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.

Thank you! All I know is that the dr will manipulate the dye into the cyst...move it into certain places in the cyst is my understanding. It's similar I guess to draining the shunt which caused mood swings and confusion. Anyone else experience this?

REPLY

Hi. My name is mango. I had an arachnoid cyst in my head since I was 12 yrs old. Now I am 29 but recently I have headache, feeling dizzy. But i don’t have the epilepsy and eye problems. So I went to the doctor office he says that the headache could be another reason. He say that if I don’t have running nose which is ok. And it’s no need to do MRI..before I took ct in China. He doesn’t recommend me to do the surgery, but i dont believe him because in China had 3 doctor said that I need to do the surgery. Now i don’t know how to do. Does somebody have the same problem?

REPLY

Hello everyone, I am reaching out to see if any other adults may have similar issues that I am facing. I am 33 years old and fell 14 feet three years ago, where i cracked my head on concrete. I started having headaches and a MRI scan showed a 5x4x4 cm cyst. It was thought to be arachnoid. After 2 years the headaches finally went away, but recently they headaches have gotten much worse, having eye twitches, feeling of fluid in my ear, and numbness. I went to the ER and they did another MRI and said that the cyst has grown to 6x5x5 cm and now have thinning of the Corpus Callosum and low lying tonsils. Does anyone else have any experience similar to this?

REPLY
@matthewlucas052513

Hello everyone, I am reaching out to see if any other adults may have similar issues that I am facing. I am 33 years old and fell 14 feet three years ago, where i cracked my head on concrete. I started having headaches and a MRI scan showed a 5x4x4 cm cyst. It was thought to be arachnoid. After 2 years the headaches finally went away, but recently they headaches have gotten much worse, having eye twitches, feeling of fluid in my ear, and numbness. I went to the ER and they did another MRI and said that the cyst has grown to 6x5x5 cm and now have thinning of the Corpus Callosum and low lying tonsils. Does anyone else have any experience similar to this?

Jump to this post

Hi @matthewlucas052513, welcome to Connect. I moved your message to an existing discussion about arachnoid cysts so that you can meet other members like @kyoto @dizel10 @Tbato622 @jlfisher56 @jeannels @mango @husbandandwife and @ledgerwp.

You might also be interested in this discussion:
– I am desperate to find a dr who treats arachnoiditis. https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

Matthew, what treatment options or plan has been recommended for you?

REPLY

Hi All , V here from Ontario, Age 31, Male. Just got diagnosed yesterday with the arachnoid cyst. I am a healthcare professional and believe in medical science. I also belive that if something is not broken then don't try to fix it. The report of CT says "an incidental small left middle cranial fossa arachnoid cyst
Measuring approximately 3.5 x 1.5 x 1.8 cm. There is mild remodeling/thinning of the anterior wall the left middle cranial fossa. The ventricles and cisternal spaces otherwise appear normal. No intracranial hemorrhage."

Seen 2 GPS they said its nothing to worry about. Remodeling suggests that its been there from long time and pressing against the bone wall. From last few years been experiencing tiredness and sleepy feeling whole day. Severe back pain ( had L5-S1 back surgery), thoracic pain on the left side at T5 level. Feeling general back weakness. I episode of pulsating feeling in the head when I was extremely angry. Did some research, most people report a headache. I started experiencing it after diagnosis. Could be psychological. Dr. is referring me to the neurologist.
The whole thing is stressing me and my family out. I am postponing my business decisions. I don’t have kids yet but that as well we have to figure it out soon. In the middle of moving to Edmonton. But now I am asking myself what is the meaning of life and taking this much stress. Should I adopt laid-back lifestyle instead of worrying about life?
I just want to know from all the cyst patient that how they are doing now. They say if it is asymptomatic you don’t need to do anything. Anyone here 50+ who had cyst from a long time and doing fine? Anyone who had it from long time and it became symptomatic?

REPLY
@viralpromotional

Hi All , V here from Ontario, Age 31, Male. Just got diagnosed yesterday with the arachnoid cyst. I am a healthcare professional and believe in medical science. I also belive that if something is not broken then don't try to fix it. The report of CT says "an incidental small left middle cranial fossa arachnoid cyst
Measuring approximately 3.5 x 1.5 x 1.8 cm. There is mild remodeling/thinning of the anterior wall the left middle cranial fossa. The ventricles and cisternal spaces otherwise appear normal. No intracranial hemorrhage."

Seen 2 GPS they said its nothing to worry about. Remodeling suggests that its been there from long time and pressing against the bone wall. From last few years been experiencing tiredness and sleepy feeling whole day. Severe back pain ( had L5-S1 back surgery), thoracic pain on the left side at T5 level. Feeling general back weakness. I episode of pulsating feeling in the head when I was extremely angry. Did some research, most people report a headache. I started experiencing it after diagnosis. Could be psychological. Dr. is referring me to the neurologist.
The whole thing is stressing me and my family out. I am postponing my business decisions. I don’t have kids yet but that as well we have to figure it out soon. In the middle of moving to Edmonton. But now I am asking myself what is the meaning of life and taking this much stress. Should I adopt laid-back lifestyle instead of worrying about life?
I just want to know from all the cyst patient that how they are doing now. They say if it is asymptomatic you don’t need to do anything. Anyone here 50+ who had cyst from a long time and doing fine? Anyone who had it from long time and it became symptomatic?

Jump to this post

Welcome to Connect, @viralpromotional.
Sounds like you're getting your questions ready for when you see the neurologist, like are the symptoms related to the cyst. You're quite right that if asymptomatic, the recommendation is usually watchful surveillance and no treatment. If needing treatment, it might be good to find out about the availability of endoscopic approaches in Ontario before moving to another province. Will you be seeing a neurologist in Ontario before moving?

REPLY

Hi there. I was diagnosed with a very large posterior fossa arachnoid cyst. 12 cm and stable--it's been reviewed over 4 years with no change. I have severe migraines from time to time, hemiplegic and sometimes associated with days of confusion and "cloudiness." Given the position and the large size of the cyst, I am trying to determine if a pregnancy would present any additional risks of hemorrhage or issues with CSF pressure, flow, etc. Any actual medical research would be beneficial. My neurosurgeon ordered an MRI for CSF flow, and my insurance denied the claim as "medically unnecessary". I'm just trying to weigh the risk of pregnancy given this "huge" cyst (that's how it's classified). I am seeking more research to back up this type of test--my neurologist, women's health NP and neurosurgeon all agreed this was the next step to determining whether or not there would be any additional risk during pregnancy, so I'm surprised the insurance has denied this. Help?

REPLY

Hello, @colebernard, and welcome to Mayo Clinic Connect. Very good to hear that your arachnoid cyst has been stable for 4 years now.

Sounds like you are being wise to research pregnancy and your condition. How frustrating that your insurance is classifying the MRI to assess CSF flow ordered by your neurosurgeon as medically unnecessary.

I'd like to introduce you to some members who posted here on this thread or in other discussions about arachnoid cysts, like @viralpromotional @husbandandwife @kyoto @jlfisher56 @bostonsanfran. I'd also like you to meet @dawn_giacabazi. Hoping they may have some insights on potential pregnancy with an arachnoid cyst such as yours as well as any pertinent research.

In addition to seeking more research on the topic, are you considering the possibility of an appeal related to coverage of this MRI?

REPLY
@viralpromotional

Hi All , V here from Ontario, Age 31, Male. Just got diagnosed yesterday with the arachnoid cyst. I am a healthcare professional and believe in medical science. I also belive that if something is not broken then don't try to fix it. The report of CT says "an incidental small left middle cranial fossa arachnoid cyst
Measuring approximately 3.5 x 1.5 x 1.8 cm. There is mild remodeling/thinning of the anterior wall the left middle cranial fossa. The ventricles and cisternal spaces otherwise appear normal. No intracranial hemorrhage."

Seen 2 GPS they said its nothing to worry about. Remodeling suggests that its been there from long time and pressing against the bone wall. From last few years been experiencing tiredness and sleepy feeling whole day. Severe back pain ( had L5-S1 back surgery), thoracic pain on the left side at T5 level. Feeling general back weakness. I episode of pulsating feeling in the head when I was extremely angry. Did some research, most people report a headache. I started experiencing it after diagnosis. Could be psychological. Dr. is referring me to the neurologist.
The whole thing is stressing me and my family out. I am postponing my business decisions. I don’t have kids yet but that as well we have to figure it out soon. In the middle of moving to Edmonton. But now I am asking myself what is the meaning of life and taking this much stress. Should I adopt laid-back lifestyle instead of worrying about life?
I just want to know from all the cyst patient that how they are doing now. They say if it is asymptomatic you don’t need to do anything. Anyone here 50+ who had cyst from a long time and doing fine? Anyone who had it from long time and it became symptomatic?

Jump to this post

Moving is cancelled because of cyst ...I thought why I am taking stress instead of focusing on the health...? Seen neurologist ..he even neglected the idea that cyst might be causing issues. He said it is just incidental...end of discussion ..let's talk about any other neurological symptoms you have ...

REPLY
@viralpromotional

Hi All , V here from Ontario, Age 31, Male. Just got diagnosed yesterday with the arachnoid cyst. I am a healthcare professional and believe in medical science. I also belive that if something is not broken then don't try to fix it. The report of CT says "an incidental small left middle cranial fossa arachnoid cyst
Measuring approximately 3.5 x 1.5 x 1.8 cm. There is mild remodeling/thinning of the anterior wall the left middle cranial fossa. The ventricles and cisternal spaces otherwise appear normal. No intracranial hemorrhage."

Seen 2 GPS they said its nothing to worry about. Remodeling suggests that its been there from long time and pressing against the bone wall. From last few years been experiencing tiredness and sleepy feeling whole day. Severe back pain ( had L5-S1 back surgery), thoracic pain on the left side at T5 level. Feeling general back weakness. I episode of pulsating feeling in the head when I was extremely angry. Did some research, most people report a headache. I started experiencing it after diagnosis. Could be psychological. Dr. is referring me to the neurologist.
The whole thing is stressing me and my family out. I am postponing my business decisions. I don’t have kids yet but that as well we have to figure it out soon. In the middle of moving to Edmonton. But now I am asking myself what is the meaning of life and taking this much stress. Should I adopt laid-back lifestyle instead of worrying about life?
I just want to know from all the cyst patient that how they are doing now. They say if it is asymptomatic you don’t need to do anything. Anyone here 50+ who had cyst from a long time and doing fine? Anyone who had it from long time and it became symptomatic?

Jump to this post

And what are his thoughts about the other neurological symptoms? What’s next?

REPLY
Please sign in or register to post a reply.