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Arachnoid Cyst
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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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
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/
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
@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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1 ReactionOver 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
Hi all I'm new to this I'm a 36 year old male and have been diagnosed with an arachnoid cyst I'm experiencing eye problems,severe diziness and have a bilateral tremor in my hands but I'm told these are nit the symptoms of a cyst, I'm really confused by this has after going to my gp about 20 times I was relieved when thought id found the problem but now I feel like I'm back to square one its really devastating my life and would be so so grateful of any help thankyou
Hi @gingerbread14, 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 and @ledgerwp.
If not related to your diagnosis of arachnoid cyst, did your GP suggest what might be causing the symptoms of severe dizziness, bilateral tremor in your hands and eye problems? Might these be related to medication you're taking? Have you considered seeing a specialist/neurologist?
Has anyone had a doctor manipulate dye into your brain cyst for your CT Scan? If so please tell me what happened. The large cyst is on the right side and as big as a grapefruit. Had surgery to remove it and it grew back the same size but not growing larger. Thank you for any advice on the arachnoid cyst treatments and testing.
Welcome to Connect, @husbandandwife. I moved your message to this existing discussion group about arachnoid cysts so that you can meet other members like @gingerbread14 who also just joined Connect a few days ago.
Husbandandwife, can you tell us more about the "doctor manipulating dye into your brain cyst for the CT scan"? How was the dye "manipulated"?
Hi all,
You may 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/