Arachnoid Cyst

Hi,
I started having very similar symptoms in the fall of 2021. CT and MRI said I had a cyst on the thalamus, about an inch all around. At the time, the neurosurgeon said it wasn’t causing the issues. I spent almost a year doing test after test with different specialists, including a psychiatrist and cognitive therapist. One neurologist decided it was psychosomatic and that I purposely failed the auditory instructions section of the memory test. I spoke to my primary about getting a second opinion and she shut me down, telling me to trust the doctor. I felt so hopeless at this reaction. My psychiatrist knew all of that was BS and had me switch to and Integrative Medicine Practice and new neurologist. My new primary had me work on life style changes to help manage the symptoms but worked with my new neurologist to find solutions. Extensive bloodwork showed weird numbers that are often caused by misfire of brain communication. My current neurologist was stumped by the original Neurosurgeon’s findings and referred me to a new one. The new one dug down into my fist and second MRI ( which showed no growth) and he decided the cyst was big enough to cause my symptoms. He diagnosed it as a Obstructive Hydrocephalus cyst. He was angry at that first surgeon about it too. Well, he is older and doesn’t do brain surgery anymore, but he referred me to another neurosurgeon who had experience with these cysts.
And… the third neurosurgeon isn’t allowed to take me on as a patient, because he works for the same hospital as the first one who said it wasn’t causing issues. And the hospital has a strict policy of not changing physicians…
So the hospital made me see the original neurosurgeon, who, surprise! said it wasn’t causing the issue and flat out ignored my wife and I when we discussed the previous diagnosis. She saw me less than 15 mins and barely looked at my scans. Wouldn’t look at any of the extensive blood work and notes showing my symptoms were being caused by something in the brain. And told me “you’re just part of that 5-20% of patients that Medicine can’t help”.
So I let the previous neurosurgeon know what happened. He suggested going to Mayo, so now I’m on a waiting list and am scared I’m going to go to all this effort to be told it’s psychosomatic again.
I, like all of you, want my life back. I had to quit my almost 10 year teaching career, because of the symptoms. I got a new job as a teaching coach and they were fine with accommodating my symptoms. I strived in this job even though my symptoms were getting worse. I was having to go to more and more appointments. And then the new boss over the whole organization decided “Doctor’s appointments are still absences, so we’re letting you go”.
I’m tired of not being able to do simple tasks without feeling like hell. I’m missing out on all the things I loved doing. My wife has been my savior in everything and I’d be lost without her love and support. But I don’t want to put her or our 5 year old through this.

Hi there Everyone.... My daughter whom is almost 30 here in Victoria, Australia with a baby and a 3 year old. Is being referred to a Neuro Surgeon . Her cysts are doubling in size every few years. now sitting at 15 x 11 x 13 mm
She has dizzy spells , black outs, terrible headaches and is very afraid of what is to come .... especially now she is a mum. I would be ever so grateful for any feedback and if someone is in Victoria, whom they used as their Neuro Surgeon. What happens if they do not remove and it just keeps getting bigger. Can they rupture and cause more damage, can they become milignant ... Take care everyone.

Thankyou for your information, my daughter here in Australia is almost 30 and has had a cyst growing for many years near her Spinal Cord at the bottom of her brain, The surgeon said yesterday that they will have to remove it at some stage as it keep growing and eventually it will stop the spinal fluid to her brain. May i ask if this sounds similar to your's as they have to enter the same way for surgery. She is having memory loss but wondering if you might have something extra to watch out for as she has a 3 year old and 9 month old and is quiet scared to have it done now, plus surgeon said it can wait a while longer as there is room in that area for it to grow. Did you get tingling or black out's etc. Just so she knows maybe signs in the future in herself even though she is going every 12 months now for check ups

Hello,
Thank you for your message. I am sorry to hear that your daughter is facing this issue, and that it is causing anxiety. This happened to my when my kids were 4, 7 and 10. In my understanding, hydrocephalus is a condition where spinal fluid can accumulate in the brain. It seems that this may sometimes not be an emergency. This was the initial advice which I received from a doctor, even after having an MRI. However, at that time, in addition to headaches, I also had really bad loss of ability to create memories and recall them. A second consultant who my wife immediately consulted recommended the keyhole surgery. The reason for this in my case was that a cyst filled with spinal fluid had formed right into the middle of my brain adjoining the hippocampus which is where memory formation occurs. Part of the diagnosis was a memory test called the Weschler, which involves repeating stories and numbers read out to you. My score was awful. So I had the operation, from which I recovered very quickly (although brain surgery is really scary beforehand). And a couple of days after, I was given the same memory test again and there was a very large improvement.
However, a complication came up. Over time, my memory problems re-appeared. It turned out that due to the damage caused by this cyst (in the middle of my brain) before it was removed, a condition called epileptic amnesia had developed. With this, epileptic fits occur only within the brain (not the body), and they are almost completely unconscious. This form of epilepsy doesn't affect driving or work, but I do have to permanently take epilepsy medication. As far as I know, this was not connected to the surgery itself but to the original cyst. Apparently, this form of epilepsy can be a complication of brain conditions like this. Fortunately, it is pretty manageable. As you mentioned that your daughter has some memory problems, if this doesn't disappear with the surgical treatment, what I described is one possibility. I am sure the doctors over there would be onto it.
If you would like to ask me any more questions, please do. My name is David and I live in Kyoto, Japan. Best wishes.

Oh my goodness thankyou ever so much for taking the time to reply and details. My daughter and hubby love Japan and went their for the honeymoon 🙂 I am glad to hear you have some effective treatment. I am guessing that with her's at the bottom of her brain that is the reason he says there is more room for it to grow in comparison to you situation and cause/effect. She was terribly afraid of this surgery given she has such tiny children which is totally understandable and she did notice he changed the way he was speaking when he became aware she was welling up with tears. My friend had spinal fluid leak at the top of her neck and was in hospital for a couple of months on her back until it healed, lots of medication but at least they are onto it early for my daughter. Wishin you all the very best and thankyou again

You're welcome. This site is so useful to gain understanding of similar conditions, which just almost never come up in ordinary conversations.
I completely understand your daughter's fear during the consultation. My doctor started saying "tumour" before the surgery. It turned out that a "tumour" doesn't have to be cancer. Maybe in their world, it is taken for granted but you would think they would be a bit more careful with their interaction with patients. But please be reassured by my experience. The surgery was very successful, and you can barely see the scar on my forehead where the camera went in. In my case the procedure was called "fenestration". This means cutting a little hole in the wall of the cyst and the cerebral fluid just flows out. Then they stitch up and it's over.
It's very nice to interact with you about this issue. I am leaving Japan tomorrow for the first time in four years. I have a business trip to Toowoomba in Queensland. Have you ever been there?
David

Just asking
Have a sub arachnoid cyst right lobe Was offered surgery declined due to a Professor of Neurosurgery privately paid said he wouldn't touch it due to location I would basically lose the essence of who I am! A younger surgeon was willing to undertake operation even though Cyst was more difficult to do . Declined, however since age of 40 brain atrophy occurred 50yr cerebrovascular disease at 53 servere cerebrovascular disease at 55 differant issues I'm back at Neurosurgeon. Just wondering if having such cysts have caused the deterioration of brain atrophy & cerebrovascular disease

Hi @em87 thank you for the info! What is the contact info of your doctor? I have an arachnoid cyst that’s 44 mm on my cerebellum. I have vertigo, dizziness, major, headaches, terrible word recall, ringing and popping in my ears, bad vision in my left eye & I’m quite lethargic. I went to a neurosurgeon, where I live in Las Vegas and he’s only performed arachnoid surgery 4 times in the past 30 years. It seems like he doesn’t really believe in it. He said that I’m fine and don’t need surgery because he doesn’t think my symptoms are coming from the cyst. I’ve already ruled out every other option though and want to meet with a doctor that performs the surgery.

Hi, I’m 22 years old and from Nova Scotia, Canada.

Mid-September 2022, I got hit in the head with a sports ball while at work. I also have a history of multiple concussions. However, following this hit I begun to have daily migraines and was hit with extreme fatigue.

October 4th, 2022 was when I started to become worried about my symptoms and went to the ER for the first time. I had begun experiencing facial drooping, photosensitivity, and uncontrollable twitching of my right eye. A CT scan was performed to rule out a stroke and I was given pain meds.

The CT scan ruled out a stroke, therefore I thought the scan came back completely normal.

A few days later, I begun to have bouts of seizure-like activity (eyes would roll upwards and extreme pain was felt around my right eye), alongside muscle spasms and back and neck pain. In addition to these symptoms, it felt like I had a raging sinus infection - increased pressure in head, ear (felt full of fluid or clogged), and increased tension in my jaw on the right side.

Another trip to the ER resulted in a diagnosis of psychogenic seizures. This discovery was made after the doctor went over my list of medications, one in particular that I take to help manage PTSD.

I was prescribed Propranolol to prevent migraines and help with heart palpitations. However, my symptoms continued to progress.

Over the next couple of months, I begun to experience numbing and tingling sensations in my right arm and leg - it become so bad that the right side of my body would become temporarily paralyzed.

Each time a new symptom developed I would go back to the doctor only to be told that there was nothing they could do but suggest I go to therapy (which I already had been doing).

May 2023 I lost my ability to speak and it became increasingly challenging to swallow. I was told this was due to a lot of tension surrounding my vocal cords. I went without speaking for 2 months, relying on charade moves and technology to communicate. I was admitted to hospital from July 28th-August 16th 2023 due to an episode of ventricular tachycardia. During admission, I was then put on amitriptyline to help combat the migraines.

While the medications helped with the pain associated with the migraines, my other symptoms continued to occur.

More recently, I was experiencing periods where my heart rate was rising from 68 bpm to 175 bpm. The ER doctor mentioned that it is possible that I may have POTS, so he increased my dosage of Propranolol.

2 weeks ago, after expressing how debilitating my symptoms have been and continue to be with my family doctor, I asked him to go over my previous test results with me. It was then over a year and a half later that I learned that I have an arachnoid cyst super-lateral to the optic chiasm, to the left.

Turns out, I have a family history of cysts on the brain. I also learned from research that head injuries and Covid-19 can have an impact on arachnoid cysts.

For the past year, I have been continuously shut down from further investigation of my condition and told that it was all psychological. I don’t believe this to be the case.

This has impacted my ability to work, my ability to attend university, as well as my social life. I feel as though I am sleeping away my life; I’m like a walking zombie 24/7. I want my life back.

Has anyone experienced anything like this before? And if so, I would be greatly appreciative to hear how you manage these symptoms or who you sought out for help.

Thank you! 🙂

@myers713 is my daughter. We are desperate for help. Any advice or options would mean the entire world to us. 🙏🏻