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 2.1×1.6×1.6 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.

Hi Kellyo,

I was diagnosed with a Pineal Cyst. Many of my symptoms are the same as yours. I was told by my neurosugeon that the cyst (13mm x 8 mm) was begnine and not the cause of my symptoms. I disagree because I live with the symptoms and they are real. I’ve had so many other tests that there is no other possible reason. The space in our head is priime real estate and there is no room for anything extra up there!. Even a small cyst takes up space and causes pressure. The pressure mine causes does not show as hydrocephaly on the MRI. But it gives me symtoms. I have constant tinitis, often pulsatile when I do anything that causes exertion. Driving a car brings on episodes of increased diziness, as well a sessions at the computer. I even get diziness walking. Mild enough that I don’t fall down, but it’s there. What’s really depressing is my lack of energy. I get fatigued very easily, and feel best when I can take on tasks at my own speed. This does not work well for my employer!

I’m still in the process of investigating treatment options. I have read blogs where people with cysts had them removed and the sysmptoms dissappeared. I’m hoping there is an easy fix.

I appreciate any insights to cysts in the noggin!

Jeep

REPLY

Hi Kellyo, your situation sounds very familiar to what I am experiencing, 39 years old from Ontario, the onset of symtoms after an epidural. It seems you have done a lot of research as have I. It would be nice to compare notes.
Thanks, Andyo

REPLY
@andyo

Hi Kellyo, your situation sounds very familiar to what I am experiencing, 39 years old from Ontario, the onset of symtoms after an epidural. It seems you have done a lot of research as have I. It would be nice to compare notes.
Thanks, Andyo

Jump to this post

Hi Andyo. My symptoms have changed a little bit, but the significant symptoms (fatigue, headaches) have remained the same. Why don’t you inbox me and bring me up to speed on what your wife is going through and we can compare notes.

Thx 🙂
Kelly

REPLY
@jeep

Hi Kellyo,

I was diagnosed with a Pineal Cyst. Many of my symptoms are the same as yours. I was told by my neurosugeon that the cyst (13mm x 8 mm) was begnine and not the cause of my symptoms. I disagree because I live with the symptoms and they are real. I’ve had so many other tests that there is no other possible reason. The space in our head is priime real estate and there is no room for anything extra up there!. Even a small cyst takes up space and causes pressure. The pressure mine causes does not show as hydrocephaly on the MRI. But it gives me symtoms. I have constant tinitis, often pulsatile when I do anything that causes exertion. Driving a car brings on episodes of increased diziness, as well a sessions at the computer. I even get diziness walking. Mild enough that I don’t fall down, but it’s there. What’s really depressing is my lack of energy. I get fatigued very easily, and feel best when I can take on tasks at my own speed. This does not work well for my employer!

I’m still in the process of investigating treatment options. I have read blogs where people with cysts had them removed and the sysmptoms dissappeared. I’m hoping there is an easy fix.

I appreciate any insights to cysts in the noggin!

Jeep

Jump to this post

Hi jeep. Yes your symptoms sound similar to mine. Your cyst is much larger than mine though and i am surprised your NS is not suggesting treatment.

I realize that you posted here back in August, however I don’t think I replied to you. I apologize for that.

Anything new?

REPLY

Hi Kellyo .. just new on here and saw your post and wondering if you have gotten any further in the medical field with your symptoms within our health care system. I live in Ontario as well. I had a bad fall just over six months ago with a concussion. I have had symptoms since which the doctor has diagnosed as post concussion syndrome. A 3 cm arachnoid cyst was found through an MRI but doctor says it is incidental and asymptomatic. I have had so much nausea and headaches the past few months. I do get a lot of sinus headaches but this is not that. I did have a few tremors in the spring but they have subsided. I don’t want to automatically assume it is the cyst but I don’t want to exclude it either. The doctor said it was likely there from birth but I also read they can come from head trauma as well. I find it hard to get much info on line about them.

REPLY

Hi Kellyo,

I came across your story and wanted, like most people here, to follow up and see how things are? Did you ever get any treatment? What has your neurologist recommended?

I am currently 25 but when I was 23 I was diagnosed with an arachnoid cyst in my upper neck. I had similar symtpoms as tingling in my arm and leg on the left side. Saw a neurosurgeon but felt that he just automatically wanted to cut me open even though it wasn’t effecting my activities of daily living.

Any input from you would be helpful! I’ve been told these are rare so it’s helpful to see we’re not the only ones out there with these types of cysts! Thanks!

Kah

REPLY
@kah0223

Hi Kellyo,

I came across your story and wanted, like most people here, to follow up and see how things are? Did you ever get any treatment? What has your neurologist recommended?

I am currently 25 but when I was 23 I was diagnosed with an arachnoid cyst in my upper neck. I had similar symtpoms as tingling in my arm and leg on the left side. Saw a neurosurgeon but felt that he just automatically wanted to cut me open even though it wasn’t effecting my activities of daily living.

Any input from you would be helpful! I’ve been told these are rare so it’s helpful to see we’re not the only ones out there with these types of cysts! Thanks!

Kah

Jump to this post

Hi there, I have not had follow up in a couple of years on mine. I got a couple of opinions from neurosurgeons and no one seemed to think it was a big deal.

My symptoms seem to have declined and now I struggle with very low blood pressure. I have no idea why and the dr doesn\’t either. But no one has mentioned the cyst since.

I gave up trying to convince ppl that my cyst was giving me symptoms when every neurologist I saw told me these kinds of cysts don\’t cause symptoms. No one ever offered surgery to me.

Kelly

REPLY

My MRI showed an arachnoid cyst that is 7 cm x 3.5 cm x 3.5 cm. I have headaches, dizziness, loss of balance, blurred vision, and numbness in my arms when I sleep. A neurosurgeon just told my doctor that no treatment was necessary. So we are getting a 2nd opinion. I am a 51 year old male. and have symptoms for 6 months. Can anyone advise me on this?

REPLY

How are you doing, Brian? I am 48-year-old male. This year, I had an MRI that showed a large sub-arachnoid cyst. I didn’t have your range of symptoms. But I had continuing headaches, and severe short-term memory loss. The neurologist told me that no treatment was necessary. My wife couldn’t believe it, and we immediately sought a second opinion. The next doctor sent me for memory evaluation with the Weschler tests, and it turned out I was far, far below the average score. The doctor recommended surgery with endoscope through a small incision on top of my forehead. In the four to five-hour procedure, they cut a hole in the wall of the cyst (“fenestration”) to allow the accumulated cerebral-spinal fluid to disperse, and reduce pressure. About a week post-surgery, the memory tests were repeated, and the memory disability had vanished. My scores were now well above average. Six weeks post-surgery, I feel largely over the problem.
My basic online reading tells me that subarachnoid cysts may be left untreated if they are asymptomatic. Since I was lucid, and not suffering a range of symptoms like you, I guess the first doctor thought I would be OK. That was a pretty bad mistake. I was explained by the second neurologist that my cyst position (“velum interpositum”) was unusual, and it was directly bearing on the fornix (which is part of the memory-creation apparatus). Without intervention, I was at risk at permanent neurological damage.
I hope this helps you, or others in this situation.
David

REPLY

Hello @kyoto,

Welcome, and thank you so much for sharing your story. I’m so glad that a second opinion could ensure you are following the best route toward better health. And I’m certain @cableblb and others in this discussion appreciate your insight.
Kyoto, we look forward to getting to know you better; let us know how the Connect community can help.

REPLY

Hello Kanaaz,
Thank for your kind response. Well, I developed this neurological condition gradually, and I didn’t have insight into my loss of memory, that everyone around me could notice even after it had become quite advanced.
Now, I pay more attention to what my body tells me. Recently, pressure headaches similar to those preï½°diagnosis have become apparent to me over the past month. My surgeon doesn’t see any particular problem, and I’ll have a followï½°up MRI in six months.
I would be really interested in hearing about anyone’s postï½°surgery course.
David

REPLY

Hi @kyoto,

I’d like to invite @kstream and @bostonsanfran to join this discussion, as they have some experience with arachnoid cysts. You might also be interested in checking out these past discussions regarding the same:

– https://connect.mayoclinic.org/discussion/no-where-to-turn-for-answers-this-is-the-story-of-my/ (some good resources in this discussion)
– https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

REPLY
Please sign in or register to post a reply.
  Request Appointment