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.

lvulcano | @lvulcano | Dec 9, 2023

I am on several tarlov cysts support groups through facebook. It is easy to join and it is great to hear from other people. Lots of good information is shared and you don’t feel so alone. I pray you can find answers. 🙏

huskytantrum | @huskytantrum | Sep 16, 2024

Hi everyone, I'm writing from Ontario Canada. I've been experiencing many different neurological symptoms, some lifelong. Others, such as vertigo, poor memory and attention, poor word recall, photosensitivity, motor skills difficulties, balance issues, stiff and painful neck, difficulty speaking and swallowing are more recent, and some of these are episodic. I've had daily headaches throughout my 43 years, migraines, icepick and cluster headaches, and vision disturbances among other symptoms.

In Jan 2024 I went to ER for stroke-like symptoms and intense head pain, and my CT scan showed a 4.4 cm cyst, left posterior retrocerebellar. This has been dismissed by all the practitioners I've seen aside from my wonderful GP and mental health providers. Neurologist diagnosed me with functional neurologic syndrome with essential tremors and functional seizures, and refused followup aside from neuropsych referral. I've been in therapy since childhood and was a pretty happy mental health clinician before my symptoms prevented me from working, so I believe the cause may not be only psychological. I have previous diagnoses of ME/CFS and CPTSD, and neurodivergent traits.

I'm wondering if anyone else has had a similar experience (especially around the comorbid diagnoses) or any recommendations for navigating a deteriorating health system. Although I am happy to meet the neuropsych I'll be asking for a second opinion for neurology/neurosurgery, but am told the wait time for initial intake/assessment is 2 years. I'm very interested to learn about others' experiences with surgery for this condition and reading all the contributions here has been so helpful. Courage to you all, and take care!

huskytantrum | @huskytantrum | Sep 16, 2024

In reply to @myersmom13 "@myers713 is my daughter. We are desperate for help. Any advice or options would mean the..." + (show)

Reading your comments, I'm wondering how you and your daughter are doing now? Are you still looking for answers, and have you looked outside of Nova Scotia? (I used to live in Halifax and I love & miss it so much!) Hope you are both managing as well as can be.

twiztedbutterfly1980 | @twiztedbutterfly1980 | Mar 7 9:22pm

In reply to @beewl "Hi Brian & everyone on here, I’ve a large 10x3x4 arachnoid cyst and a 1.5x1cm pineal...." + (show)

I had a crano surgery in 2023. 7.6cm. I've faught 7 years for help since discovery at 2cm. The pressure was too much and the doctor had to close up. Surgery not only failed but made worse. I'm worse now than before. Last scan showed 8cm. 2 month post op already growing. I can feel the hole still from the surgery. I've been placed on hospice now and do feel my time is near this time. Not my first time doctor giving timeliness of expectations. My body gave it to it accepted it. Spend most if days staring at ceiling from my hospital bed. Hospice about comfort and I'm truly blessed have them they are good to me. Reality is no such thing as pain free or anxiety free it's accepting what's tolerable. Other than sedation not ready for that even tho life is hard. Mine is mostly right side but recently has grown to the left. Strange how I can actually feel it. Especially like bending which I know is a no no but I want some independents hard ask for help every single time. My wish is that doctors take these cyst more seriously and act sooner than later. Stop the gaslighting and blame game of something anything but the cyst kinda problem when you know without that cyst you wouldn't have issues. Best of luck to you and all us cysters

beesign | @beesign | Apr 23 5:00pm

Hello to everyone here. I have a long history of a arachnoid cyst. A few years ago I noticed difficulty in feeling well and some balance issues. In march of 2025 my PCP advices me to get a new mri scan. So the results shows a large cyst. Now only several days after the scan my sever headaches started. I’ve never had headaches like this. I’m under Dr orders to stay inside as much as possible until I can see a neurologist very soon. Anyone want to share with me some experience or knowledge?

mileisy | @mileisy | Apr 24 8:04pm

In reply to @huskytantrum "Hi everyone, I'm writing from Ontario Canada. I've been experiencing many different neurological symptoms, some lifelong...." + (show)

Hi! I’m so shocked that I found this thread and then I see that there are people out there with similar symptoms as me! I was told by my neurologist that my arachnoid cyst would not cause most of my symptoms, but we share the same exact symptoms. I’m going to keep reading and will reply later with my details.

katcow | @katcow | Apr 25 7:53pm

I don’t have a cyst but I do have arachnoiditis caused by epidural injection. The nerves in my low back are stuck together and stuck to the side of my spine which causes symptoms as if there is a cyst. No cure mine is called adhesive arachnoiditis

bolake | @bolake | Apr 26 7:43am

In reply to @katcow "I don’t have a cyst but I do have arachnoiditis caused by epidural injection. The nerves..." + (show)

I too have Adhesive Arachnoiditis of L4 L5 nerve roots. All signs point to epidural injections, having had no surgery in lumbar area. Have always been active, jogging 20 years back , then walking couple miles 3 or so times weekly. Have been doing nerve glide stretches along with gabapentin and diclofenac. I have been doing ok so far when up and moving with back of thigh and some right hip discomfort. Worse is at night sleeping waking sometimes with legs burn and stinging. Usually can get up and move around, stretch and get it settled back down. What kind of routine, medication do you fine helps??