1. < Brain & Nervous System

Does anyone else have experience with a symptomatic arachnoid cyst?

Posted by alexandrapurkis @alexandrapurkis, May 27 10:55am

I developed symptoms around the area of my arachnoid cyst (pain and pressure, sometimes to the point of throwing up) when I was 21. Now I am 70, and the symptoms have become almost debilitating. I've never been able to get the medical establishment to take the cyst seriously because arachnoid cysts are only rarely symptomatic. The neuro-surgeon simply denied that the cyst is causing the symptoms. But it seems too coincidental to me that the symptoms have always been at the exact spot of the cyst. So I wondering what other people's experiences are with this.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

angelicscripts | @angelicscripts | May 28 5:35am

Had bells palsy twice sent for MRI by ENT this is where they discovered a sub Arachnoid Cyst...saw private neurosurgeon who was a Professor he said he wouldn't touch me due to location & depth so sent me on my way ...like yourself I knew exactly where it was prior to been told what it was...headaches pulsating vision issues pressure where Cyst is ...if it bursts I've an hr to get hospital I've had Cyst on ovary that burst plus 1 inside finger bone that had to be scrapped out ..they are not sure whether I was born with it or it occurred after a bad accident ... I'm aware it's there & just get on with stuff ...UK I reside, there is a website Arachnoid Cyst plus Facebook have a group for people .

REPLY
1 reply
alexandrapurkis | @alexandrapurkis | May 28 10:39am
In reply to @angelicscripts "Had bells palsy twice sent for MRI by ENT this is where they discovered a sub..." + (show)
@angelicscripts

Had bells palsy twice sent for MRI by ENT this is where they discovered a sub Arachnoid Cyst...saw private neurosurgeon who was a Professor he said he wouldn't touch me due to location & depth so sent me on my way ...like yourself I knew exactly where it was prior to been told what it was...headaches pulsating vision issues pressure where Cyst is ...if it bursts I've an hr to get hospital I've had Cyst on ovary that burst plus 1 inside finger bone that had to be scrapped out ..they are not sure whether I was born with it or it occurred after a bad accident ... I'm aware it's there & just get on with stuff ...UK I reside, there is a website Arachnoid Cyst plus Facebook have a group for people .

Jump to this post

Thank you so much! The contacts are such valuable information for me. Now I don't feel so totally alone in dealing with this.

REPLY
dmk | @dmk | May 29 8:02am

I would send your tests to a renowned pediatric neurosurgeon even though your an adult learned that because people with Chiari syringomyelia go to peds neurosurgeon they have expertise

REPLY
1 reply
alexandrapurkis | @alexandrapurkis | May 29 8:14am
In reply to @dmk "I would send your tests to a renowned pediatric neurosurgeon even though your an adult learned..." + (show)
@dmk

I would send your tests to a renowned pediatric neurosurgeon even though your an adult learned that because people with Chiari syringomyelia go to peds neurosurgeon they have expertise

Jump to this post

Thank you so much for the tip!

REPLY
tink4iggy | @tink4iggy | Jun 11 9:46am

YES!! and thank you for posting. 1995 at 24 yo, Dropped on a golf course due to Gran mal seizure, woke up in ambulance with unending questions through today because it feels like it was yesterday. USC med center where I spent 3 days being evaluated, after this episode, finding a tiny epidermoid cyst, MM's in size, and told these are very common and most likely is the reason for this change I'm now feeling. Take this Dilantin and go... I've told this story in other forums that I consider now to have been, "the wrong place" but as I read here... it resonates correctly. That benign tiny thing in 95 grew very slowly to the size of 2 golf balls, putting too much pressure in the right frontal temporal lobe, squeezing up to the frontal lobe and twisting the brain stem. 9 hour Awake craniotomy to remove as much as possible June 2nd 2009 has lead to extensive encephalomalacia and with latest mri 3/18/24, another "growth"... and damage to the Basal Ganglia. The unending questions are definitely based on extreme curiosity and have lead me to posting this dithering and "hoping" to stand under more people and help to push or pull those up who may be struggling. As I have come to feel my auditory & visual senses are troubled, I have isolated myself by surrounding myself with perpetual fear. I do see the majority of issues with ridiculous irony now. Sorry to make this about me again and hope everyone finds relief from the worrisome difficulties I perceive so many are going through. Thank you again for opening this dialog

REPLY
1 reply
alexandrapurkis | @alexandrapurkis | Jun 13 8:42pm
In reply to @tink4iggy "YES!! and thank you for posting. 1995 at 24 yo, Dropped on a golf course due..." + (show)
@tink4iggy

YES!! and thank you for posting. 1995 at 24 yo, Dropped on a golf course due to Gran mal seizure, woke up in ambulance with unending questions through today because it feels like it was yesterday. USC med center where I spent 3 days being evaluated, after this episode, finding a tiny epidermoid cyst, MM's in size, and told these are very common and most likely is the reason for this change I'm now feeling. Take this Dilantin and go... I've told this story in other forums that I consider now to have been, "the wrong place" but as I read here... it resonates correctly. That benign tiny thing in 95 grew very slowly to the size of 2 golf balls, putting too much pressure in the right frontal temporal lobe, squeezing up to the frontal lobe and twisting the brain stem. 9 hour Awake craniotomy to remove as much as possible June 2nd 2009 has lead to extensive encephalomalacia and with latest mri 3/18/24, another "growth"... and damage to the Basal Ganglia. The unending questions are definitely based on extreme curiosity and have lead me to posting this dithering and "hoping" to stand under more people and help to push or pull those up who may be struggling. As I have come to feel my auditory & visual senses are troubled, I have isolated myself by surrounding myself with perpetual fear. I do see the majority of issues with ridiculous irony now. Sorry to make this about me again and hope everyone finds relief from the worrisome difficulties I perceive so many are going through. Thank you again for opening this dialog

Jump to this post

Thanks so much for your reply! Your experience with pressure on your brain must have been indeed harrowing.

REPLY
Please sign in or register to post a reply.