Pineal Cyst: What symptoms led to your diagnosis?

Hello, I understand that you posted this years ago but I am wondering how you have made out with your pineal cyst. I have one too. It was found in December 2018 and I have had symptoms similar to yours. Look forward to hearing back.

Hi, @blewicki - welcome to Mayo Clinic Connect. I'm hopeful that @jeep will respond and provide an update on the pineal cyst and how the symptoms are currently.

I'd also like to introduce you to @susie2525 @loriagee71 @dailychronicsupportgroup @supraorbital @elsk. A couple of these members have been away for a bit, but I'm hoping they will return and share an update about their pineal cysts or cysts in this region that they mentioned previously. I'd love for them to share any tips they may have, too.

You mentioned, @blewicki, that you've had symptoms similar to @jeep's. Will you share more about what symptoms you've experienced and any suggestions for ways you've found to manage them?

If the cyst causes symptoms that require surgery, there are very few doctors that believe that these cysts can cause symptoms. There is one doctor in Texas that removes them and people have great success from what I’ve heard. It amazes me that people’s symptoms completely resolve with surgery.

Hi,
I rarely take part in these discussions but I think this is really important. I’m under the care and treatment of neurologists at major Headache Center but they never consider my pineal cyst to be the cause of my symptoms. I am lying here (which I have to do every day) because with the dizziness, fatigue and constant headaches, even sitting for long stretches is hard, let alone standing. My tinnitus is horrible, it seems to be worse the second half of the day or maybe I just notice it more in the evening. It affects my ability to concentrate. My vision sometimes is off as well, feeling pressure in the eyes and blurred vision, I just want to close my eyes to rest them.
Looking back at Jeep’s symptoms, I seem to have similarities. I am in a number of headache meds, and have even been hospitalized for my symptoms but alas they are still present, years now.

Do you know what Dr in Texas? I have a Pnieal Cyst with serious imbalance issues and many of the same symptoms. I have been passed around to differnt Dr’s and have been made to feel like I’m crazy. I am in Texas and would love to get another opinion. Thanks!

Has all causes of Vestibular dysfunction and cervical spine issues been ruled out? Have you seen a PT or Vestibular PT to see if they can eliminate some of your symptoms? Some of those can be treated conservatively now. But you have to find a good therapist that does manual and Vestibular therapy where you live.

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.

Dr. Dong Kim.

Hello to All! I noticed recently that I was referenced in several messages, so I thought it'd be a good time to reconnect! I still have that Pineal Cyst as a guest in my noggin and it still reminds me daily that it's there. All of those lovely symptoms that I mentioned in my messages are still with me. And as an encore, I'm starting to develop peripheral neuropathy in both feet. I've read research about pineal cysts and neuropathy and it is indicated, so now I'm dealing with another blessing!

I have pretty much just learned to live with them privately. I rarely talk about them to anyone and just get through the day as I can. Definitely use "distraction" as a tool. I spend a lot of time alone at home on the farm since my wife works days. Plenty to do. But since I'm alone I take a lot of breaks and enjoy naps in the afternoon. I try to eat well, avoid caffeine and salt, and do my yoga stretching routine daily along with one sudoku. I do have to resort to Lorazapam once in a while when the dizziness and headache get bad. It's liquid so one or two drops sublingual does the trick and works quickly. I jokingly call it "Easy Now" when I tell my wife when Ive taken it. When it comes to dealing with the neuropathy, not much to do other than try to keep my feet warm and protected.

Wish I could say that life has been fun managing that cyst but I am able to get by. Not really interested in surgery but if it gets to the point of despair, I'm thinking that surgical techniques are getting better and better. I get an MRI every three years at the VA. No growth but still there.

So, I've managed to get by for quite a while now and hope to keep doing the same. I've read many messages of others doing the same, so hang in there and try to keep positive.

@jeep Thank you for the follow-up on your pineal cyst journey the last 10 years. I've suddenly been experiencing dull headache, dizziness, mild blurred vision and nausea over the last 2 weeks. No one has been able to explain the cause and it is severely impacting my daily life. I had a brain MRI yesterday in the ER and it revealed a 8mm benign pineal cyst. I have a follow-up with neurology and a neuro surgeon one month from now (soonest I could be seen). Waiting that long for any type of answer is agony.

@jeep @uldiver @aggiegal @elsk @blewicki How large were your pineal cysts? I was told 8mm is very small by the neuro-radiologist who reviewed my MRI. My guess is the follow-ups are to discuss if this could be causing the symptoms and schedule another brain MRI to see if it is growing. From this thread, it seems like the doctor community at large doesn't really believe cysts can cause the symptoms, especially ones that small. I'm just struggling with what could be going on. To put it bluntly, these symptoms suck. Thanks for your insight.