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Pineal Cyst: What symptoms led to your diagnosis?

Brain Tumor | Last Active: Sep 3, 2023 | Replies (40)

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@jeep

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.

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Replies to "Hello to All! I noticed recently that I was referenced in several messages, so I thought..."

@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.