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 | Feb 26, 2020
In reply to @mjp "Hi Kyoto, was your cyst drained completely? My fenestration was done through the third ventricule and..." + (show)
@mjp

Hi Kyoto, was your cyst drained completely? My fenestration was done through the third ventricule and it is draining very slowly. My symptoms are not going away as fast as I had hoped. My CT Scan after one month post surgery showed some progress, but not significantly, I will have another follow up with the neurosurgeon and CT scan 3 months post surgery. I have foggy brain and headaches and/or migraines pretty much daily and I still have paresthesia (numbness of my forehead and tingling of my scalp on and off. My vision is still blurry/double and I still have palpitations for which they have done ECG, CT scan, echocardiogram and 72 hours Holter test...which all came back normal. I did some research and I believe it is Postural Orthostatic Tachycardia Syndrome POTS) as this is happening pretty much every time I change position...my heart rate goes up 30-50 bpm when I get up in the morning, if I do laundry it goes over 160, I am not running marathon here! I have been referred in Cardiology, I hope they can do a tilt table test to confirm this but not holding my breath, as POTS is not very well known here in Canada and often misdiagnosed. As for my vision, I have been referred to an ophthalmologist but there is a 4-5 months waiting list.

Anybody in this group experiencing similar symptoms? I was wondering if acupuncture would help with the paresthesia and headache? I also did some research on low laser therapy but not sure if is safe/applicable for head/brain?

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I am confused and a bit concerned about my situation. My doctor is confident that cyst was drained. However, I continue to have intermittent headaches and pressure in my head and neck. I asked the doctor various times about it, but he doesn't seem to think that another scan is necessary.
I have no symptoms such as blurry vision or palpitations. I have never done acupucture. Why not try? It won't do you any harm! Please let us know.
David

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 11, 2020
In reply to @kyoto "I am confused and a bit concerned about my situation. My doctor is confident that cyst..." + (show)
@kyoto

I am confused and a bit concerned about my situation. My doctor is confident that cyst was drained. However, I continue to have intermittent headaches and pressure in my head and neck. I asked the doctor various times about it, but he doesn't seem to think that another scan is necessary.
I have no symptoms such as blurry vision or palpitations. I have never done acupucture. Why not try? It won't do you any harm! Please let us know.
David

Jump to this post

Hi, @kyoto - how are things going with the headaches and pressure you were experiencing?

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1 reply
kennethracey | @kennethracey | Mar 14, 2020

After my visit with my neurologist on March 10th. After I explained to her anything that speeds up my metabolism such as Lipozene, Hydroxycut, 5 hour energy, Rock Star. Etc. I have seizures during the night. She informed me my MRI test showed I have a Arachnoid Cyst on my brain She is wenning me off of Keppra and replacing with Topiramate to control these seizures this cyst is causing.

QUESTION 1). Is this medication something I will have to take the rest of my life like high blood pressure medicine?

QUESTION 2). Has any one had a shunt surgery to remove fluid from the cyst? And would you recommend it? And how big of scare does it leave?

QUESTION 3). Does anyone know of any herbal supplements or vitamins on the market that will reduce the cyst naturally?

Please!!!!!! Respond I would appreciate some input on this.

REPLY
Ethan McConkey, Moderator | @ethanmcconkey | Mar 14, 2020

Hi @kennethracey I can only imagine all that is going through your head at this point. You may have noticed I moved your post to this existing discussion on arachnoid cysts so that you can connect and learn with others who have similar experiences. Simply click VIEW & REPLY on your email notification to see your post.

@kyoto @mjp and @djb0711 have all mentioned arachnoid cysts in the past and may be able to offer you support and help you find answers to your questions.

Back to you @kennethracey, what has your research shown?

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2 replies
kyoto | @kyoto | Mar 15, 2020
In reply to @lisalucier "Hi, @kyoto - how are things going with the headaches and pressure you were experiencing?" + (show)
@lisalucier

Hi, @kyoto - how are things going with the headaches and pressure you were experiencing?

Jump to this post

Hi LIsa, thanks for asking. I do get headaches still; recently I wonder if they are caused by tight shoulder muscles. Is that a thing?

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kyoto | @kyoto | Mar 15, 2020
In reply to @ethanmcconkey "Hi @kennethracey I can only imagine all that is going through your head at this point...." + (show)
@ethanmcconkey

Hi @kennethracey I can only imagine all that is going through your head at this point. You may have noticed I moved your post to this existing discussion on arachnoid cysts so that you can connect and learn with others who have similar experiences. Simply click VIEW & REPLY on your email notification to see your post.

@kyoto @mjp and @djb0711 have all mentioned arachnoid cysts in the past and may be able to offer you support and help you find answers to your questions.

Back to you @kennethracey, what has your research shown?

Jump to this post

Yes, I had quite a severe subarachnoid cyst. Basically, the surgery was very successful, although I retain some carry-over issues. Nothing too serious though. It's more of case of learning new strategiest to cope.
Please share your questions and concerns.

REPLY
mjp | @mjp | Mar 15, 2020
In reply to @ethanmcconkey "Hi @kennethracey I can only imagine all that is going through your head at this point...." + (show)
@ethanmcconkey

Hi @kennethracey I can only imagine all that is going through your head at this point. You may have noticed I moved your post to this existing discussion on arachnoid cysts so that you can connect and learn with others who have similar experiences. Simply click VIEW & REPLY on your email notification to see your post.

@kyoto @mjp and @djb0711 have all mentioned arachnoid cysts in the past and may be able to offer you support and help you find answers to your questions.

Back to you @kennethracey, what has your research shown?

Jump to this post

Hi Lisa,

Cyst fenestration or shunt are usually the two options neurosurgeon recommend. I personally prefer fenestration because of the issues linked with shunt (infections, blockages, displacement...).

I was still suffering with heart palpitations and severe headaches/migraines (intracranial hypertension) after my cyst fenestration surgery so I went to see my cardiologist and he recommended beta blockers (bisoprolol). I am not big fan of pills but thought I would give it a try.

I am on day 3 and turns out it helps with both my palpitations and the headaches, so far so good!

Hopefully, this is just a temporary fix and the palpitations and headaches will eventually go away, but in the meantime I am happy to get some relief.

Hope this helps,

MJP

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 17, 2020

Hi all, as anxieties increase and social interaction is limited with the COVID-19 virus, Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

REPLY
mjp | @mjp | Sep 11, 2020
In reply to @mjp "Hi Lisa, Cyst fenestration or shunt are usually the two options neurosurgeon recommend. I personally prefer..." + (show)
@mjp

Hi Lisa,

Cyst fenestration or shunt are usually the two options neurosurgeon recommend. I personally prefer fenestration because of the issues linked with shunt (infections, blockages, displacement...).

I was still suffering with heart palpitations and severe headaches/migraines (intracranial hypertension) after my cyst fenestration surgery so I went to see my cardiologist and he recommended beta blockers (bisoprolol). I am not big fan of pills but thought I would give it a try.

I am on day 3 and turns out it helps with both my palpitations and the headaches, so far so good!

Hopefully, this is just a temporary fix and the palpitations and headaches will eventually go away, but in the meantime I am happy to get some relief.

Hope this helps,

MJP

Jump to this post

I was told my cyst is actually an ependymal cyst at my last follow up with CT scan in June, which showed a subacute subdural hematoma and the cyst has shrunken to half its original size. I was supposed to have another follow up mid September to keep an eye on the hematoma but imaging Dept never got the requisition and there are delays backlog due to Covid...not sure when this will be now. I still have symptoms, headaches, memory and concentration issues, paresthesia, etc...Anybody else with ependymal cyst out there??

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 14, 2020
In reply to @mjp "I was told my cyst is actually an ependymal cyst at my last follow up with..." + (show)
@mjp

I was told my cyst is actually an ependymal cyst at my last follow up with CT scan in June, which showed a subacute subdural hematoma and the cyst has shrunken to half its original size. I was supposed to have another follow up mid September to keep an eye on the hematoma but imaging Dept never got the requisition and there are delays backlog due to Covid...not sure when this will be now. I still have symptoms, headaches, memory and concentration issues, paresthesia, etc...Anybody else with ependymal cyst out there??

Jump to this post

@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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