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 | Dec 11, 2019
In reply to @titan26 "Can I ask what happened after surgery? Did you have problems did you have seizures? My..." + (show)
@titan26

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

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Hello, good to hear from you. Seizures, yes. Well, I learned the hard way that the brain is really sensitive. Who knew? Haha. Previously, I had nothing like epilepsy but the doctor speculated that the presence of the large cyst probably over time disrupted blood flow to a particular area, and that this could have been the initiator of the Transient Epileptic Amnesia that I am now stuck with. I do not collapse or pass out, or anything like that. The seizures are confined to a particular part of the brain. Fortunately, the medicine ("Vimpat") is totally effective at suppressing it; I just have to take it twice a day for ever, and it is rather pricey. But don't fret; this particular outcome is very unusual, apparently. Most cysts do not occur where mine did, in the velum interpositum. In fact, the first doctor I consulted went the standard textbook route, and said that the cyst, as is the usual case (?), can be left untreated.
My seizures only manifested as working memory failures. Long-term memory was never affected, I think. Bbut I would not be able to form new memories such as things I had been told, events that had just occurred, even significant ones such as people who had passed away. Really strange. But now, I seem to be completely restored.
I can say, at the very least, that is has been ... educational.

REPLY
titan26 | @titan26 | Dec 11, 2019
In reply to @kyoto "Hi, I am really well. The symptoms are almost gone. The specific problem of working memory..." + (show)
@kyoto

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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Where did they do surgery? In ont?
The most difficult problem we are having is finding a neuroligist that will listen and that has experience with arachnoid cyst. I have two cyst on large on the right one smaller on the left. It the worry of what the brain may do after surgery will it shift won't it shift is the pressure different in the cyst then the cf fluid so many unknowns. Glad u are doing well gives hope that once this is gone memory may come back. I currently am on anti seizures meds they feel I am have non epileptic siezures or narcelipsey
Thank you for replies appreciate any info you can share such a scary spot to be in

REPLY
1 reply
kyoto | @kyoto | Dec 11, 2019
In reply to @titan26 "Where did they do surgery? In ont? The most difficult problem we are having is finding..." + (show)
@titan26

Where did they do surgery? In ont?
The most difficult problem we are having is finding a neuroligist that will listen and that has experience with arachnoid cyst. I have two cyst on large on the right one smaller on the left. It the worry of what the brain may do after surgery will it shift won't it shift is the pressure different in the cyst then the cf fluid so many unknowns. Glad u are doing well gives hope that once this is gone memory may come back. I currently am on anti seizures meds they feel I am have non epileptic siezures or narcelipsey
Thank you for replies appreciate any info you can share such a scary spot to be in

Jump to this post

Hi again! Yes, I was very fortunate to be living near a university hospital with a specialist neurology department. I got re-referred after the first neurologist misadvised that the cyst can be left alone. He was young, and inexperienced, I think. My wife found the university department, and the specialists there jumped straight onto my case. My cyst was huge. I couldn't believe what I saw on the MRI. It seemed to be occupying about 1/4 or a 1/3 of the space inside my skull. My memory function and IQ was borderline mental retardation, which was also a shock. About 5 days post-surgery, that memory function/IQ had completely recovered, so to that extent, the brain can respond really well to the removal of pressure. As I mentioned, though, I was left with Transient Epileptic Amnesia. But my online reading tells that this outcome is really rare.
Has your doctor suggested the possibility of any other kind of clinical side effect from your cysts?

REPLY
3 replies
titan26 | @titan26 | Dec 11, 2019
In reply to @kyoto "Hi again! Yes, I was very fortunate to be living near a university hospital with a..." + (show)
@kyoto

Hi again! Yes, I was very fortunate to be living near a university hospital with a specialist neurology department. I got re-referred after the first neurologist misadvised that the cyst can be left alone. He was young, and inexperienced, I think. My wife found the university department, and the specialists there jumped straight onto my case. My cyst was huge. I couldn't believe what I saw on the MRI. It seemed to be occupying about 1/4 or a 1/3 of the space inside my skull. My memory function and IQ was borderline mental retardation, which was also a shock. About 5 days post-surgery, that memory function/IQ had completely recovered, so to that extent, the brain can respond really well to the removal of pressure. As I mentioned, though, I was left with Transient Epileptic Amnesia. But my online reading tells that this outcome is really rare.
Has your doctor suggested the possibility of any other kind of clinical side effect from your cysts?

Jump to this post

Similar sounding nightmare as yours the neuroligist we saw was a resident so pretty young no experience and told us pysch would benefit. However he didn't look at the whole picture we originally went to Er due to some weird episodes where people thought I was drunk but I had not drank. Speech slured could not control body very limp and staggering real bad head pains no ability to grip. Memory issues also long term is not bad short term is horrible no appetite exhaustion dizziness
Only within last few years have the weird episodes where space out or random fall asleep started. Recently moved to altitude over 3000 ft now the suggestion is to go to lower altitude to see if it helps pressure in head. Lived in Ontario last few years and had problems on and off but not as severe as last 7 months
I am a bleeder that complicates risks in seurgery the paperwork for operation was being filled out just really wish could have a different neuroligist who knew about these things and has experience.
Also having vision problems the internal medicine dr does feel most of symptoms are related to cyst and the area they are in
Middle cranial fossa mass effect temporal lobe right side and I have to look up the left side it had a different description
So weird how it effects IQ did neuroligist do that testing for you?

REPLY
davelt103 | @davelt103 | Dec 13, 2019
In reply to @kyoto "Hi again! Yes, I was very fortunate to be living near a university hospital with a..." + (show)
@kyoto

Hi again! Yes, I was very fortunate to be living near a university hospital with a specialist neurology department. I got re-referred after the first neurologist misadvised that the cyst can be left alone. He was young, and inexperienced, I think. My wife found the university department, and the specialists there jumped straight onto my case. My cyst was huge. I couldn't believe what I saw on the MRI. It seemed to be occupying about 1/4 or a 1/3 of the space inside my skull. My memory function and IQ was borderline mental retardation, which was also a shock. About 5 days post-surgery, that memory function/IQ had completely recovered, so to that extent, the brain can respond really well to the removal of pressure. As I mentioned, though, I was left with Transient Epileptic Amnesia. But my online reading tells that this outcome is really rare.
Has your doctor suggested the possibility of any other kind of clinical side effect from your cysts?

Jump to this post

Please advise on what university you were seen at that did surgery? Please

REPLY
kyoto | @kyoto | Dec 13, 2019

Hello, I have just read through your previous mails and understand the range of terrible problems that you are facing. I am sorry to tell you that I do not live in the US. I live in Kyoto, Japan, hence my user name.

REPLY
kyoto | @kyoto | Dec 13, 2019

Dave, if I may call you that (I am also a Dave), I felt pretty lousy letting you know that I got treated in an overseas hospital that isn't accessible to you. I don't understand your description of your physical symptoms ("cervical level C-4"), but I just had a quick search online, with that keyword. I came up with a medical researcher called Benjamin Himes, who appears to be a specialist in this general area. His page has the Mayo Clinic logo on it, the same as this site.
Teresa, if you read this message to Davelt103, would it be possible for you to consult with Dr. Himes about where there might be a specialist near to where he lives? It sounds like he really needs some good advice, and guidance.
https://college.mayo.edu/academics/residencies-and-fellowships/neurologic-surgery-residency-minnesota/meet-our-trainees/benjamin-himes-md/

REPLY
davelt103 | @davelt103 | Dec 13, 2019

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!!

REPLY
2 replies
mjp | @mjp | Dec 14, 2019
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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Not sure if traveling to Canada would be an option for you but Toronto Western has some great neurosurgeon.
https://www.cbc.ca/radio/asithappens/as-it-happens-friday-edition-1.5308978/i-feel-very-honoured-by-this-canadian-neurosurgeon-wins-ryman-prize-for-spinal-cord-research-1.5309288

REPLY
mjp | @mjp | Dec 21, 2019
In reply to @mjp "There has been some development since I last posted, I had my second MRI with dye,..." + (show)
@mjp

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!

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Well, things have developped quickly, I went to my neurosurgeon appointment in Montreal and got admitted the same day. He was planning on surgery that day but got hold up by heart specialist go ahead, but surgery happened the next day. Surgery was very successful and I got out of hospital yesterday. I am doing well and surgeon is pretty happy with the results, I have follow-up appointments and MRI in one month and two months post surgery. I feel so blessed to have an amazing surgeon that cared, it made a whole world of difference!

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