Pineal Cyst

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

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.

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@blewicki

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.

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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?

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@lisalucier

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?

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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.

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@lisalucier

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?

Jump to this post

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.

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@uldiver

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.

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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!

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@elsk

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.

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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.

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@aggiegal

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!

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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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@aggiegal

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!

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Dr. Dong Kim.

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