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.

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

yooshau | @yooshau | Dec 21, 2018

Today my wife went hospital and came having diagnosed with arachnoid cyst in brain.The dr said to go to a specialist.I have no much information.Pls can anybody give any information .

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3 replies
Moderator
Lisa Lucier, Moderator | @lisalucier | Dec 21, 2018
In reply to @yooshau "Today my wife went hospital and came having diagnosed with arachnoid cyst in brain.The dr said..." + (show)
@yooshau

Today my wife went hospital and came having diagnosed with arachnoid cyst in brain.The dr said to go to a specialist.I have no much information.Pls can anybody give any information .

Jump to this post

Hi, @yooshau,
Welcome to Mayo Clinic Connect. You may notice that I moved your post and combined it with this existing discussion on arachnoid cyst so that you can be introduced to the many members who have discussed your wife's new diagnosis, like @cmay5691@em87 @kyoto @johnbishop @bessiealice and others.

If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

With a brand new diagnosis, I'm sure you and your wife have many questions. I trust the other members here will have some insights for you.

If you are interested in contacting Mayo Clinic to request an appointment to see a specialist, please see this link http://mayocl.in/1mtmR63.

What symptoms was your wife experiencing, @yooshau, that led her to see a doctor?

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 21, 2018
In reply to @yooshau "Today my wife went hospital and came having diagnosed with arachnoid cyst in brain.The dr said..." + (show)
@yooshau

Today my wife went hospital and came having diagnosed with arachnoid cyst in brain.The dr said to go to a specialist.I have no much information.Pls can anybody give any information .

Jump to this post

@yooshau,
I would like to add my welcome to Connect along with Lisa and other members. I agree with @lisalucier - If possible, I think that Mayo Clinic would be an excellent choice to see a specialist as all of the specialists work as a team to diagnose and treat the patient. Here is some information on arachnoid cysts on the National Organization for Rare Disorders website:

-- https://rarediseases.org/rare-diseases/arachnoid-cysts/

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kydanzer | @kydanzer | Dec 21, 2018

How did you find research about the cyst being linked to C sections? How are you doing now?

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mcphersonolivia | @mcphersonolivia | Jan 1, 2019

Hi I am 23, myself was diagnosed with a cyst on my brain on my left side, but also I have high pressure and swelling in my brain. The put me on medicines and shipped me off. The medicine does not help nothing. It was for swelling and pressure but it just isn’t helping anymore. 2 weeks almost three and the pain had became so bad. I am a mother of two kids and this has taken everything from me. I have dealt with since migraines neck pain where I can not even move my neck tingling numbness in my face neck arms and even my legs. The pain is so unbearable I work and I can’t even do that because of the pain but I push through it because of my kids and being single. The doctors say the pain tingling and burning I deal with has nothing to do with my cyst. I’ve dealt with the random tingling and numbness for two years and finally couldn’t do it anymore then that’s how I was diagnosed. There are days I don’t even know where I am. Or even my own age. I deal with being so tired through the day and just can’t sleep at night because of the pain that I am now dealing with down my spine. I just went and had an X-ray that showed I have another spot on my spine in my lower back an they sent me to have a CT done to locate exactly where and what it is. I pray to god every day to heal me and to allow me to be a better person and mother because I deal with crying anger and anything else of that nature. They tried saying it could be because my hormones being my age. But I know better. I just want relief. I am willing to go to the extent to do anything and beg for help but I try and they won’t do nothing. But why. Not only am I suffering but my kids are, my family, my friends, even my boss. She has giving me a chance to keep my job even though I am this way and days where I’m shaking so bad or can’t even open my eyes she allows me to not work and still gives me hope to keep my job. I myself would love for help and more answers. I feel weak and like I am dying slowly inside. May sound weird to some of you but I am sure there is others that have the same problem and feelings.

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kyoto | @kyoto | Jan 1, 2019

Oh my word. You're suffering badly. You wrote, "There are days I don’t even know where I am. Or even my own age." Are you having a lot of memory trouble? That happened to me, and it was because of the position of the cyst. What did the CT show about where it is in your brain?

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cmay5691 | @cmay5691 | Jan 7, 2019
In reply to @em87 "I feel for you! It's frustrating waiting for answers and help. My results literally say "causing..." + (show)
@em87

I feel for you! It's frustrating waiting for answers and help. My results literally say "causing mass effect on right cerebrum" but they're trying to tell me that's not the cause of my headaches and other symptoms. I hope you find an answer and relief soon!

Jump to this post

Found relief for my headaches finally!!!! Started seeing a chiropractor and my headaches have mostly disappeared. Have had a slight headache a few times since going but for the most part, they are gone!! I finally have a life again and can actually function on a daily basis.

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tee9 | @tee9 | Jan 7, 2019
In reply to @lisalucier "Hi, @kyoto - sounds like you are experiencing many benefits of your surgery for your arachnoid..." + (show)
@lisalucier

Hi, @kyoto - sounds like you are experiencing many benefits of your surgery for your arachnoid cyst, including a much sharper, restored memory. It also sounds like you are having occasional periods of recurrence of symptoms. What types of symptoms have come back at times?

@matthewlucas052513 @mango - you posted previously about an arachnoid cyst. Wondering how it's going?

@husbandandwife - you mentioned a cyst that had been removed and grew back. Wondering how things have gone with that recently?

Jump to this post

Hello All - Recently found arachnoid cyst temporal lobe. Did the MRI due to neverending headache, severe light sensitivity, face spasm, etc, etc.2 Neurologists, 2 Neurosurgeons and several medications later-everyone says cyst is not the problem, but giving no other reasonable cause. I realize others have suffered much longer than me. Had motorcycle accident 7 years ago landed on same side as my cyts...Looking for a neurologist and/or surgeon that is willing to at least try draining/opening this thing. Can anyone make any suggestions? Am in Southern California but willing to travel. At the end of my rope I cannot continue living this way -this isn't living. Thank you for taking the time to read my post.
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1 reply
tee9 | @tee9 | Jan 8, 2019
In reply to @kyoto "Hello @em87, I am sorry to hear that you are suffering with such discomfit. Something that..." + (show)
@kyoto

Hello @em87, I am sorry to hear that you are suffering with such discomfit. Something that you wrote especially caught my attention. That was, "It seems that many neuros think that these cysts don't cause issues." That was the same experience that I had. I had a sub-arachnoid cyst, but the neurologist said that it can be left as it is. I subsequently found, in wikipedia or somewhere, that this is a general clinical position about such cysts. I was surprised because mine was huge, like yours. My wife couldn't accept this assessment, partly because I had severe memory disturbance, due to the position of my cyst. We ended up in another hospital, where the doctors quickly recommended surgery. I wasn't happy about that at first, but the surgery was successful, through a small hole in the top of my forehead. (The scar is really minimal). The change post-surgery was dramatic. And that was due to the relief of pressure the cyst was exerting. It may well be the same in your case. In any event, I urge you to keep persisting. Best wishes, David

Jump to this post

Hi @kyoto - Could you reply with the name of the hospital or doctor that did your surgery? I am hitting brick walls at every turn and getting worse by the day.
Thank you

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1 reply
tee9 | @tee9 | Jan 8, 2019
In reply to @em87 "Hello. I have been having intense headaches and dizziness, numbness and tingling, and "brain fog". I..." + (show)
@em87

Hello. I have been having intense headaches and dizziness, numbness and tingling, and "brain fog". I had an MRI done and there is an arachnoid cyst located towards the front right side of my parietal lobe. It is 5.8 cm x3.8 cmx 2.7cm, that is an increase from 5.1 x 2.8 x 2.4 two months prior. I see a neurologist in January but the doctors in the ER said they didn't think it was what was causing my symptoms. I don't know what to do or who to consult at this point.

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@em87 have you found anyone yet who will connect your symtoms to cyst?

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