Pineal Cyst: What symptoms led to your diagnosis?

Posted by Jeep @jeep, Aug 18, 2011

Seems that we've found that I Have a Pineal Cyst. It was discovered while investigating tinitis and vertigo issues. Nurosurgeon says it's not the cause of my symptoms. Other discussions I've read show many folks with PC having similar symptoms and similar conclusions by thier neurologist. Symptoms include visual disturbances (eye strain), diziness, fatigue, constant tinitis- often pulsatile, constant low-grade headache. The only relief is occassional doses of Lorazapam.

Anybody have any insight?

Thanks

Jeep

Interested in more discussions like this? Go to the Brain Tumor Support Group.

appraiser1946 | @appraiser1946 | Jun 28 9:18am

In reply to @uldiver "I don’t think my last post I tried went through so I’ll try again. As stated..." + (show)

@uldiver

I don’t think my last post I tried went through so I’ll try again. As stated above/below or however it displays, make sure Vestibular and spinal and all other causes of your symptoms have been ruled out. If you are 100% completely healthy and have a pineal cyst >1.4 cm(?) it can cause symptoms, but usually has to be fairly large to be the root cause. The treatment is brain surgery and that causes a traumatic brain injury. So if everything has been ruled out and have tried all forms of conservative treatment (PT, acupuncture, diet, normalizing deficiencies (vit D, B and magnesium to name a few that can cause symptoms), exercise (directed by an MD or PT (for whatever other probs you have) and the other forms of calming the nervous system down of decreasing stress, depression and anxiety by doing mindfulness regularly, meditation regularly, possibly tai chi or yoga if able and getting good at breathing exercises and of course regulating sleep as the main function of the pineal gland is circadian rhythm and medicines to address the dysfunctions, then at that point, surgery may be right for you.
For the most part they are right in that it doesn’t usually cause these symptoms, but if you get to Paranaud syndrome then at that point I believe they’d consider surgery. Otherwise, the after effects of brain surgery are all the same symptoms. Just education is all I’m giving. It’s very scary to have these symptoms and in fortunately there are an infinite number of causes of these symptoms and so many diagnoses to rule out (some with treatment and cures and unfortunately, some like all of mine that don’t have treatment and cures).
Hope that helps. I think the doctors name is ‘king’ or something like that. I was on the pineal cyst FB support group briefly and they mentioned it. The surgery was successful for those who had 0 other health issues and the cyst was the only cause of the symptoms.

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Hello there, very interesting reading these comments. I have had mild tinnitus for a long time. I also have essential thrombocythemia and take hydroxyurea for this condition. I have been on hydroxyurea for about two years. My tinnitus has gotten much worse in the past six months. My doctor has ordered a carotid artery scan, and a brain MRI. I have never heard of a pineal cyst and I am now wondering if this is what is causing my worsening tinnitus. Thanks for sharing this information and I will post the results of my test.

jammers | @jammers | Jun 29 8:11am

I have a pineocytoma, so a pineal tumor instead of a cyst. I was experiencing issues with eye movement and inflammation of the muscle around the eye. In addition to vision issues. I too was told that my eye issues were unrelated. I also have arthritis, which is more than likely the cause of the inflammation. But not 100% sure. Thus far no other symptoms like tinitus. All I was given for the eye issue was prednisone, which helped.

saints2003 | @saints2003 | Oct 29 11:51am

I have a bit of a unique situation. Not long after the covid jab I started getting these intense vibrations in my face and hands. They'd last 3 or 4 seconds at a time and happen 3 or 4 times a week. I ignored it, and literally told myself that's the big immune response to the jab they bragged about. Investigated potential surgery for a herniated L5/S1 and the surgeon sent me for MRIs. This was about 8 months after the jab. They found spinal cord lesions in the cervical and thoracic cord, but they also found a pineal cyst, 9mm. It ultimately turned into an MS diagnosis. But the neurologist still leaves room for it being something else given I don't have any disability. I have tinnitus but always have had, it's constant and they also found a good sized thyroid nodule but MRI's have been stable since spring 2022. I still get the vibrations but now they seem more like a seizure? No loss of consciousness but wow, they're intense when they happen. Latest set of MRIs was 2 weeks ago and the cyst is still there. I have a bad back, several bulging discs which have their own set of symptoms, but I wonder if the cyst is causing these vibrations - far more in tense than 'tingling'.

Lisa Lucier, Moderator | @lisalucier | Oct 30 2:38pm

Hi, @saints2003, and welcome to Mayo Clinic Connect. You've had to deal with a number of health challenges.

Here's one article I thought might interest you from a Mayo Clinic neurologist on pineal gland cysts https://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/

I'm wondering what your doctor has said about these vibrations you have experienced in your face and hands, and which now seem more like a seizure?

saints2003 | @saints2003 | Oct 30 3:42pm

In reply to @lisalucier "Hi, @saints2003, and welcome to Mayo Clinic Connect. You've had to deal with a number of..." + (show)

Those were also my original symptoms upon vaccination late summer 2021. On one visit she did say they were not typical MS symptoms. The MS diagnosis happened after a spinal tap contained oligoclonal bands ie. Elevated proteins. What confuses it all are a few bulging discs. The spinal cord lesions are in close proximity to a bulging disc. I have wondered if a disc issue and poor posture moments can cause those vibrations. My most recent MRIs were only a week ago so I will have a follow up before November is done and I will ask more about the cyst. I do have trouble sleeping and do wonder if that's a melatonin deficiency.