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-   -   Pineal Gland Cyst (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/224150-pineal-gland-cyst.html)

DannyT 08-05-2015 03:15 PM

Pineal Gland Cyst
 
I had an MRI done at the end of July and they found a cyst on my pineal gland. My neurologist didn't even mention this to me as they said in the notes that the MRI was unremarkable. I had to ask my family doctor for the notes on the MRI and that's when I found out earlier today.

With my visual symptoms I am a bit worried. Anyone with any experience with this? Should I be concerned?

Lara 08-05-2015 03:40 PM

That's interesting.
How big is it did they tell you Danny?

There are past posts from members on TBI/PCS regarding Pineal Gland Cysts. You might want to check them out at some time.

I think a lot depends on the size but I read an abstract in PubMed that suggests that size doesn't necessarily affect symptoms. Meaning a small cyst could cause symptoms as well.

If it's very small and asymptomatic, it sounds as if they just keep an eye on it, but I'm not sure. I'm really surprised your Neuro didn't mention this to you considering all the symptoms you've had.

It may be the cause of a lot of your symptoms do you think??

Mark in Idaho 08-05-2015 04:17 PM

Here is a link about Pyneal Gland Cysts. https://rarediseases.org/rare-diseas...s-symptomatic/

They are usually benign. If your symptoms that fit with pyneal gland cysts did not manifest until your concussion, then connecting such symptoms to the cyst is questionable. There is a huge overlap between PCS symptoms and pyneal gland cysts.

There is really nothing to worry about in my estimations. That is why your neuro did not mention it.

Lara 08-05-2015 04:28 PM

I've noticed what seem like accidental findings only after an MRI for TBI/PCS symptoms, but I wonder if a TBI can cause a pineal gland cyst? I didn't read that it could, but am not sure.

DannyT 08-05-2015 07:15 PM

I appreciate the support. Needless to say, I'm a bit overwhelmed at the moment. I hope you're right Mark and it is nothing to worry about. Still, I'm a bit bothered by the fact that I wasn't informed about a foreign mass in my brain.

I wasn't told the size of the cyst today. I should be finding out soon. I will update this thread as I find out more and what this might entail. Will be seeing a NeuroOpthamologist next week and am gonna have him look at the MRI for a second opinion.

I really did not need this. I hope I can sleep tonight. My anxiety is off the charts currently.

Lara 08-05-2015 07:26 PM

Danny, comeback_kid_11 is one of a number of posters who had findings of a pineal gland cyst. I just looked in search feature.

This may be a little more reassuring. I totally understand your concern though.

http://neurotalk.psychcentral.com/post1114391-2.html

Mark in Idaho 08-05-2015 07:38 PM

I was tempted to suggest your neuro did not mention it because he expected it would be a cause of increasing your anxiety. Your anxiety can be worse than the cyst.

It is not a foreign mass. It is just a sack of fluid that normally just drains or is absorbed by the body. Nationwide, less than 100 are symptomatic and require treatment each year. Historically, these fluid-filled bodies appeared on 1-4% of magnetic resonance imaging (MRI) brain scans, but are more frequent at death, seen in 21-41% of autopsies.

One of the problems with getting MRI's done, especially when there are no valid indicators for the MRI, is that benign things are often found. Benign means the condition has no negative health impact or is not spreading.

There are many imaging and diagnostic systems that if used frequently, would have lots of people seeking treatment for conditions that are not worthy of treating. Many MRI's are done just to alleviate anxiety and protect doctors from liability. Few are done for true medically necessary reasons.

DannyT 08-05-2015 08:17 PM

I thought that the neuro may have intentionally left it out at first as I was the one who requested the MRI. Still this seems to be yet another area of medical knowledge that is lacking. No solid research on causes of these cysts, function of the pineal gland, ways to diagnose lesions in this area properly.

If I wasn't experiencing symptoms associated with pineal cysts I would not be so concerned. The visual symptoms that appeared, and the tinnitus worsening with SSRI administration and melatonin discontinuation lead me to believe there is a connection. The pineal gland stored serotonin and produces melatonin. It can't be a coincidence. And of course I have the debilitating fatigue and light sensitivty. Hardly an "incidental" finding in my case.

Now will I have surgery for this? Not if the symptoms improve or the cyst doesn't enlarge.

Also, it is impossible for a doctor to tell for certain whether or not the mass is cancerous strictly from imaging.

All reasonable grounds for concern.

DannyT 08-06-2015 11:45 AM

I woke up today and a sense of dread overcame me as I realized this pineal growth was a new reality that I was going to have to deal with for the rest of my life.

I'm not doing well with the news. There is no treatment for it due to the gland's location in the brain. I guess I will have to learn how to cope with this newest addition to my condition. I'm very scared of catastrophic complications including possible cancer or further brain damage from the cyst growing.

And to think I was actually beginning to feel a sense of acceptance and contentment with the PCS...

DannyT 08-06-2015 02:22 PM

I received the written report today from the MRI which reports a finding of a "9mm benign pineal gland cyst"

I just broke down in tears as this is larger than I expected and I am convinced some of my symptoms could be caused by it.

I don't know what to do anymore. I feel like giving up.


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