Arachnoid Cyst

Posted by Kellyo @kellyo, Jul 22, 2011

Hi there, I am living in Ontario, Canada (although my profile lists an american state. There was no option for me to select a canadian province) and I am a 39 yr old woman. I have been diagnosed with an arachnoid cyst of the right posterior fossa which measures 2.1x1.6x1.6 cm.

The diagnosis came from an MRI after I started experiencing tingling and numbing sensations in my hands and feet. Well, later to follow was extreme fatigue, extreme burning pain in the base of my head and neck, behind my left ear, dizziness, light headedness, feeling like air is trapped inside my head, ears popping and buzzing, mood swings and i have had two episodes where I have almost fainted holding my baby.

I have seen one neurologist here in Ontario who tried to tell me i was pre-menopausal or depressed, neither of which is true. It seems like the medical profession here in canada do not recognize these tyes of cysts as being symptomatic, yet i have found thousands of people all over the world with the same cysts causing the same symptoms. It is so frustrating being told that my symptoms are "not likely" caused by this cyst, yet there has been no other medical reason found. The symptoms have progressivly gotten worse since I had my son, who is 20 mths old now. I am no longer working becuase the headaches and fatigue have become dibilitating. I want my life back!! I sleep endlessly during the day and night and feel as though my body just doesn't have enough energy to work for me. I am losing out on precious moments with my children and no one will help me.

If anyone out there has experienced teh same thing or help me in any way please contact me. i desperately need help.

I understand from my enormous research that I have done that these cysts are often triggered to be symptomatic after a c-section child birth (which is when this all happened for me) because of the epidural or spinal that has tapped into my spine because the cyst is near the top of my spinal cord and cerebellum. I also understand that neurosurgeons in other parts of the world are doing great things with these cysts.

thanks in advance to anyone that can help me.

Interested in more discussions like this? Go to the Spine Health Support Group.

@4846 In my case I’m not sure I did got ill in October 2021 with something that seemed upper respiratory infection but swab was negative my pcp at the time gave me prednisone and everything got better. But after everything went down the hill (on my discussion about diagnosis). So far I have been diagnosed HSD connective tissue disorders and POTS Dysautonomia. But I got a COVID blood test 4 months ago to see and my antibodies are super high and my last dose was 2 years ago so I suspect I got infected that October 2021. But locally has been a challenge to get help or answers. Regardless, I’m hopeful that my team at Jacksonville will help me 🥲

Is that or something else I rather not to be. 🙏🏻 blessings for healing 🌼

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You didn’t take any antibiotics like cipro or levafloxin. They have bad side effects. Neurapathy etc

Did I ask you that already?

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I've a sub arachnoid cyst frontal lobe found by MRI scan after having belles palsy twice....was told by professor of Neurosurgery he wouldn't touch it due to location of cyst & they are not sure if I was born with it or acquired, was squashed by a stonewall when I was about 4yrs old. I've had lots of issues headaches fuzzy vision memory issues & balance , however I've also knackered neck discs gone & osteophytes which encroaching nerves & have pulsating tinnitus due to neck squishing veins & yes I'm aware millions world wide have them & some get treated especially if found in children. A website Arachnoid Cyst Foundation has lots of information which maybe helpful. I've seen a younger neurosurgeon who was willing to do something as he said it would be more difficult than most cyst but I took what the Professor said as gospel ( I would lose my personality) so be mindful if you go ahead with surgery Stents tend to get blocked & they also tend to come back....

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Hi. My name is Maria. Quick History. My had 4 strokes. As my result I have only 3 seizures, 8 TIAs, and I do not have paralyze. I have cognitive issues. My memory feels confusing if recent but not from a long time ago. I also have 4 aneurysms 2 on Rt ICA aneurysm behind ear and right rear lobe of brain. I has also have also 1 Lt ICA aneurysm behind left ear and one in on the Frontal right lobe of brain.
MY Problem: I call it my Shame its embarrassing . Since the first stroke, I have losing my comment sense. I do am I am feeling like i don't know answer comment sense questions or understand and i can't keep a job. I have also I'm have also feeling like everything is scattered and i have also I'm have also don't know how to organize or prioritize. I have also I'm have also this weird Vibration in my brain and behind and being my ears that bother me for 2 or is it 3 weeks. My days get so mixed. But I still can cook and sing and I rare and rarely sleeping i scare myself cause I'm scared my self i will have a stroke in my sleep the nightmares bad.
I feel am I am feeling cry a lot and depressed and unworthy. I have not I'm have not long distance walk ski run swim hike bungee i can't myself i can not anymore. I don't tell my my friends i don't tell because some joke about my memory and comments at me like funny weird why they i'm so great to funny make them laugh. But I don't like and frustrated and don't want tell them. I need help.

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I want to and to want add i am 50. My had 1st stroke when i was 38. I have not am not have any medications since 41. i take they have me take a blood pressure medicine and a 81mg aspirin twice in my each week. I like coffee, salads to eat healthy. I born with a Septal Atrial? Heart Defect too. what it ever its called. No issue there.
thank you to any one who read it my and read my note.

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before if before anyone does asks me and asks, I speak English am i have am don't know other language. I do not has and am not family and with only 2 good friends. I rent a room in a house i am do not i don't live want to live by myself but don't want and i don't want to tell people that.

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@mia16401

Hi. My name is Maria. Quick History. My had 4 strokes. As my result I have only 3 seizures, 8 TIAs, and I do not have paralyze. I have cognitive issues. My memory feels confusing if recent but not from a long time ago. I also have 4 aneurysms 2 on Rt ICA aneurysm behind ear and right rear lobe of brain. I has also have also 1 Lt ICA aneurysm behind left ear and one in on the Frontal right lobe of brain.
MY Problem: I call it my Shame its embarrassing . Since the first stroke, I have losing my comment sense. I do am I am feeling like i don't know answer comment sense questions or understand and i can't keep a job. I have also I'm have also feeling like everything is scattered and i have also I'm have also don't know how to organize or prioritize. I have also I'm have also this weird Vibration in my brain and behind and being my ears that bother me for 2 or is it 3 weeks. My days get so mixed. But I still can cook and sing and I rare and rarely sleeping i scare myself cause I'm scared my self i will have a stroke in my sleep the nightmares bad.
I feel am I am feeling cry a lot and depressed and unworthy. I have not I'm have not long distance walk ski run swim hike bungee i can't myself i can not anymore. I don't tell my my friends i don't tell because some joke about my memory and comments at me like funny weird why they i'm so great to funny make them laugh. But I don't like and frustrated and don't want tell them. I need help.

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Hello Maria, Welcome to Mayo Connect. I see that you are new here, so I will explain that how Connect is arranged.
Our discussion groups are by topic, and people who have a certain condition meet there and can chat and help each other. You wrote that you have had several strokes, seizures and TIA's and these have caused you to have communication and memory problems.
This is not something to be embarrassed or ashamed about - it is a medical condition.
There are some people on Connect who have recently had strokes and are dealing with the results, you can reach them by clicking this link and making a post:
https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

Is there anything I can do to help you find what you need here?
Sue

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@amandajro @sueinmn @kellyo

When is it surgery considered?
I have been deteriorating significantly. New cysts everywhere. Here’s the brain side cut of mine.

Any feedback would be greatly appreciated 🙏🏻🌼

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@lidiana

@amandajro @sueinmn @kellyo

When is it surgery considered?
I have been deteriorating significantly. New cysts everywhere. Here’s the brain side cut of mine.

Any feedback would be greatly appreciated 🙏🏻🌼

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Sorry but I am not a medical person, so cannot read your images. I will tell you though, that for many people random cysts are just a part of life. They can be filled fluid, fat or more solid tissue; they can be permanent or transient; they can remain the same size, grow or shrink.

Unless they interfere with mobility or vital organs, or are determined to be malignant (VERY rare) you just ignore them and go on with life.

Sue

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@sueinmn

Sorry but I am not a medical person, so cannot read your images. I will tell you though, that for many people random cysts are just a part of life. They can be filled fluid, fat or more solid tissue; they can be permanent or transient; they can remain the same size, grow or shrink.

Unless they interfere with mobility or vital organs, or are determined to be malignant (VERY rare) you just ignore them and go on with life.

Sue

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@sueinmn thank you so much for replying. I believe in my case they should be assessed due my history of neuroendocrine cancer. Now I have one on T1-2. They had been developing with all my symptoms. In fact my first orthostatic intolerance documented diagnosis was when the arachnoid cyst was first discovered. Now a pineal one. It’s just too much. I was just diagnosed with POTS. But I’m managing as I can and my team it’s trying their absolute best. Thanks for the feedback I really appreciate 🙏🏻🌼 Blessings of healing ❤️‍🩹

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