1. < Spine Health

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.

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mjp | @mjp | Sep 21, 2020
In reply to @colleenyoung "@mjp, ependymal cysts are quite rare from my understanding. You must've been relieved to hear in..." + (show)
@colleenyoung

@mjp, ependymal cysts are quite rare from my understanding. You must've been relieved to hear in June that it has shrunk by 50%. Delays due to COVID are happening in health care systems across the nation. I would follow up with the referring physician and resubmit the requisition.

How are you managing your symptoms? Which one causes you the most concern?

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I asked my family doctor for a referral for pain management back in February, I followed up last week and it was never sent out, very frustrating...so still praying for an answer, in the meantime relying mainly on essential oils (peppermint, past tense,...) for headaches/migraines, massage therapy also helps. My symptoms have been getting worse with the temperature changes the last couple of weeks, my brain does not like the cold weather anymore!

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dkhouri | @dkhouri | Oct 15, 2020

I have arachnoiditis and I am at the end of my rope looking for a doctor to help me!! I've spent over a year trying to find someone. I "live" in MA, if you can call this "living." I will go anywhere for help. Does anyone have any doctor they can recommend? Please help!

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hjaafar32 | @hjaafar32 | Apr 26, 2022

Hello everyone,

Over the last year, I started getting these weird "zap" like sensations in my brain at night. I didn't think much of them until they woke me up out of my sleep one night. I was working in a very high stress, toxic situation so I was under the assumption that it probably had to do with stress (naive of me or not)

Nevertheless, since then, I scheduled an appointment with a neurologist who ordered an MRI on my brain thinking it may have something to do with nerve damage on one side of my head.

The MRI came back with a Pineal Cyst as some of you have mentioned dealing with yourselves. The neurologist referred me to a Neurosurgeon who essentially made me feel like I was crazy. He says none of the symptoms could be from that and he's only suggested to monitor it periodically which I assume is standard practice.

My MRI was just last month, so this is relatively new... I don't seem to have any of the symptoms like migraines or dizziness, however, now I get these very strong ringing sounds in my head at night and they seem to start coming in the day time every now and then too. I've since left my stress-filled job but am I terrified of the daily side effects which again the neurologist and neurosurgeon are adamant it's not from the cyst.

My question is, the "zaps" seem to have died down but has anyone dealt with these newfound "ringing" sensations I get in my head. The best way to describe them is similar to a High Pitched Audio Feed Sound when a microphone or telecom get plugged in... any insight or experience with this would be greatly appreciated.

REPLY
1 reply
Amanda Roe | @amandajro | Apr 27, 2022
In reply to @hjaafar32 "Hello everyone, Over the last year, I started getting these weird "zap" like sensations in my..." + (show)
@hjaafar32

Hello everyone,

Over the last year, I started getting these weird "zap" like sensations in my brain at night. I didn't think much of them until they woke me up out of my sleep one night. I was working in a very high stress, toxic situation so I was under the assumption that it probably had to do with stress (naive of me or not)

Nevertheless, since then, I scheduled an appointment with a neurologist who ordered an MRI on my brain thinking it may have something to do with nerve damage on one side of my head.

The MRI came back with a Pineal Cyst as some of you have mentioned dealing with yourselves. The neurologist referred me to a Neurosurgeon who essentially made me feel like I was crazy. He says none of the symptoms could be from that and he's only suggested to monitor it periodically which I assume is standard practice.

My MRI was just last month, so this is relatively new... I don't seem to have any of the symptoms like migraines or dizziness, however, now I get these very strong ringing sounds in my head at night and they seem to start coming in the day time every now and then too. I've since left my stress-filled job but am I terrified of the daily side effects which again the neurologist and neurosurgeon are adamant it's not from the cyst.

My question is, the "zaps" seem to have died down but has anyone dealt with these newfound "ringing" sensations I get in my head. The best way to describe them is similar to a High Pitched Audio Feed Sound when a microphone or telecom get plugged in... any insight or experience with this would be greatly appreciated.

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Hello @hjaafar32 and welcome to Mayo Clinic Connect. I want to say, first, good for you to leave your job that was causing you that much stress! Regardless of that was part of what you have going on with your symptoms or not, stress certainly can manifest into many different health issues.

After reading your post, I wonder if you've considered a second opinion based on your strong feeling/intuition as to what may be factoring into the cause of your zaps and ringing?

Also, what if anything, have you tried so far?

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kyoto | @kyoto | Aug 18, 2022
In reply to @davelt103 "Thank you so very much for your reply Dave, I appreciate it very very much and..." + (show)
@davelt103

Thank you so very much for your reply Dave, I appreciate it very very much and yes I am in excruciating pain on a daily/hourly basis and I am trying to reach out to get help with my situation and you have at least given me an avenue to explore. I was in Rochester, MN for a surgical consult, referred by my pain specialist from St. Paul's Regions hospital, but I missed my appointment because I ended up in the ER @ St. Mary's hospital in Rochester MN, I was admitted and was afforded the opportunity to see one of the Dr.s from neurosurgery (not the one I was scheduled to see) he is not convinced that my pain is from the arachnoid cyst on my spinal cord. (I disagree!!) he wants me to come back in January for an occipital nerve block and trigger point injections. Blah! I have already had both of these procedures numerous times before, they have NOT worked. Plus in January it is very cold here in Minnesota and I live 2 1/2 hours north of Rochester and I DON'T travel well because of the pain associated with bumpy Minnesota winter roads!
So I am going to look up this doctor that you have recommended and see if I can see him instead of this other surgeon that was not confident about trying to do surgery and fenistrate the cyst, which I feel would be the best . But I will not do surgery at all they are going to make me worse than I am, unfortunately I am a quadriplegic I have been for 30 years. The Dr.s in St. Paul they are saying that if they do surgery that I will not be able to swallow again forever!! I can't do that!!

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Hello, it's been over two years since I checked into this site, and I have reread your messages. In this intervening time, how have things gone for you?
I have had an "interesting" time. It became clear that I have an associated condition called Epileptic Transient Amnesia. This is connected to the position of the original cyst on the memory parts of the brain. I don't get full body fits but fits inside the brain only. And I'm completely unaware of them. Over time, it's become clear that I do not have Alzheimer's, or anything similar, but just loss of new memories when one of these epileptic fits occurs. Regular anti-epileptic drugs work to alleviate symptoms, but not totally. I'm still trying to work out how to improve my situation.
If you care, kindly give me an update on your situation,
Best regards,
David

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danielle0313 | @danielle0313 | Sep 23, 2022

Hi Kellyo,
I know this is an old post and may not be on this forum anymore. If you are, how are you doing?

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1 reply
kyoto | @kyoto | Sep 23, 2022
In reply to @danielle0313 "Hi Kellyo, I know this is an old post and may not be on this forum..." + (show)
@danielle0313

Hi Kellyo,
I know this is an old post and may not be on this forum anymore. If you are, how are you doing?

Jump to this post

Hello, were you writing to me? I've been better on medication, but still working out how to be more mindful in my daily life to keep the memory gaps from impeding my daily life and schedule too much.
How are you?
David

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4846 | @4846 | Nov 1, 2022

Arachnoid cyst 3x 1.7 is displacing cranial nerves 9&10 seen in tesla 3 mri Dec 2020. Doing repeat Nov 9. Head throbbing whole body. Drs said do not worry about it. It’s common Now new dr says should have checked it a lot! sooner with all my idiopathic issues small fiber neurapathy. Nerve pain all over. They were looking for cause of facial head neck pain Neuroligist said didn’t see any reason. I asked about the cyst and nerves. Like I said above said no worries it’s common

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lidiana | @lidiana | Nov 16, 2022

@kellyo thanks for sharing your experience 🌼 I also have experience a lot of the symptoms you mentioned. I have one on top of the cerebellum and now a pineal one. I have been diagnosed with HSD type of connective tissue disorders and POTS type of Dysautonomia. I’m so sick but I honestly don’t understand if any of the cysts in my brain it’s affecting my overall symptoms and now period issues, imbalances, etc (more details on other of my discussions about diagnosis).

So if anyone here has symptoms related to pineal gland on the brain please help 🙏🏻 any feedback would be greatly appreciated 🌼 blessings of healing ❤️‍🩹

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4846 | @4846 | Nov 16, 2022

Hi.
Did your symptoms start after an infection illness trauma or a meds reaction

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