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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kyoto | @kyoto | Oct 30, 2019

Hi,

Thank you for sharing. That explanation doesn't mean much to a non-specialist, except to say that my cyst was also intraventricular. Not the lateral one, I think.
How are you feeling? This all really leaves you feeling a bit dumbfounded, doesn't it?
If I can give you any encouragement, my recovery was rapid and I was up and about pretty quickly.
I really feel for you!

REPLY
1 reply
mjp | @mjp | Nov 1, 2019
In reply to @kyoto "Hi, Thank you for sharing. That explanation doesn't mean much to a non-specialist, except to say..." + (show)
@kyoto

Hi,

Thank you for sharing. That explanation doesn't mean much to a non-specialist, except to say that my cyst was also intraventricular. Not the lateral one, I think.
How are you feeling? This all really leaves you feeling a bit dumbfounded, doesn't it?
If I can give you any encouragement, my recovery was rapid and I was up and about pretty quickly.
I really feel for you!

Jump to this post

Thanks for the encouragement Kyoto much appreciated. It has been a tough couple days... physically and emotionally. On the positive side, I just got a call for my specialized MRI for Monday 9pm. I also asked for a referral to another specialist in Toronto who did brain surgery on a colleague from work, will see where that takes me...

REPLY
1 reply
titan26 | @titan26 | Nov 19, 2019
In reply to @gingerbread14 "Hi all I'm new to this I'm a 36 year old male and have been diagnosed..." + (show)
@gingerbread14

Hi all I'm new to this I'm a 36 year old male and have been diagnosed with an arachnoid cyst I'm experiencing eye problems,severe diziness and have a bilateral tremor in my hands but I'm told these are nit the symptoms of a cyst, I'm really confused by this has after going to my gp about 20 times I was relieved when thought id found the problem but now I feel like I'm back to square one its really devastating my life and would be so so grateful of any help thankyou

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Hi @gingerbread14 I am curious how or what has happened with your cyst? My son was receny diagnosed and has had a similar experience to yours

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titan26 | @titan26 | Nov 19, 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

My son also has mass effect and same thing so much confusion and lack of help with all of this. We had internal medicine tell us mass effect indeed is having an impact on my son and symptoms. Yet we see neuroligist and they say no ...they say it's pushing on his brain but not iratating it...how can that be?? If something's pushing the. Brain and you know that and have symptoms how can it be said it's not iratating ????

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davelt1033 | @davelt1033 | Dec 9, 2019

I too have many of the same debilitating side effects that were brought on after epidural that was supposed to help relieve pain. I am at my wits and the pain is constant 24/7. Is there any help that can be had? I am certainly willing to do just about anything but I will not do cervical spine surgery that will be more debilitating. Because I am already a quadriplegic and all I have is above the shoulders. Please recommend help Help!

REPLY
davelt103 | @davelt103 | Dec 9, 2019
In reply to @kyoto "Hello, I am sorry to hear about your unidentified symptoms. I have read quite a lot..." + (show)
@kyoto

Hello, I am sorry to hear about your unidentified symptoms. I have read quite a lot about subarachnoid cysts over the past three years, and I had surgery for one in summer 2017. At that time, I was initially told to go home and not worry by the first neurologist. My wife was getting frantic with my memory loss and confusion. She kept pushing and within a couple of weeks, I had a definitive evaluation that I needed immediate surgery. The surgery was highly successful. At about that time, I had developed tinnitus, but the surgeon ruled out any connection between it and the cyst. I have had no problem with smell, and I don't recall anything about it from the reading I have done.

On MRIs, a cyst can appear as a milky white, or dark, blob at the edge or the middle of the brain. They can be pretty large. This is the first image from Wikipedia. https://en.wikipedia.org/wiki/Arachnoid_cyst

My experience seems to be that the location of the cyst can exert specific impacts on neurological function, but often amnesia and dizziness, due to the pressure the cyst exerts on the surrounding tissue. Cysts develop when brain fluid gets trapped inside a normal membrane. As far as I know, these cysts usually do not resolve on their own. The treatment basically involves puncturing the cyst wall. If they are not causing trouble, it seems that surgery may not be necessary (which is why I got the "dont worry" advice from the first neurologist). But if the cyst is in an esssential area they can cause a lot of trouble.
Keep pushing for answers.
Let us know what you find out.

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Where did you get surgical support? I will most likely be needing surgery so please recommend a surgeon for me , an where in the country is it located ? Thank you, Dave

REPLY
mjp | @mjp | Dec 11, 2019
In reply to @mjp "Thanks for the encouragement Kyoto much appreciated. It has been a tough couple days... physically and..." + (show)
@mjp

Thanks for the encouragement Kyoto much appreciated. It has been a tough couple days... physically and emotionally. On the positive side, I just got a call for my specialized MRI for Monday 9pm. I also asked for a referral to another specialist in Toronto who did brain surgery on a colleague from work, will see where that takes me...

Jump to this post

There has been some development since I last posted, I had my second MRI with dye, and I have been referred to a neurosurgeon in Montreal and will have my initial consultation on Monday.

I have been having some additional symptoms as well, tingling of the scalp pretty much all the time now, occasional localized burning sensation of the scalp, intermittent internal vibrations and the palpitations every time I change position.

I have been using Doterra essential oils to help with my various symptoms, as I am not a big fan of pills and it does help tremendously. My sister is a Doterra rep, so I am a good candidate for testing her products too! I was told yesterday to not take any medication between now and then, so hoping it is a good sign that I may have surgery sooner rather then later. In the meantime, keeping the faith!

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 11, 2019
In reply to @kyoto "Hello @mjp, I went through an arachnoid cyst two years ago, when I was also 48...." + (show)
@kyoto

Hello @mjp,

I went through an arachnoid cyst two years ago, when I was also 48. My cyst also looked enormous on the MRI and CAT scans. It’s quite shocking, isn’t it? Do you know if yours is lodged between your skull and brain or deeper down? Mine was deeper down and pressing on the fornix, which is part of the memory-creating apparatus. Of the symptoms that you are having, I had headaches, nausea and short-term memory loss. I am a college lecturer, and (apparently) I would forget what I had just said in class. Although my wife was very disturbed by it all, I was unaware of this particular issue of forgetting. It’s only when the doctor showed me the image of the huge cyst that I really got it. I was given memory tests, and my IQ level was so low that the doctor said without surgery I would get to a dementia-like stage. The surgery wasn’t fun, but couldn’t be avoided.
The outcome was initially very good, and my IQ levels had bounced right up a few days after surgery. On the other hand, subtle memory loss continued and I got diagnosed with Transient Epileptic Amnesia at the end of last year. This isn’t the well-known fitting kind of epilepsy but silent memory fails. I would not recognize people I had previously met, for example. I was started on anti-convulsant medicine and that issue is now under control, although I have to stay on this drug permanently. It was mentioned as a risk of surgery on the consent form.
Around the time of surgery, I also developed tinnitus, but the doctor shook his head when I asked if it is related to the cyst. I do not know why he considered it unrelated. So I am interested to hear you have a similar issue. In my case, it is a low constant ringing. It doesn’t disturb me too much and I have had no treatment for it.
The surgery itself left a small indentation on top of my head, but the scar is gone. The surgery involved draining the cyst and closing up the tissue again. Physically, I recovered completely. Good luck, and get back and let us know how it’s going.
David

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Hello @kyoto,

It has been a while since you last posted. Are you continuing to feel the benefits of the surgery you had a couple of years ago? I look forward to hearing from you.

REPLY
1 reply
titan26 | @titan26 | Dec 11, 2019
In reply to @mjp "Hello @kyoto, Shocking indeed that I have been able to function all these years with this..." + (show)
@mjp

Hello @kyoto,

Shocking indeed that I have been able to function all these years with this thing in my brain!

Although looking back, it explains a lot of things that I just blamed on either being clumsy, all thumbs, forgetful or absent minded.

I wish I would have a copy of the actual report , I will add another picture.

The neurosurgeon did mention the possibility that my brain may not like its new shape and form, consequently I may have epilepsy episods as a result.

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Can I ask what happened after surgery? Did you have problems did you have seizures? My cyst has been with me for my life I just turned 26. Surgeon is worried about what it how brain will react or if it will move as it's been use to this thing pushing on it for so long

REPLY
1 reply
kyoto | @kyoto | Dec 11, 2019
In reply to @hopeful33250 "Hello @kyoto, It has been a while since you last posted. Are you continuing to feel..." + (show)
@hopeful33250

Hello @kyoto,

It has been a while since you last posted. Are you continuing to feel the benefits of the surgery you had a couple of years ago? I look forward to hearing from you.

Jump to this post

Hi, I am really well. The symptoms are almost gone. The specific problem of working memory disruption is completely under control with the anti-convulsant medication, which I take twice a day. It is odd to describe yourself as having to take "anti-convulsants", but the alternative of having these silent epileptic seizures is much worse. The cyst is gone, and apparently there is no reason to worry that it may return, according to the doctor. Occasionally, I get severe headaches that do not respond well to regular painkillers, and at those times, I begin to worry a bit, but they go away again. Functionally, which is the important thing, I am absolutely fine.
How are you?

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