Massive Retrocerebellar Arachnoid Cyst

Posted by aemilyweaver @aemilyweaver, Jun 18, 2024

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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Did you end up having the surgery?

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I have a hard time understanding why a cyst of that size wouldn't be the cause of almost all the health issues that you have had! I had a ping-pong ball size tumor that just reared it's ugly head one nite, on the right side of my brain. The whole right side of my hear went numb as cement! I would, as I have said on this site before, seek out the top-notch medical facility and physician before I let anyone do or not do for my condition. ie John Hopkins, Cleveland Clinic, Mayo etc. Also do some research on the subject on your own through NIH and become informed of case studies. It will help you create a list for questions to ask as well. I regret to this day, letting the neurosurgeon operate on me without having done all I've mention but we didn't have all the wonderful resources that we do now 30 years ago.

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Did the doctors say if the large retrocerbellar cyst was due to a mega cisterna magna, an anatomic variant usually diagnosed in utero during the 20-week ultrasound? (At least that's how it is found nowadays - I'm not sure if they were measuring the brain this way prior to 2014 when my son was born, could've been something new).

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