life expectancy, but that at least 50% of Chiari patients will develop syringomyelia. Most things I read indicate that life expectancy for someone with this disease is mid-50s to early 60s. This confuses me, because if the majority of people with Chiari get syringomyelia, I don’t see how they can expect a normal life span. So, I have a couple questions:
Is ‚life expectancy‘ assuming the syringomyelia is untreated? As in, if they treat the Chiari and it has an effect on the syrinx ( as it usually does), does the life expectancy go back to normal? Or is it assuming someone with the condition will have that life expectancy regardless of if they are treated?
Is the ‚life expectancy‘ I’m reading accurate today? Most of what I read dates back at least 8 years. Do people today have a better outlook, or are they still in the dark about this disease?