Massive Retrocerebellar Arachnoid Cyst

Posted by aemilyweaver @aemilyweaver, Jun 18 1:16pm

Hello, recent imaging has shown that I have a massive (4.6 x 9.8 x 6.7 cm) retrocerebellar arachnoid cyst, most likely congenital, completely surrounding the left half of my cerebellum. Imaging shows the left half of my cerebellum is about half the size of the right. According to doctors it does not appear to be causing any compression, and my brain has simply grown alongside the cyst. Differing opinions on whether it is affecting my brainstem. I'm 29 years old, and have struggled with many health issues throughout my life, none of which have an obvious cause. I grew up with insomnia, fatigue, brain fog, and severe GERD (which it seems I grew out of for the most part for some reason). Things have worsened as I've aged, fatigue and brain fog started to become debilitating in my teens. In my early 20's I was finally diagnosed with ME/CFS, dysautonomia, and small fiber neuropathy. Last fall I started to have severe chronic pain, numbness, weakness, and stiffness, and was diagnosed with fibromyalgia in December. The numbness and weakness, particularly in my left shoulder/arm, led to MRI's which revealed the arachnoid cyst. However doctors are saying the cyst is probably asymptomatic.
You may notice that all of the illnesses I've been diagnosed with do not have known definitive causes, and the diagnostic criteria for most of them are entirely based on symptoms and a process of elimination.
Has anyone had similar symptoms (debilitating fatigue, autonomic dysfunction, brain fog, chronic pain/numbness) with an arachnoid cyst in the same location as mine and no other known cause, and been told that it was not the cause? Or have you been told that it could be the cause? Have you had the cyst drained and did symptoms improve? Does anyone know if these symptoms can be caused by the disruption of the flow of CSF, and not necessarily by the pressure of the cyst itself?
I do have other symptoms as well that could definitely be caused by the cyst, such as tinnitus, constantly plugged ears like I'm on an airplane, poor vision in only my left eye, and clumsiness and poor coordination and motor skills, but none of these are debilitating or particularly concerning to me.
Thanks!

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I'm Jim and I had one removed June of 09 with almost the same dimensions but squeezed itself slowly becoming the size of more than 2 golf balls when they said it had to be removed. 9 hours to remove it at UCI Med center. I was 24 when it was found, 38 when removed, and scan showed it was mm in size. Do you have solid evidence that it is congenital. I still have major questions regarding a consistent query of neuros and others if my situation was in the family.... my response is the frustration of being adopted. I hope my dithering helps a little and there is definitely a specialist out there that will help with the symptoms that I am certain your brain/mind can overcome.

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