I was only diagnosed 2yrs ago. I am due for my yearly MRI and check-in next week. My previous neurologist was not really that informative (he has left and I’ll be seeing someone new) and when looking at my paperwork from last year I see they marked down “treatment for Mega Cisterna Magna”. I didn’t previously notice it and nothing was ever said to me. Googled it but as with most thing Chiari related the results are all over the place with “it could be something” to “it could be nothing.” I feel my symptoms have been progressive over the last 4-5years. Any information anyone has with their own experience or info from their neurologist would be great.
I’m sorry to say but this is not unusual, some like to treat us like mushrooms ie Keep us in the dark and feed us up on bull… As one specialist told me ‘It’s a need to know issue and you don’t need to know…’ Some medicos have the idea that the less we know the less we stress, but for some of us this couldn’t be further from the truth of it all.
In very basic terms the cisterns are areas that hold cerebral spinal fluid (CSF) to be able to cushion the brain from impact. The CSF also assists in nourishing the brain and removing waste. The CSF surrounds the brain and the spinal cord and is absorbed by the body. We produce around 600ml of CSF daily. When the fluid is not absorbed or cannot exit the skull then we can have issues. For some these issues can be minimal, but for others OHHH BOY, they can be chronic bad. Some medicos are of the opinion the symptoms are ALWAYS minimal as Mega Cisterna Magna has it’s primary impact on the cerebellum which controls body movement. The thinking sometimes is that movement is not affected then it’s all minimal, but for some that is not the case at all.
"…but as with most thing Chiari related the results are all over the place with “it could be something” to “it could be nothing.”
I’m going to expand on this comment: It’s not just Chiari related, but anything brain related. We are all wired differently and small changes neurologically can have some MASSIVE impacts physically. What may have minimal impact for one person can have a HUGE impact on another. With in our skulls there MUST be a balance of 3 things. Brain matter, blood and CSF. If one of those is out of balance we can become progressively more and more symptomatic.
If you believe things are progressing, you need to say so. Some radiologists reports are often based on a comparison with your last scan. Some changes can be small in this comparison, but if this year’s scans are compared more long term ie your original scans those changes can be more easily seen. I say all of this because I have an issue with CSF and now have a shunt (a plastic drain tube) to maintain the appropriate pressure with in the skull. I’ve had no end of issues regarding neuro’s, CSF and symptoms.
Hope it helps
Merl from the Modsupport Team