I just had my yearly one and am supposed to see the neurosurgeon so he can look at it but I came home in between because it was going to be an hour and a half wait (that and I desperately needed my allergy meds). So not having thought of it earlier I just called them to see if I should bring last years in to compare. They said no. The whole thing is strange since I moved here.

In Michigan the copy I got always had a report in it, and they also kept a copy. In the reports they compared it to the previous one. Not this guy, he throws it up on his lightbox, tells me I’m fine and that’s all I ever hear. The last report I actually saw a couple years ago it WAS growing. It’s my brain and my tumor and I’d like to know what is actually going on with it. I’m the freaking patient! So because this dr isn’t all that nice and acts like I’m a pain for even coming in and having MRI’s (which he told me to do), I will ask my medical dr if she is getting reports and if not I’ll ask her to request them. It’s my brain, I’d like to know what’s going on with it.

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?