Arachnoid Cyst

My daughter has been dizzy all day every day for 4 months now and we’re going to go see a neurosurgeon because she had an MRI and it showed an Arachnoid cyst , it’s the only thing that could be making her feel so dizzy and nauseous

Also we live in Missouri close to Barns hospital

Contact the neurosurgeons at Barns Hospital,Saint Louis

Hello. I had an operation for a sub-arachnoid cyst a year ago. The standard clinical explanation seems to be that arachnoid cysts can be left untreated if they do not directly cause any neurological disturbance. The first neurologist that I consulted seemed to take this orthodox line and said that no treatment for the cyst was necessary. But my symptoms, bad headaches, confusion and short-term memory loss, were getting severe. So I got a second opinion and this time the MRI, CT and Spect scans, as well as WAIS IQ testing, indicated that the cyst was seriously affecting me. As I understand it, particular symptoms in each case depend on the location of the cyst, and how much the cyst has swollen. Mine was located adjacent to the limbic system, and directed pressed on a part called the fornix, which is part of the memory apparatus. I had 6-hour endoscope surgery through my forehead, the purpose of which was to cut a small hole in the wall of the cyst and let the fluid disperse. I was pretty scared at the prospect, but the immediate outcome after the pressure was relieved was quite dramatic. In particular, the IQ test score improvement (which I guess depends on short-term memory processing) one week later was remarkable. The operation didn't involve removing anything, and the accumulated fluid wasn't pus, or some unwelcome material. It was just having this huge balloon in my head disrupting brain function. The balloon needed "popping". Further, the scar on top of my forehead isn't bade. It just looks like a small depression.
It's no small thing, but after I had been in the neurosurgery ward, and seen the kinds of brain surgery most of the other patients had undergone, I felt rather fortunate that my problem was not more clinically severe.

I share the pain of these posts and have been debilitated since 2012. I finally learned why so many doctors lie to our faces about these tumors not being the cause of our symptoms: GREED. I am no longer able to Ork now snd am on disability and have noticed ever since, I don't get diagnosed with ANYTHING because doctors don't want to perform the service at the Medicare agreed price if they can do it for someone whose insurance pays more, which is often twice as much. They will order loads of testing or procedures that nurses have to do, but anything really involved by a top doctor like a brain tumor in a really hard to reach area like skullbase (I have a rare neurenteric cyst which I bet isn't even that rare-it was just impossible to find out what it was until electronic records came into being. Doctors used to tell me I had a tiny benign brain tumor and would keep an eye on it. Then I was able to look up the name listed in the differential diagnosis. Then a radiologist noted it could only be a neurenteric cysts due to signaling attributes with contrast. So I read everything about NC and discovered they were called differed names and also we're rare and always should come out no matter the size due to caustic cyst contents and leakage and repeat rupturing causing chemical meningitis and eventually becoming malignant. Even the area of the brain mine is located in, the Area Postrema, is emetic and causes nausea and vomiting, which I have had bouts of all my life and related to the dizziness and now I am dizzy and nauseous all the time but unable to vomit (read why that happens and not good considering the caustic stuff getting trapped.) I was lied to by three different neurosurgeons in Milwaukee and found out about another one who had come from Philadelphia, Dr. Kassam. I was so hopeful and they ordered all kinds of MRIs and when my consultation came, in walked not him but a different surgeon who said she had no experience with neurenteric cysts and told me it could not be causing my sypmtoms because it was protected (omg-straight out LIE) And not touching anything. All lies. Would not even order a spinal tap when I said I thought it had to be leaking. Only said will do another MRI in a year to see if gets bigger (which has no relevance with a neurenteric cyst, plus an earlier mri showed brain sag from spinal fluid leak which I have since found out and they would have seen). A few months later I got a spontaneous cranial fluid leak and it was coming out my ear, nostril and a pore near eyebrow where I had terrible face rash. I called the neurosurgeons and the assistants/nurses talked and agreed NOT to tell the surgeons. Omg! That type of behavior must all come from the top and you know isn't done to those with the good insurance or paying out of pocket. They should not say they accept Medicare or lesser types of insurance that don't pay as well if they're going to lie and ruin people's lives, but we all know what greed does, and how people rationalize their actions in their minds. Or they simply don't care. So, you need to be aware of this. I am going to have to go to Mayo now and the drive will be absolutely horrific and sickening. No other choice though since they don't do insurance and you turn that in yourself. I will have to pay for whatever isn't covered by cashing out more of my retirement, which I have had to do before since becoming so disabled by this tumor in the last 6 years. It has plagued me throughout life and totally ruined many of the years while my daughters still home but luckily not small. The horrific headaches and pressure in my head and noise and limbs now numb and feel weird and pain all over and in back of neck plus heart palpitations and can't control blood pressure and all the cardiology tests when it's the brain stem, which controls breathing and blood pressure, causing all of the issues. Do your research. Report this fraud to the Joint Commission and Federal Medicare Fraud or whatever applies when you're well enough. They'll keep doing this as long as they keep getting away with torture and murder, which is exactly what this is. Mental and physical. Just horrible. My heart goes out to you all and those of you trying to help loved ones. Bless you!!!

Hi, @bessiealice, and welcome to Mayo Clinic Connect. Sounds like you have been through a lot. You mentioned you were experiencing headaches and pain in the back of your neck. Have you found anything that helps with the pain in these areas?

@kyoto - also wondering how you are doing?

@abbydo - has your daughter now had her appointment with the neurosurgeon? How is her dizziness?

Hello Lisa and everyone,
It's been 16 months since my cyst surgery. My condition is much better, and I still sometimes find myself marvelling at the sharpness of my restored memory. However, I tell my doctor also about the occasional periods when the symptoms appear to reappear, and he is keeping an open mind about the reason for that. Basically, I seem to have come through this as well as can be expected. I hope everyone is fine.
David

Hi, @kyoto - sounds like you are experiencing many benefits of your surgery for your arachnoid cyst, including a much sharper, restored memory. It also sounds like you are having occasional periods of recurrence of symptoms. What types of symptoms have come back at times?

@matthewlucas052513 @mango - you posted previously about an arachnoid cyst. Wondering how it's going?

@husbandandwife - you mentioned a cyst that had been removed and grew back. Wondering how things have gone with that recently?

I have just been diagnosed with an arachnoid cyst. I am terrified! I have had headaches, dizziness, numbness and tingling in my left arm and hand, severe fatigue (I could sleep all day), throbbing in my head and more! I had surgery years ago on my left ear for otoschlerosis and was horribly sick for weeks after from dizziness. Took half a year to overcome most of the dizziness. Not wanting to have another surgery especially on my brain. I'm getting more emotional lately and less patient with everything. Yesterday I was hot/cold all day like my internal temp control was out of wack. Had a friend die recently from a brain tumor so my anxiety level is rocketing!

Hi, @cmay5691 - welcome to Mayo Clinic Connect. Sounds like you have had a lot of symptoms you are facing, with the numbness and tingling in your arm, headaches, dizziness, temp control out of whack and fatigue. The anxiety also sounds really hard.

I'm hoping that members like @kyoto @abbydo @husbandandwife will return and share their experiences, and I'd also like you to meet @hopeful33250 and @johnbishop, who may also have some thoughts for you.

You mentioned not wanting to have another surgery after your previous experience with surgery on your ear. With your diagnosis with an arachnoid cyst, what did the doctor suggest as a next step, @cmay5691? Was surgery an imminent possibility?