Many people come to my blog from searches for pineal gland tumors. I thought I’d try to be a bit more informative about these brain tumors than my last post which was about my personal journey with the diagnosis and treatment of my own tumor. So here’s a list of things I know (or believe) to be true about pineal gland tumors, from my experiences and from extensive reading. I am by no means an expert or doctor so do make sure you are discussing this with a doctor! I’m posting this more as a means of reassurance for people newly diagnosed with this type of brain tumor.
I was diagnosed in 1999, with my shunt surgery immediately following. In 2003 I had most of my tumor removed at Duke University Brain Tumor Center. My tumor is growing, but not fast and it’s much, much smaller obviously so I’m really not worried. Other than the really strange feeling from the hydrocephalus, and yes, the upward gaze problem, I have really had no big problem with this. I have gone through things that to me were much worse, the tumor was a snap to deal with really.
- A pineal gland brain tumor is very unlikely to kill you. I know of one woman that was in my tumor group who did die some time after her surgery to remove hers. She ended up with locked-in syndrome and died from complications.
- A pineal gland brain tumor can become an emergency health problem if it blocks the aqueduct of Sylvius, which serves as a passage allowing cerebrospinal fluid (CSF) to leave the center of the brain where it is first produced. Pineal tumors often compress this aqueduct, causing a build up of pressure of CSF in the brain (hydrocephalus).
- If it is not large enough to block the aqueduct of Sylvius, you can probably live with it with no problem.
- If it does block the aqueduct of Sylvius, causing hydrocephalus, you will need treatment to either install a shunt as an alternate pathway for fluid to drain (which is what I had done) or have a procedure called a stereotactic third ventriculostomy. Third ventriculostomy creates a tiny opening in the bottom of the brain using a small endoscope to allow the CSF to escape. This procedure is usually performed under local anesthesia.
- A pineal gland tumor can also cause visual changes as a result of involvement of the nearby tectal region which has a primary role in controlling eye movements. These changes may include: inability to focus on objects, double vision and impairment of eye movements. I was having trouble with my upward gaze, my tumor was quite large and growing, hence my decision to have a second surgery to hopefully remove it all.
- You doctor may prefer to do a biopsy, I did not choose that route, although obviously they biospied my removed tumor.
- The two treatments I have discussed with my surgeons were surgical removal and radiation. I went with the surgical removal.
- Most pineal gland tumors are benign! Do not panic.
- You do not need a pineal gland to live. Mine has been gone since 2003 and was so entombed in tumor, probably for years, that who knows when it quit functioning.
Well, that’s it folks, the extent of my knowledge unless you want the gory details of surgery 😉 Seriously, if you have to have a brain tumor, this is probably the best one to get.
Edited to add the last one on the list because someone came here from a search “do you need a pineal gland to live?” As far as I know I’m still alive 😉
Edited again to add a link to my previous tumor post and a newer post:
Pineal Gland Tumor
What is a Pineal Gland?
Hi Anita,
A bit more good news about the daughter of my brother’s sister-in-law. This rare form of Spina Bifida has finally ruled out the Pineal gland.
She is doing better, headaches less, dizzyness less, she now drives fine and has no fainting spells.
The doctors still have her on a wait and watch situation, as this is not 100% diagnosis.
And her mom who had her Pineal gland out, is doing extremely well, way way better than they ever thought, as it was diagnosed so late. She is re-married and happy as ever, finally.
And Im taking another WordPress class, but miss you greatly, as you sure were the best teacher. Email me if you want to see my latest attempt and the pictures of our storm.
Jane
Hi Jane,
That’s great to hear! It’s amazing what we can live through/with isn’t it? 😉
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I was so glad to find you. I’ve had a very hard time finding someone who has had a pineal tumor and had their pineal gland removed. I had surgery on March 6 2011, followed by radiation to remove the last 7% they couldn’t get. I was declared tumor free and recovered quickly. Now I’m having trouble sleeping and I am tired all the time. I have no energy and I struggle with sadness. I would really like to talk to some one that has been through the same thing and has no pineal gland and find out how it effects your life.
Thank you for your time. Lisa
Hi Lisa,
As people always ask me, have you tried melatonin for the sleep? I actually haven’t but your pineal gland regulates your circadian rhythm, so things can be pretty whacked out. My regular day seems to be 30 hours (awake that is) and when I try sleeping sooner I just can’t. I’ve suffered from depression forever so I can’t say that part is related to my pineal gland, but it could be I suppose. There have been some great comments in here from folks and we all seem to have the same types of issues, but I’m not sure we are finding many answers. Still, it’s nice to know you aren’t alone at least. I’m glad you had a good outcome, they weren’t able to get all my tumor. I’m not worrying about it though, it’s a lot smaller than it was.
Anita
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[…] Edited to add links to a couple of my other blog posts What is a Pineal Gland Tumor? […]
My brother had 7cm pineal germinoma. After VP shunt surgery and Radiation and Chemotherapy, his tumor was completely removed. Doctor told him disease free. But after 1 year he again diagnosed eith cancer in abdominal His biopsy report is yet to come. His lungs and abdominal is full of pleural fluid. Doctor told that cancer cells seeds via Vp shunt. Do you know any case of this? please reply soon.
I’ve never heard of that Ved.
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Hi…just checking in. I was diagnosed with a pineal gland tumor in April of 2009, and underwent Gamma Knife in December of that same year. I’ve just had the fifth consecutive MRI in as many years, and was told NO CHANGE, which is what we want. I was also told I do NOT have to have an MRI next year, and instead of every year now they will check it every two years. Big gift, that.
Sending love and well-wishes to Sliloh for being here from the very beginning, and to all who come here seeking comfort and hope. Believe. xoxoxo
That’s great news Rochelle! Thanks for the update 😉
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Sending love <3 You really were my first beacon of light. xoxo Thank you.
The pineal gland produces melatonin, which helps maintain circadianrhythm and regulate reproductive hormones..thanks for sharing a good information
in this blog..
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