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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em87 | @em87 | Nov 29, 2018
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

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Thank you for your reply David. It gives me some hope that a doctor may take me seriously.

REPLY
cmay5691 | @cmay5691 | Nov 30, 2018
In reply to @em87 "I've tried moving my appointment up but they said the best they could do is put..." + (show)
@em87

I've tried moving my appointment up but they said the best they could do is put my name on the cancellation list. I've been waiting since August. The original ER doctor was concerned and at the time I had been having a headache for 8 days with no relief. He tried to transfer me out but they wouldn't accept me because I had been having headaches prior to that event so it wasn't considered acute. The neuro he consulted with didn't seem concerned and so I followed up with my regular doctor. My regular doctor set up the neuro referral and when I called to confirm my appointment they said the referral said it was for migraines and didn't even mention the cyst at all. That surprised me since it's kind of big. I'm just so tired all the time and even now have an intense headache. It seems that many neuros think that these cysts don't cause issues. I wish they could see the overwhelming amount of people who DO in fact suffer symptoms. My headaches, fatigue, and dizziness have become so bad that I am no longer working and it's really impacting my life. I just want my life back.

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@em87 I would check to make sure you are seeing the correct doctor. My family doctor set me up with a neurologist the first appointment which took a month of waiting. I really needed to be seen by a neurosurgeon. Now after another month, I go to him next week for an arachnoid cyst. I have been having the same symptoms as you with the arm, headaches, fatigue, etc. I don't want you having to wait any longer by going to the wrong type of doctor.

REPLY
1 reply
cmay5691 | @cmay5691 | Nov 30, 2018
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

David, how long was your recovery following your surgery?

REPLY
1 reply
kyoto | @kyoto | Nov 30, 2018
In reply to @cmay5691 "David, how long was your recovery following your surgery?" + (show)
@cmay5691

David, how long was your recovery following your surgery?

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Hello, my recovery was remarkably quick. My worst symptom was severe short-term memory disruption, due to the cyst pressure on a nerve-fiber bundle component running out of the hippocampus called the fornix. This apparently plays an important role in memory formation. Once the pressure was removed, the change in my memory test scores was enormous. This happened within days. It was quite remarkable. Of course, the headaches etc. were also relieved. I have had some backsliding on memory function, which is a bit of a mystery as the cyst is basically gone (fenestrated, as they call it), but it is still way better than at the height of the problem. If nothing else, I can say this has been educational...

REPLY
1 reply
cmay5691 | @cmay5691 | Nov 30, 2018
In reply to @kyoto "Hello, my recovery was remarkably quick. My worst symptom was severe short-term memory disruption, due to..." + (show)
@kyoto

Hello, my recovery was remarkably quick. My worst symptom was severe short-term memory disruption, due to the cyst pressure on a nerve-fiber bundle component running out of the hippocampus called the fornix. This apparently plays an important role in memory formation. Once the pressure was removed, the change in my memory test scores was enormous. This happened within days. It was quite remarkable. Of course, the headaches etc. were also relieved. I have had some backsliding on memory function, which is a bit of a mystery as the cyst is basically gone (fenestrated, as they call it), but it is still way better than at the height of the problem. If nothing else, I can say this has been educational...

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Thank you for your response David! Hope I have a good outcome too!

REPLY
em87 | @em87 | Dec 8, 2018
In reply to @cmay5691 "@em87 I would check to make sure you are seeing the correct doctor. My family doctor..." + (show)
@cmay5691

@em87 I would check to make sure you are seeing the correct doctor. My family doctor set me up with a neurologist the first appointment which took a month of waiting. I really needed to be seen by a neurosurgeon. Now after another month, I go to him next week for an arachnoid cyst. I have been having the same symptoms as you with the arm, headaches, fatigue, etc. I don't want you having to wait any longer by going to the wrong type of doctor.

Jump to this post

How did your appointment go?

REPLY
1 reply
cmay5691 | @cmay5691 | Dec 9, 2018
In reply to @em87 "How did your appointment go?" + (show)
@em87

How did your appointment go?

Jump to this post

Went to the neurosurgeon and he wasn't too concerned over the cyst thing. Talked like it would do more harm than good to do anything for it. Sending me for another MRI (this time of my neck) to check for a pinched nerve (which I thought was the problem all along). So 2 months later I'm still waiting to figure out what's going on. I have the next MRI next week. Still hanging in the air!!! 😕

REPLY
2 replies
em87 | @em87 | Dec 9, 2018
In reply to @cmay5691 "Went to the neurosurgeon and he wasn't too concerned over the cyst thing. Talked like it..." + (show)
@cmay5691

Went to the neurosurgeon and he wasn't too concerned over the cyst thing. Talked like it would do more harm than good to do anything for it. Sending me for another MRI (this time of my neck) to check for a pinched nerve (which I thought was the problem all along). So 2 months later I'm still waiting to figure out what's going on. I have the next MRI next week. Still hanging in the air!!! 😕

Jump to this post

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!

REPLY
3 replies
cmay5691 | @cmay5691 | Dec 10, 2018
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

Thank you @em87! I am so very frustrated trying to get answers. Having headaches and other symptoms for some reason. Can't live like this everyday of my life!!! And the time wasted between appointments is awful. I've missed lots of work so I'm lucky I still have my job for now.

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luky2girls | @luky2girls | 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 .

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luky06.İ do not know taht disease but,i am going to ask a doctor.

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