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Thoughts About Pineal Gland Cysts

Updated on October 9, 2011

Some Thoughts for Those with a Pineal Gland Cyst

Neurologists tend to ignore them, people don't understand all the symptoms, and doctors tell you to see a psychiatrist. Having something listed with the National Organization for Rare Disorders is not the most comforting thing. It isn't necessarily the end of your world either. Some thoughts about having a pineal gland cyst:

Not Much Help From Neurologists

This is a pivotal complaint from people dealing with a pineal gland cyst. When I first saw my neurologist, he thought I had migraines. It didn't make sense to me, but he's the brain doc, and I am a peon. To "ease my mind", he ordered an MRI, and he also prescribed anti-migraine medicine.

He was surprised when the MRI came back showing two issues: the pineal gland cyst and, perhaps from cerebrospinal fluid pressure, partially empty sella sac. He was compassionate and said he wanted to do more research.

At our follow-up appointment, he told me the cyst was not causing my symptoms, that I was just anxious and needed a tranquilizer. Sigh.

He is a good doctor. His response is typical of most neuologists' responses. They don't know what to do. Very little research has been done on pineal gland cysts. Very little research has been done on the pineal gland period. So it isn't entirely their fault that they have no answers.

It's frustrating for us on the receiving end to be told our symptoms are figuratively all in our head when there is a physical, literal problem in our heads. Until more research is done, and until more people keep pressing for better answers, we are somewhat stuck if we choose to remain in mainstream medical care.

Edited to add my neurologist is now considering surgery as an option. Look for updates at my pineal gland cyst journal.

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Benign is Not Harmless

I never realized how different these two words could be. Having a cyst in my brain that is benign is different than having something harmless. "Benign" means the cells are not dividing, and it is not eating healthy tissue. "Harmless" means it does not cause harm. A pineal gland cyst can cause significant harm, and in some cases, coma and death. With severe headaches, dizziness, visual disturbances, gait changes, head pressure, and fatigue, they can rob life, enjoyment, competence, and confidence.

So what can you do?

There Are Choices!

There are some options. Here are a few I researched. Please feel free to add others in the Comments Section.

One of my frustrations was that I found forums full of "Oh my God, I have this pineal gland cyst, and my doctor has said it isn't causing my problem!" There is little conversation about what helps and hurts. There is virtually no conversation about what the options are.

Surgery

There are a handful of surgeons in the world who will operate on this. The best options are endoscopic and stereotactic surgery. They are less invasive and have a less-awful recovery time. I do not have health insurance, nor did I want to send my records all over the place and continue to get the same response. I've listed several surgeons I know of in a pineal gland cyst lens who are sympathetic to the problems pineal gland cysts can cause and do operate.

Because I don't have health insurance, I have looked at other options. There are several exceptional hospitals in India where surgery is an option, and I recognize this isn't necessarily the best choice for everyone. I keep it on my short list of possibilities if my first two treatment methods don't work. A hospital in England is also a possibility, although I don't know for sure that they will operate on this.

I have read that people who have had surgery have been healed of their symptoms, and their lives are normal after recovery. What is hard to find are the surgery stories that are not successful. It doesn't always work. Sometimes people go through surgery, and the pineal gland cyst comes back. Other times, other parts of the brain are damaged as a result of the surgery, and the person must then live with a different list of symptoms.

For me, surgery is a possibility and a last resort.

Qi Gong

I also looked at going to China for treatment. This is my next step if my current treatment doesn't work. I believe very strongly in a medical system that has been around for thousands of years, and there have been numerous positive reports of brain tumors being healed in qigong centers.

The ONLY downside of this protocol for me is being away from my home and dogs for a month or more. If it treats my problem, it is worth it. I am still considering going to China in addition to following my current treatment protocol as they do not contraindicate each other.

Diet and Nutrition

I am including this as part of my treatment now. I am a firm believer that many disorders can be helped by having a clean and healthy diet. My diet is strict. I drink 30-70 ounces of water a day -- shooting for the high end and making it to somewhere in the middle. I have cut out wheat, gluten, sugar, alcohol, dairy, and yeast. I occasionally enjoy a glass of wine and occasionally have a small portion of cheese.

Yes -- I miss some things. I do, however, have a better grip on my symptoms, I've lost some weight, I feel leaner and stronger, and I think more clearly. I probably cheat too often to get the full benefit of my diet, and there is not doubt that my health has improved.

Bioidentical Hormones

Many people with pineal gland cysts also see an ear, nose, and throat doctor, and some see an endocrinologist. For me, getting my endocrine system tested was crucial to feeling better. I was deficient in several important hormones, and my doctor has been great at getting my body regulated. For me, I think it is the combined pineal and pituitary problems, not just the pineal gland cyst, and because so little is known about the pineal gland, I believe it has more functions in the body than we know.

Remember, absence of evidence is not evidence of absence.

Low-Dose Naltrexone

This is completely experimental! I've never read anything that supports this can help a cyst. However, after researching low-dose naltrexone and the physiology of the body and making of cerebrospinal fluid, I believe this can help dramatically. I believe this can help my pineal cyst disappear. Stay tuned at my pineal gland cyst treatment journal for updates. Luckily I found a great doctor who is also a microbiologist and a firm believer in LDN (low-dose naltrexone). Time will tell.

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Faith and Belief

I believe our thinking has an impact. I am not so totally open to metaphysical or New Age thought that my brain is falling out my ears, and I am a firm believer that how we think, our spirituality, and our day-to-day passing thoughts, whether conscious or unconscious, have an important effect on our health.

I stop short of being a total Law of Attraction fan. I think that puts too much blame on us for not "creating what we want in life". It implies we haven't thought the right things often enough, in the best way, that we don't really want what we say we want, etc. There are just too many ways to turn Law of Attraction into "I suck for not having the life I want", which doesn't help anyone feel better in any way. Sometimes life happens.

The pineal gland is considered the Third Eye -- our spiritual home -- the seat of the soul. It has had connections to spirituality for centuries. I do not find it an accident that my Third Eye has been blown up like a balloon by a gooey cyst after three deaths in my family in three months, losing my home, putting down several old pets, and being suicidal. I do not find it an accident that my pituitary, which controls many hormones related to sexuality, is smashed against the wall and not functioning very well after a traumatic sexual past and a sexual violation by a therapist who was supposed to help me.

I do not find it a stretch to think that two years of being sucidal and worrying constantly is connected to what is going on in my brain. Which came first? Who knows. If I believe they are connected though, I can take mental, emotional, and spiritual steps to heal. I believe in the power of hypnosis. I believe in the mind/body/spirit wisdom that our modern society is just now beginning to relearn.

I believe we can heal ourselves -- we just need to remember where we left the keys to the locks. We need to take some responsibility for our own health and look at things we can do to improve our lives rather than wallow in them another minute longer. Sometimes wallowing is necessary; sometimes it is habit. Luckily, we have the power to turn the times that are habit into something else. It isn't easy, especially when we feel lousy. Not being easy, luckily, is not the same as not being possible.

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    • Lady Lorelei profile image

      Lorelei Cohen 5 years ago from Canada

      Having a rare illness is indeed a rough voyage. Best wishes for you on your road to recovery.

    • profile image

      mackitten 5 years ago

      Wow thank you for writing about this it is very informative and current. Most of what I was able to find regarding people with pineal cysts is old forum threads. I was lucky in that not too long after mine was discovered I have been to a surgeon who is willing to operate.

      The hard part now is if I should wait and watch and try something for my pain in the meantime or go head with the endoscopic procedure.

      Best wishes to you

      Jennifer

    • InquisitiveOne LM profile image
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      InquisitiveOne LM 5 years ago

      @mackitten: Greetings Jennifer and thank you for visiting. I'm sorry to take so long to reply. I've had a client at my home on Retreat and haven't spent much time on the computer.

      I am sorry you are also struggling with a pineal gland cyst. I understand the dilemma of waiting and watching or going ahead with the surgery. In all honesty, I am beginning to lean towards surgery. It is hard to live with this thing in your head. Like you, I found numerous old forum threads, but not much actual information.

      May I ask where you're located?

      I would love to stay in contact as we maneuver through this challenge. You can reach me at angeronalove "at" gmail.com.

      My best to you and take care.

    • profile image

      Blonde_Bella9 5 years ago

      Thank you so much for writing this. I have a daughter who will be 5 in March that was diagnosed back March 2011 (3 days before her 4th Birthday). I have had a heck of a time finding information on it.The one doctor told me that she has had it since she was in the womb. The doctors dont have much information other than "Dont worry." Well the Pineal Gland is only known to be 8mm and her cyst is 5mm. She has had many other health issues along the way. She is scheduled for a 2nd MRI 3 days after her 5th Birthday. I am disappointed that no one can give me an estimated ratio of Children with this condition. I have been informed that it is more common in Women age 18-24yrs. Well since she is so young I do worry. I have free health care in Canada but the docs tell me bcuz of the location they will not operate until she is in a critical condition pretty much. If anyone has any further information please let me know. Thank you so much.

    • profile image

      Blonde_Bella9 5 years ago

      Thank you so much for writing this. I have a daughter who will be 5 in March that was diagnosed back March 2011 (3 days before her 4th Birthday). I have had a heck of a time finding information on it.The one doctor told me that she has had it since she was in the womb. The doctors don't have much information other than "Don't worry." Well the Pineal Gland is only known to be 8mm and her cyst is 5mm. She has had many other health issues along the way. She is scheduled for a 2nd MRI 3 days after her 5th Birthday. I am disappointed that no one can give me an estimated ratio of Children with this condition. I have been informed that it is more common in Women age 18-24yrs. Well since she is so young I do worry. I have free health care in Canada but the docs tell me bcuz of the location they will not operate until she is in a critical condition pretty much. If anyone has any further information please let me know. Thank you so much.

    • profile image

      Blonde_Bella9 5 years ago

      Thank you so much for writing this. I have a daughter who will be 5 in March that was diagnosed back March 2011 (3 days before her 4th Birthday). I have had a heck of a time finding information on it.The one doctor told me that she has had it since she was in the womb. The doctors don't have much information other than "Don't worry." Well the Pineal Gland is only known to be 8mm and her cyst is 5mm. She has had many other health issues along the way. She is scheduled for a 2nd MRI 3 days after her 5th Birthday. I am disappointed that no one can give me an estimated ratio of Children with this condition. I have been informed that it is more common in Women age 18-24yrs. Well since she is so young I do worry. I have free health care in Canada but the docs tell me bcuz of the location they will not operate until she is in a critical condition pretty much. If anyone has any further information please let me know. Thank you so much.

    • profile image

      Sunnyjo 5 years ago

      Wow... I am soooooo glad I found this site. My story is long so I will try ;-) not go into it all. When I read your story I was so amazed because it sounded almost exactly like my story. I was diagnosed with a pineal cyst back in 1988. I was pretty much told not to worry and that I was probably born with it. The doctor suggested that I see a psychiatrist. He did it nicely but it wasn't the advise that I expected. I did go however, and my Dr. J. helped me sort out a lot of the "abuse issues" that haunted me when I was a young girl. (ages 6-11) I am now 58 and have been on so many medicines I think "guinea" should be my middle name. :-/ Ugh!

      I am a spiritualist by choice as it the closest thing I can relate to regarding the mysteriousness and higher power of this vast world we live in. I write poetry .. and also "used" to give readings and hands on (or off) healing, which I did become certified to do. I guess you can say I am a certified medium that would like to be a large. ( tee-hee)

      I retired in 2000 as a teacher of children who had emotional/behavioral problems. I loved it very much but had to give it up due to problems with my "balance" and depression. ( and a 2nd ( and final) husband that was poisoning me.) NOW THAT IS ANOTHER STORY!

      Sometimes people would think I was drunk because of the way I was walking. (even now at times) although I have learned to stay at home when having an unbearable day!)

      After visiting Cleveland Clinic and about 5 different neurologists, ENT's etc. etc. I had just resolved myself to realizing that after 30+ years.. there is nothing much more I can do . I don't think I would go through an operation ( the 1st Dr. said it cannot be operated on, however that was way back when ) I like to think it is the part of me that guides me to be the spiritual being I am although sometimesw I REALLY don't think I belong "here". No one seems to understand that, evem my best friend ( since 5th grade) However she supports me and loves me anyow. whew!

      I guess this is getting long enough however this is only the tip of the iceberg. I would gladly make a donation for your operation if there is a mailing addy.. I don't have a face book account ..( My 2 sons have been after me for that)..

      Ok, I am going to stop now or I will just go on and on. I wish you excellent luck and hope you reach your monetary goal soon. THANKS YOU again for your site and info about this topic. I really thought I was pretty much alone with this "diagnosois."

      Blessings to you and yours....I will stop by to see how you are doing...... ( been a few months since your last post.. hoping you are happy and healthy)

      Love and Light! ~ Sunnyjo ~

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      suzanne-brown-54 4 years ago

      There is a facebook group (private) for Pineal Cyst sufferers, where you can get lots of help and support if you would like to join all your comments etc. are private its called Pineal Cyst. Please let me know if you would like to join and I can invite you.

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