Pineal Cyst: What symptoms led to your diagnosis?

HI
Can I ask how did your cyst showed up? Was it sudden? What are the doctors telling you.?
Do you have seizures? This is my speculation, but I think that this cyst came on due to lack of oxygen to the brain. I know that the medical staff say that the cyst is benign and usually doesn't cause problems, I would like to know what kind of problems? Our life has been put on hold. From what I have read, there are doctors that specialize in pineal cysts. That is what I'm trying to get in touch with a head trauma specialist. Just recently, my husband went for a C & P Exam (he is a veteran and he trying to get disability benefits). Anyway, one of his claims that he filed was sleep apnea/narcolepsy. This doctor dealt with Trauma Brain Injury. We told the doctor that he had this cyst, he automatically knew all about the cyst. and of course, it would be causing his sleep pattern. But I couldn't ask him any questions. So that's one of my goals is to find that kind of doctor. Since it is neurological, he has to be referred to that kind of doctor. I read about doctors located in North Carolina, Texas and in Oregon. I have read that surgery has been successful. At least this doctor could answer some questions that we are inquiring about. I'm sorry that you are going through mess. At least, I'm glad there are other people out there with same issues. I found a support group on Pineal Cyst for him on Facebook. At least he doesn't feel alone and hopefully his depression doesn't get worse. Thank you for sharing and it's nice to find support. Again, thank you.

Hello, I'm new here as well and have not heard back from anyone but can do my best to respond to your post. My wife of 24 years has expressed your same frustration. My symptoms have been going on for six years and are not as extreme in regards to dropping things but my fatigue is a daily battle and I struggle every day to present a positive upbeat partner to my spouse with some success and some down times. My larger health has suffered in the same manner that I was always outside and doing things and very active. Take heart and know it can get better. I've worked hard to accept what I can and work on the rest. I do take medication for the chronic fatigue and still see doctors (both medical and psychological) to monitor my cyst and depression (another byproduct) each year. I also lost my hearing in my right ear when I got my first vaccine shot and I'm not too sure the two are not related. This also adds to my fatigue. I guess all I can add is don't give up. With patience and time I have become more active again but it takes work. Every day is a challenge but I do my best and work hard to share with my wife (I did not always as I'm the type to keep my mouth shut and power through things - no pain no gain etc). The best advice I can give is be open and honest. Our relationship has been challenged but has also grown and prospered. I wish you both the best. John

Hi
I guess I’m looking for answers and support for me (caregiver) and my husband who has a 6mm pineal cyst. He has a lot of medical issues and has been dealing with this for over a year. He had last year a TAVR (Transcatheter Aortic Valve Replacement) procedure. His symptoms were more noticeable after that procedure. He could be texting and automatically drop his iPhone and be asleep or unconscious for a couple of minutes and not complete his thought process. That is just one of many episodes. He is on Keppra medication. We know that this cyst deals with your sleep cycle. His sleep pattern is so off the charts to me. He dozes after breakfast, mid-morning then lunch and after lunch doze and doze again later midafternoon. Then in the evening he dozes off and tries to stay awake till bedtime. Most of the time goes to bed very early and then sleeps a couple of hours then up and this cycle starts all over again.
He also has seizures – dizziness, can’t move numb lips, tingling etc. They don’t last long but he has about 4 -5 episodes a month.
Do any of you have these same issues, and if so, what do you do about it? Any help is greatly appreciated. I’m not sure what questions to ask and who to see. The cyst was diagnosed in March 2023, medication started in May 2023.
This is not the man I married over 40 years ago. We were very outdoorsy people – camping, hiking, etc. We live in California, in the very north. I kept googling and Mayo Clinic would come up and I’m very grateful for their website as it has been very helpful. Looking for answers.

Hello all, just found this thread and can relate to all @jeep described early on. Six years of being passed around and every test in the book. Mine is 12mm and thankfully not growing. It was discovered after I took a fall and was knocked out. Does anyone know if these things can exist and not cause any trouble but then start causing issues after a concussion? It would seem logical something can get shifted and then begin interfering with other items in the brain. Thanks for all your posts and it is helpful to know I'm not alone.

Hello @non242021 and welcome to Mayo Clinic Connect. I understand you feeling the need to pursue the incidental finding of the pineal cyst now that you know it is there. That said, if the testing is unavailable and the prognosis wouldn't do more than confirm, because as you said, there may not be anything more that could be done, it seems somewhat futile.

If the main symptoms from your sleep disorder lead you to pursue diagnostic testing, I wonder if you don't return to your original path. Either that, or perhaps you might be considering a second opinion regarding the origin of the cyst?

If the sleep aspect is still your greatest concern, I'd like to invite you to join the Sleep Health Support Group here: https://connect.mayoclinic.org/group/sleep-health/

Also, due to the covid emergency telehealth rules expiring, I will no longer be able to see my current doctor without travelling from NC to Illinois. Given that nobody in my area seems to *really* understand non-24, this is very concerning.

Although my doctor did say they are willing to coordinate with and consult for any doctor that can see me in-state and see me in Illinois when necessary. I'm sure many others are dealing with this.

Last year I had an MRI due to my diagnosis of non-24 hour sleep-wake disorder and a "narrow visual field". They found a "T2 hyperintense, peripherally enhancing enhancing lesion in the region of the pineal gland measuring 8 mm (8:15)". My doctor at that time considered this an incidental finding.

My current sleep neurologist thinks it actually may be related to my non-24 (sighted). Tests like DLMO and urine melatonin testing supposedly can help determine this (and help treat non-24 in general) but the only company doing DLMO for clinical purposes has stopped doing so recently.

I don't know what to do with this information. I may not be able to get the testing because it is unavailable in a clinical setting and even if I knew that the pineal cyst was the cause, I don't know if there's anything that could be done (other than possibly using a beta blocker and relying only on exogenous melatonin according to my doctor).

Hello, my 3 year old daughter became very sick last year and ended up being septic with seizure like activity. Was found to have a 9mm by 6mm sized pineal gland cyst. Was told we would revisit as she was still critical with the other issues. She has since developed kidney issues (VCUG Upcoming), consistent hypertensive state noted by the hospital and tachycardic, echocardiogram upcoming), underproducing bone marrow, and has had a weak gait since beginning of her illness with positive babinski bilaterally, with no improvement of lower extremity weakness despite months of physical therapy. She had an MRI of her spine which was normal however the hospital told us her cyst had grown in a months time, and we were being sent to neurosurgery. We will be seeing them in two weeks. I just wanted to know what your opinions were, as to the size of it, and what neurosurgery might be considering. Two of hospital physicians felt they might be considering surgery and a spinal tap as well. Thanks for the input!!

Thank you for putting me in best group. I’m on the edge today but will push through. Hate to make commitments I can’t get out of but i did and can’t today. It won’t kill me. I’m willing to try to go anywhere to any specialist who is using the latest treatments and people getting relief. Don’t have lots of $. Just want to live. This is like 1/2 alive with tinnitus.

Good luck with your exams. I’ve never followed the pineal cyst thing since my pcp said they’re meaningless & most people have one & aren’t found until after death. Was hoping it would shine some light on tinnitus but he blew me off about it. If you find out anything Please let me know.
I think you mentioned in another post about your eyes moving all around. I had that too. Before one eye protruded & I was dx with Graves’. 7 yr later I was dx with Menieres to explain attack at 4 a.m. room spinning wildly eyes spinning wildly. Throwing up , diarrhea. Had to call 911. They gave me IV with I think vertigo meds and fluids. It resolved pretty quickly. The attack was preceded by a terrible migraine that morning before & I thought I was having a heart attack. I’m watching salt intake closely & on fluid pill. The tinnitus is inescapable except during sleep. There is no help, cure, meds , nothing. Just have to somehow live with it. I isolate a lot.
Good Luck. Get well!