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Kellyo
@kellyo

Posts: 6
Joined: Jul 22, 2011

Arachnoid Cyst

Posted by @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.

Reply


Jeep
@jeep

Posts: 3
Joined: Aug 18, 2011
Posted by @jeep, Aug 18, 2011

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


Kellyo
@kellyo

Posts: 6
Joined: Jul 22, 2011
Posted by @kellyo, May 11, 2012

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?


andyo
@andyo

Posts: 3
Joined: May 10, 2012
Posted by @andyo, May 10, 2012

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


Kellyo
@kellyo

Posts: 6
Joined: Jul 22, 2011
Posted by @kellyo, May 11, 2012

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


SheilaC
@sheilal

Posts: 1
Joined: Oct 06, 2014
Posted by @sheilal, Oct 6, 2014

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.


kah0223
@kah0223

Posts: 1
Joined: Jan 12, 2015
Posted by @kah0223, Jan 12, 2015

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


Kellyo
@kellyo

Posts: 6
Joined: Jul 22, 2011
Posted by @kellyo, Jan 12, 2015

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


Brian Todd
@cableblb

Posts: 1
Joined: Sep 11, 2015
Posted by @cableblb, Sep 10, 2015

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?


kyoto
@kyoto

Posts: 4
Joined: Aug 26, 2017
Posted by @kyoto, Fri, Aug 25 10:05pm

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

Posted by @kanaazpereira, Sat, Aug 26 12:21am

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.


kyoto
@kyoto

Posts: 4
Joined: Aug 26, 2017
Posted by @kyoto, Sat, Aug 26 1:54am

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 preーdiagnosis have become apparent to me over the past month. My surgeon doesn’t see any particular problem, and I’ll have a followーup MRI in six months.
I would be really interested in hearing about anyone’s postーsurgery course.
David

Posted by @kanaazpereira, Sun, Aug 27 10:35am

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/


kyoto
@kyoto

Posts: 4
Joined: Aug 26, 2017
Posted by @kyoto, Tue, Sep 12 4:25am

Over the last week, I have a reoccurrence of confusion, and forgetfulness. I returned to my surgeon today, who ordered a CT scan. The original cyst has shrunk, he said, but the ventricle is beginning to expand again with cerebral spinal fluid. He invited me to return to speak to him, if symptoms persist.
Basically, he expected that the arachnoid cyst fenestration would most probably resolve the memory loss problems, I had experienced. Today, he seemed quite shocked that these symptoms have returned.
My question is, how many people experience a reoccurrence of subarachnoid symptoms after surgery.
Thank you,
David


dizel10
@dizel10

Posts: 1
Joined: Sep 07, 2017
Posted by @dizel10, Thu, Sep 7 3:30pm

We live in Ontario too..my mom who is 59, started to develop symptoms 14 months ago, of dizziness, headaches she was told vertigo. 6 months after her symptoms were alot worst, dizziness, head pain (not headache…pain she says like stabbing) pressure, balance way off, nausea. She requested a MRI at the time her doctor told her the are multiple tiny cyst in the brain nothing to worry about. That she had a very bad case of vertigo said the first neurologist. Three more months past, the 2nd neurologist said, she had a inner ear infection that is causing the vertigo, sent her for therapy….which would make her head hurt more…So I asked my mom to come stay with me in Toronto brought her to a neurologist here who did another MRI (8 month follow up) so now we are in month 14 since her symptoms started….and to add to the symptoms is…her balance is off, she can hardly walk without help as she is loosing her vision, has consent pressure in her head (like something is being pressed on), loosing her memory, if you look up symptoms she has all of them but a seizure.
Now the 3rd neurologist told her he believes she has fibromyalgia…..and put her on medication for that and said it takes a few weeks to start working, she told them she disagrees and can’t understand why nobody believes these cyst causes symtpoms, she agreed to start the medication as she is wants to prove it won’t help….after we started researching and found that many people across the world are experiencing the same symptoms and lack of medical care.
My mom had open head surgery at the ages of six to remove a blood clot the size of a orange, she has clips in her head….she even said nobody would beg to have their head cut open or have needles in to drain them or remove them….especially someone who has already had brain surgery and knows the recovery…..why can’t somebody help her….and all you off suffering.
I am so disgusted with the medical system…and i even work in the hospital of the neurologist telling her it’s fibromyalgia..
My mom has lost 14 months of her life because she can only lay down, needs help walking, showering ect…..she is missing time with her family, birthdays, Christmas,, graduations ect…
I am just watching my mom disappear…..
How can we get help……and I am loosing sleep, I just want to help her and fix her, I want my mom back, my kids want their grandma back and I want her to feel normal again, happy and active, not like she is dying. Life is so short and she lost 14 months….gown much is she going to loose before somebody will help


kyoto
@kyoto

Posts: 4
Joined: Aug 26, 2017
Posted by @kyoto, Fri, Sep 8 3:57am

@dizel10, what you describe is reminiscent of what I experienced. My MRI was followed up with a CT scan as well. But the clincher was, in my case, the Weschler memory tests. My cyst was directly impinging on the fornix, and my memory capacity had over time, subtly, but drastically, gone down. My delayed recall test score and so on was awful. It may be that in your mother’s case, another brain function is impaired. I urge you to persevere in getting to the bottom of this. There’s an answer, at least, to the discomfort, if not the therapy.

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