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:
Hi .. Very interesting reading your story.
A very close friend of mine, 26yrs of age was diagoned with the same.
We are still in the process of following up tests, but it seems very consistent with all what you have written.
Question to you is .. Is this really a serious problem ?
What are the surgery procedures involved ?
She is going for a full Spinal MRI tomorrow morning, and it frightens me.
Kindly shed some light ..
Thanxs
I tried to email you Nitin and it bounced so if you come back and read this reply with a working address
Thanxs for the prompt response.
Please re-send the data
Nitin
[...] Edited to add links to a couple of my other blog posts What is a Pineal Gland Tumor? [...]
Thanks foe this article, it is impressed me a lot. I think you are really very strong person, if I am diagnosed with the something like this, I think I will die just because of depression.
Dear Shiloh,
My husband has just been diagnosed with a pineal gland tumor. It is about 2 cm wide. It doesn’t appear to be growing, however he has migraines and has trouble with his eyes. I watched a video at the following link: http://www.skullbaseinstitute.com/video-nbc-pineal-tumor.htm. Is this close to the surgery you had done? We are trying to decide whether it is better to take a risky surgery,so that his migraines will end,or if the risks of the surgery/complications will outweigh the possibility of just living with the migraines the rest of his life.
The woman who died–was it from a pineal gland tumor surgery?
That is not what I had done, but I wish it was. They basically removed my skull in the back and went in. I still have numbness back there. While that girls migraines might have been caused by her tumor, I wouldn’t have the surgery to get rid of migraines, as awful as they are. Why? Because it clearly doesn’t cause all migraines and 6 years after surgery I still get several migraines a month that last for more than a day. I had surgery because mine was already larger than anyone else in my tumor group and was growing, and I was having the visual problem.
Yes, the women who died had the same surgery I had, but in CA. No surgery is risk free, especially brain surgery. On the other hand, they’ve done enough of these at the major brain tumor centers to be competent at them.
I forgot to mention–he CANNOT wake up in the mornings if his life dependend on it. He also stays up past 3 am habitually. I am almost certain that the tumor is responsible for these changes in his sleeping pattern. Do you know if they make replacement melatonin supplements for people who have had the gland removed?
Yeah, I have that same problem, except more so. I don’t seem to function on a 24 hour day at all, I sleep less and go 30 to 40 hours at a time some days. I haven’t looked into supplements but it does seem logical that there would be such a thing. For my lifestyle this works. If I had an 8 to 5 job I don’t think I’d be able to do it.
Some people are just night owls without brain tumors, so it’s hard to say if that’s the cause. I was a night owl all of my life after leaving high school. Of course, I probably had that tumor growing even then. Your husbands is also on the larger side, most people in my tumor group had ones measuring in mm. It may very well be affecting his natural rhythms. I didn’t notice any change in mine after the surgery but the surgeon told me my gland probably hadn’t functioned for years. I think looking into supplements is an excellent idea.
Hello
I had an operacion for pineal tumor on 6th of february 2009.I also had hidrocefalia like you but my operacion for it vas with third ventriculostomy.Since my operacion I have a vision problem.I somehow look double,but it is not very easy to discribe it.Did you had the same problem with the eyes and for how long?
No I didn’t have a problem with that. I had some visual problems before my last surgery but once most of my tumor was removed they were gone. If I were you I’d be talking to my doctor about that. I hope it’s only a temporary problem.
Hi, I came across your website because I too have a pineal region tumor, measuring 3cm x 2.5cm x 2 cm. I am considering having it remove by the Skull Base Institute (same as video linked by another commenter). I have debilitating headaches daily, constant tinnitus, and constant bilateral facial numbness. I have only episodic visual problems, but I find them hard to describe – sometimes it feels like it might be double-vision, sometimes more a blurring/inability to focus. I guess I’m posting here to ask you if you thought your surgery was worth it. What was the pain like in the recovery process? Have you had problems with depression and short term memory loss after the surgery?
Thanks.
I think it was worth it, mine was growing and I was having visual problems. So waiting until things got worse would have been dumb. Yours is pretty large too. Mine was, but most only measure in mm. I was out of the hospital in 4 days and home in a week (had to stay to have my stitches out) and the very worst part was the pain in my neck from the incision. Didn’t really hurt up in my scalp but my neck was real sore. Still, it was not as painful as having a baby!
I think that version of surgery would be even less traumatic to the body.
I had the depression before surgery so I can’t lay having depression now on either surgery or the tumor. The same for my migraines and tinnitus. Or my bad memory. I seriously didn’t notice any real issues afterward, it was really a piece of cake. But I didn’t expect it to solve all my other issues and it didn’t. It was just that at some point you need it out when it’s getting so big it’s squishing your optic nerve pathways.
I went in the e.r. on Wednesday morning because I was having some issues with my hand and, altho I figured it was some kind of tendon thing from exercising, something in me wanted to rule out a stroke. Turns out the hand thing was entirely unrelated, but if I hadn’t asked for an MRI I would not have learned I have a penial gland tumor. When you hear “brain” “tumor” and “rule out cancer” in one sentence, the floor comes out from under you. The e.r. doc did say that it’s small, and that they probably caught it in time, and sent me for a ct scan. Since I have no insurance, I am going the county route, but the county is Los Angeles and that means UCLA…so that’s good news. I don’t even know what type of tumor it is yet (waiting for the follow-up appointment and have yet to be referred to a specialist)…but it’s so early I have not experienced any of the symptoms you or the other folks are describing. I consider it a gift from God that I even KNOW about this now…crazy.
Anyway, I was going to wait to leave this note until I had more information. But I wanted you to know…everything I had been reading about this went from dire to worse. I happened upon your blog here, and your above bullet points…especially #1 and #8 are the only reason I got any sleep last night. I bookmarked this page and read them again this morning…and will read them again and again when I need to make myself feel better. I am hoping for benign…B9, B9, B9 ;o)…GOD BLESS YOU Sliloh, for this blog and your honest, hopeful information. You are a little hug for a hurting, worried soul…and I appreciate you.
Hold a good thought for me…I will forever hold one for you.
Rochelle, I wish you the best of luck. I hope you come back and let me know what they found. I have so far, not heard of one of these tumors (of the pineal gland) that are cancerous. I imagine some are, but it must not be too common. Many doctors are loath to operate on them at all because they don’t really cause harm until they start getting large. Although, I think migraines are the one thing almost everyone I’ve talked to with pineal tumors complains about, I still get those so can’t lay it on the tumor! UCLA is a great place to go, just try not to worry too much. Catching it before you have symptoms is a good position to be in. Ten years ago I took a very long ambulance ride to Henry Ford hospital for emergency shunt surgery because mine wasn’t found until I developed hydrocephalus. They’ll be able to keep a close watch on yours now
Hi! In 2006 I went for an MRI because of migraines. They said it was normal. November 2008 I went back for another MRI because the migraines were getting worse and more frequent. They said, “The test show that the Pineal cysts from 2006 had increased in size.” It measured 10mm in diameter. I went to a neurosurgeon and he said my eyes checked out fine and there was no need for surgery and this wasn’t causing my migraines. I just went back for another MRI last week and they said it had decreased. The measurement are 7.7mm x 9.7mm x 7.5mm. I don’t see how that is. I don’t have regular headaches, only migraines. They keep getting worse and more frequent and migraine medications don’t work anymore. I can take ibuprofen and that works. My pain always starts at the back of my head, at my neck. I constantly feel tired. I’ve had occasional left arm pain, mainly in my forearm, and I’ve noticed a numbing sensation in my pinky finger. What is your opinion of all this? I’ve thought about surgery but I’m scared to do it because I have a 3-year-old son. My doctor said he would only do surgery if my women’s intuition told me I needed to have it done. My mom has a friend with a pineal cysts and she found a doctor in NY that specializes in these surgeries.
That’s not very big, mines about 7 mm now too. I had most of mine removed. I still get migraines. I’m not sure it’s related to the tumor/cyst at all. A lot of people get migraines. A lot of people both with and without brain tumors. I think it’s worth having it removed if it’s growing and large enough that you are having effects from that. I wouldn’t risk it for a cure for migraines (since I’m pretty sure it won’t cure them). I also get mine in the back of my head and there is one thing that has worked like a miracle…Maxalt. That pill is amazing.
Thank you for your advice. Yes, Maxalt worked great for me until it stopped working, it would knock out my migraines in less than 30 minutes. I’ve also taken Imitrex in the past and it didn’t help at all. The same thing with Frova. I took Midrin until I had an allergic reaction. I have to go back to the doctor next Thursday about my migraines so they will probably put me on something else. I had a doctor to tell me one time that if the migraine medications aren’t working that makes her wonder if they are even migraines. I did notice that my migraines started getting worse after the birth of my son. I’m not suppose to take ibuprofen because I also have Crohn’s disease but that is the only thing that knocks it out.
That’s a shame it quit working. Imitrex did nothing for me either. Then I saw a dr about medications to actually try preventing them in the first place. Which were, hmm some kind of antidepressant (wellbutrin, effexor?), Tenormin which is a beta blocker (blood pressure med), and darn if I can remember the third one. You might try talking to them about those. None of them prevented mine but apparently it works for some folks. I’ll concede that it’s possibly related to the tumors/cysts, since I still have some of mine left, but I’m just not convinced. I hope you find an answer, i’m still searching for one too. I lose several days a month to these headaches.
Hi Shiloh, guess what, I’m reading your blog all the way from Singapore! Your blog has been inspirational and I would like to seek some advise from your personal experience.
My boyfriend, aged 28, was recently diagnosed on 30 Apr 09 with a pineal gland tumor that measured 2.4 cm x 1.6 cm x 2.3 cm. He went for a VP shunt op 2 days later and has since recovered pretty well except for the lightheadedness he feels which I heard can be adjusted quite easily. Anyway, regarding the post VP shunt treatment, the first doctor (Dr X) he saw advised surgery. The second doctor (Dr Y) he saw advised strongly to start with radiotherapy to see its response in 2 wks. He said that it would likely shrink if it was a germinoma and could well continue to shrink with continued radiotherapy treatment. However, if it didn’t respond to radiotherapy, he then has to go for open head surgery which was risky, given 1 in 5 chance that something may go wrong in surgery.
Both surgeons have excellent track records. Dr Y successfully separated siamese twins conjoined at the brain before! He’s in a dilemma as to which treatment to choose (radiotherapy or surgery). Understand that both procedures have its risks but should surgery be used as a last resort only?
Hi Marilyn, I had one dr who wanted to do radiotherapy, however I would have had to go quite a distance 6 days a weeks for several weeks. When I consulted with Duke about surgery they thought it should come out. I went that route but no one threw odds or percentages at me and if they are experienced with them I don’t believe the risk of surgery is that high. I don’t know that many people of course who have had either treatment so mine is not a scientific belief
My preference was just to get it out of there rather than the hassle and expense of a treatment that might not even be effective on my tumor. They did not remove mine in entirety because it’s stuck on my hypothalamus. If they’d have tried I could have ended up blind, or worse. But an experienced surgeon should be able to handle it I think. I was seriously not that stressed or concerned heading to surgery. Maybe I should have been. My biggest disappointment is that they didn’t get it all.
My best wishes to him, I think either that he decides on he’ll be fine
Hi Sliloh,
I hadn’t replied again because I was hoping to have more to tell you after my appointment today, but the truth is I don’t really know all that much more. Turns out the tumor is bigger than I thought…it’s essentially the size of the pineal gland itself and the doc said today that it’s butting up against some other important stuff up there in my brain. My fault, really…they told me in the ER that it was “small” and that the pineal gland is the size of a pea. I’m thinking a small tumor in relation to a pea-sized gland, and was thinking of the tumor as being about the size of a grain of salt or sand in relation to the pea. So it’s bigger than I thought, but not bigger than THEY thought. I have to keep reminding myself of that. They have now referred me to county hospital USC and the neurosurgeons there…I am to have a blood test to check for the markers for germ cell. That appointment and the tests are supposed to happen sometime between 2 to 4 weeks from now.
The good news is, neurologically I checked out great, and my eyesight is still as yet unhindered. So I’m essentially still NOT having any of the expected symptoms/difficulties so I am hoping this means it’s still early and we’ve caught it in time.
God this just sucks. How did you handle your emotions, your mood, and your fear? I’m just a raw little pile of pulp here most days. I still come back to read “most pineal gland tumors are benign..don’t panic!”…but the fear some days is consuming.
I appreciate your page here, and hold you and all posters here in my heart.
Rochelle
I can see where the confusion was. I’d still say it’s small. Mine was closer to the size of a tennis ball by the time it was removed. It’s not hard to believe it’s abutting important parts in there. That’s why they couldn’t completely remove mine. Mine was originally found in 1999. Other than having immediate shunt surgery to take care of the hydrocephalus they never even thought about doing a biopsy, even when they knew it was growing. So clearly no one was overly worried about it being cancer. It was only in 2003 when I started having symptoms that the first surgeon suggested a biopsy and radiation and the second removal.
As for the mood and stress part. Well, I think I should be thankful that I was in a severe depression at the time, because seriously, the tumor was just not that big of a deal to me. It was more like “wow, that’s bizarre” than worrying about dying
I have told my dr many times, I’d take 100 of those tumors over the depression. So it was really just a bump in the road both physically and mentally. If you can recognize that physically it’s not affecting you much now, hopefully the mental part will learn to relax with that. But I do know that just the words ‘brain tumor’ is going to inspire fear in most people. There is so much that can be done now that I’m not sure it needs to be a terrifying thing unless it’s an aggressive cancer, which I’m betting yours is not.
Just hang in there and think positive. It takes some getting used to that you can live just like you always have with a brain tumor along for the ride. Keep me updated and you can come in here anytime with questions (although I am no medical expert) or just to talk to someone whose been through the same. I do know that really helped me at the time too and it’s also how I found my way to the surgeon who was willing to operate.
Hi Shiloh,
Thanks for your advise and prompt response. We’re still in a dilemma as we’re overwhelmed by the risks that we have to take into consideration. Radiotherapy before surgery may cause a higher risk in surgery afterwards which troubles me because risk of surgery is already high.
What was your surgical procedure like? We were briefed that a long incision has to be made at the back of the head and a chunk of skull has to be drilled out before they create a small hole to squeeze the microscope deep into the brain to remove the tumour. Did you undergo the same procedure?
How fast did you find out the results of the biopsy? What side effects did you suffer from after the surgery? Did you undergo radiotherapy after surgery to remove the rest of the tumour?
By the way Rochelle, I read your comment. I was told that blood test for tumour markers are non-conclusive. It is a good sign if you’ve been tested negative for tumour markers as it means that your tumour is not as bad. However, it could still be benign OR cancerous. Germinomas are cancerous but is considered a “good” form of cancer as they can be treated by radiotherapy.
Thank you so much for your time. It helps to know how similar patients deal with this through this forum.
I think I had heard that radiation could raise the risk in surgery. That was exactly the surgery I had done. The worst immediately after was the pain in my neck, the incision was quite low. But I was out of the hospital in 4 days and home in a week (I had my surgery out of my home state). I got home the day before Easter and on Easter Sunday my surgeon at Duke called me to tell me the tumor was benign (so just about a week after surgery). He was quite sure it was anyway, but it was good to know. If it hadn’t been I’m sure they’d have scheduled radiation. As it’s a very small piece left and that small piece is attached to important parts, radiation wasn’t discussed. I do have an MRI every year and everything is fine. I had absolutely no bad effects or anything after except that the back of my head had some numbness until nerves regenerated. Others I know didn’t have even that so I wouldn’t say that’s the norm.
At the time I was active on my tumor group there were several who had the same surgery in various places and they all came out fine. Except in the one case I mentioned in my post. I don’t know the details of her surgery. Different people had different experiences, one man complained about a stiff neck after, another about some visual issues. We were all glad to have had the surgery though
I went to the doctor last Thursday about my migraines and they have decided to do a lumbar puncture. I’ll have that done tomorrow. They believe that there is a pressure problem with my spinal fluid. Although I’m not over weight they think is could be Psuedotumor Cerebi (this is more common in an obese person). That kind of scares me because if that is it they will have to put a shunt in my head. My head and neck has been hurting since last Wednesday and the other night my eyes felt like they were going to pop out of my head. It felt like pressure behind my eyes. I just wanted to update you on my condition. I’ve never had this done before and I dread it but at the same time I want to know what is going on.
Shannon, I’m glad you came back and let me know. I do hope they find out what is going on. A shunt is really not too big of a deal. Well, okay, it is but not in the same category as removing a tumor deep in the brain.
I have a shunt. That was the first operation I had. It solved my hydrocephalus so I was good to go for a few years. If it’s a pressure problem, a shunt can totally take care of that. It would be well worth it. I wish you the best of luck. At least they have something they are looking at that will hopefully lead to a solution.
Thank you. I do remember looking up and saying to the Heavens, “Really? A BRAIN TUMOR? REALLY?! Someone up there thought this was a good idea?!” This kind of thing will totally kick your sense of humor right in the pants, won’t it.
And I’m a total mook, I keep checking my upward gaze.
Thank you for your positive words Sliloh, they matter very much. I am hanging in there and will let you know how this all fares. I’m in my “2 – 4 weeks-we’ll-call-you” holding pattern.
Yeah, it is totally boggling. You never think of it happening to you or anyone you know either. I think my sense of humor saved me, I made lots of horrible jokes about it
I doubt if you have to worry about the upward gaze unless it gets a lot bigger. But it sure doesn’t hurt to keep checking it.
The waiting is the hardest part and I know it’s easy to say try to relax and much harder to do. But try to relax!
I was just browsing thru the class instructor’s blogs when I came across this thread.
This is exactly what my brother’s wife’s sister-in-law was diagnosed with. She was a dance teacher and for the last 5 years or so, has had trouble with vision and balance. Her husband is sort of an ogre, and kept telling her it was all her imagination. It was just under 10 years that she knew that ‘something was wrong’! She finally consulted a doctor, when headaches became an issue, and after extensive testing, this was found.
About the size of an orange!
The surgeon said that is was very enlarged and the operation would be very tricky. But everything turned out OK, thank god. She is regaining her strength rapidly, vision and balance coming along fine and the thing was benign.
Hi Jane, I’m not surprised she was having symptoms with the size of it! Mine was also quite large. Bigger by far than anyone else on my tumor group. Because of that they couldn’t get all mine but so far so good! I’m glad to hear she’s doing well
Anita
hi sliloh just recived a letter from my neurologist informing me iv got a large pineal gland measuring 11.2mmby 5.2mm . iv been suffering from migraines for the past 15 years but in resent months iv been suffering really bad im on medication which i have to take every day beta blockers at night and sumatripan for the onset of the migraine which i find i have to take every day im also on 60mg of codine three times a day im wondering if they will remove mine or not .i have also had dizzy spells and fainting .
Hi Candice, A lot of people with pineal tumors seem to complain of migraines. I have no idea if it’s related since my tumor was mostly removed in 2003 and I just had one of my worst migraine weeks ever. None of the preventives seem to work for me. The dizziness and fainting would concern me. I hope they’ve run lots of tests to see what that’s about. I haven’t heard of that in regards to the people I’ve talked to with pineal tumors. I wish you the best, let me know what your dr decides.
Anita
I know you state that it probably won’t kill you, but I think people need to understand that the surgery is MAJOR RISKY surgery. And the fact is that after surgery many, if not most people experience long term effects, some of which can be debilitating. My husband just had a pineal gland tumor removed in october 2009, surgery went well, he is otherwise in great health, but over the past few months, he has had terrible post op problems. His main problems : severe and constant headaches, constant movement of his toes and feet, it looks like he is keeping beat with his feet, on and off numbness of his right leg, finger twitching on right hand, intolerance to cold (the titanium plate gets cold and produces weird symptoms including a “brain freeze” ice cream headache)…In addition, he has memory loss, fatigues quite easily, and cannot do his job well. He is a financial planner and is a “numbers guy”, now even some simple calculations are frustrating.
I think people downplay these tumors because they don’t kill, but quality of life is sometimes just as important. If you can’t work, function and have pain so bad you want to die, than that means this isn’t just routine one and done surgery.
I am a nurse and nurse educator, I have been blessed to have the physicians go over the scans with me, run extra scans and tests when I request it, and try different meds, so far nothing seems to make much of a difference expect oral dilaudid, which isn’t practical, my husband can’t function on it, so he only uses it about 1X per week at bedtime.
More research and support groups need to be developed online to address these postop side effects. There is no support for my husband or our family, which now will have to put our house in foreclosure due to medical bills and loss of income. These are all things that are very real and life altering. Plus the fact that pineal gland tumors can and do regrow, something we need to watch and wait for.
If anyone knows of a good online support group for pineal tumors or brain tumors (not cancerous, although johns hopkins couldn’t identify his tumor, so we don’t even know if it’s benign and won’t…we just wait and see what happens, his marker for HCG was slightly positive in the CSF, yet the pathology says no germ cells were found?) please let me know!
Thanks!
Barb
Hi Barb, It is a risky surgery, just look at where the pineal gland is located. However, the majority of the surgeries come out fine.
I think doctors downplay them for sure. Even when mine was growing my dr was very casual about it all. There’s nothing benign about something that large growing in your brain, cancerous or not.
I’m sorry to hear that he’s had so many bad post op problems. I don’t think that most people do. Many on my tumor group had surgery with no problems. My biggest trouble was the back of my head being numb for…well years I guess since parts of it still are. The nerves are regenerating slowly. No one else in my tumor group had a numb head. Every surgery is different and it sounds like something in his caused some damage.
I was on a tumor group for pineal tumors back before my surgery in 2003. It was run by a dr who didn’t join the discussion during the time I was there but it was a good informative group. He since died and the last time I went there it was all spam messages to hook up with some hot babe, so I no longer know of a good group for that.
I’m not sure why they couldn’t identify his tumor, I’d find that worrisome. Even though they were pretty sure mine was benign it was a relief to have it confirmed.
I should also mention that it’s not the size of the tumor that matters, but the location. My husbands was only 1cm in diameter, yet it was blocking the ventricle and caused swollen blood vessels…they still couldn’t get the whole thing because some cells were located near the brain stem and on a nerve that would have been destroyed…yet some of his symptoms may still be because of the nerve and damage that may have occurred, it is almost impossible to pinpoint that…
Yes, once it blocks the ventricle, it can be life-threatening, hydrocephalus can kill you. That makes the pineal gland a bad place for a tumor. That exactly why they didn’t get all of mine either, because it’s attached to my hypothalamus. Mine is growing…very slowly. I imagine it took years to get to the size it was so I’m not all that worried about it.
It does sound like he may have damage to that nerve. I hope it heals itself so he can have a functioning life again. I know that’s got to be really frustrating to think you’ve removed the problem to have all these other things start happening. I wish you both the best and I hope the doctors can come up with some way to help him.
Anita
Hi shiloh, my boyfriend took the option of radiotherapy instead of surgery. Thankfully, he has fully recovered and his second MRI result after xmas showed no sign of pineal gland tumour anymore. I hope this will give hope to anyone reading this and let u know that there is always a hope of recovery. Do email me at marilynteo85@gmail.com if u wanna know more or if there is any way I can help. Cheers
That’s wonderful to hear Marilyn! If I’d had a way to reasonably get there, I’d have opted for that. Still, I’m happy with my results too. It’s got to feel good to him that they seem to have gotten all of it. I still have to go for my yearly MRI’s, it’s not such a big deal though.
Thanks for letting me know, I’m so happy for you both
Anita
An update on my brother’s wife’s sister-in-law,,,,, she is doing great! Hers was about the size of an orange, because she didn’t find out what it was for about 10 years. She is back to instructing dance and feeling back to normal. Will be here for part of the summer, and it will be nice to have her back enjoying swimming and all the things she used to do.
I didn’t realize that this was so common, but thankfully most all of these are benign.
Yeah, it’s funny how they can get that big and you don’t know it. I’m glad she is all back to normal. I didn’t know they were either, until mine I don’t think I’d ever heard of a pineal gland tumor.
Hi Shiloh and fellow posters…I hadn’t updated until I had actual news for you…things move very slowly in county care. But I have two words for those inoperable tumors: GAMMA KNIFE. I went the whole route…CT scans, MRIs, I even did a spinal tap without benefit of pain killers…I was slated for a biopsy to test what kind of tumor it was, and the doctor called me the night before the morning I was supposed to check in to tell me that they’d taken another look at the size and location of the tumor, decided it was too risky a surgery, and declared it inoperable. I certainly wasn’t upset that they weren’t going to open my skull up in the morning, but having your tumor declared “inoperable” sounded pretty darn scary to me. Turns out, it was good news.
They opted for the gamma knife (what I had been praying for since April of 2009 when I first read about them online). No shaving your head, no drilling of your skull, no cutting, nothing invasive at all…they knocked me out to attach the helmet’s frame, but other than that I was awake for the whole thing. They fired those gamma rays at the tumor, and when they were done I went home, had some dinner, and slept in my own bed. I had a few weeks of off and on numbness, one day of some light bleeding from the pin sites, and other than that NO AFTER EFFECTS at all. I have to go back in March for the follow up MRI…but the thing is gone, I just know it. The other benefit to the gamma knife surgery is that once hit with the gamma ray, the tumors almost never recur.
I had mine done at USC University Hospital in Los Angeles by Dr. Pagnini. He is an AWESOME guy and the whole staff was fantastic. I am truly blessed.
Shiloh, I thought of you often throughout this whole ordeal and how this blog put a little hope in my soul. Your positive words and attitude made all the difference in the world to me, and helped get me through the toughest thing I’ve ever had to face…and I’ve faced a few. Thank you.
GO GAMMA!
Oh that is awesome news Rochelle! If I’d been offered that option I’d have jumped at it. Much nicer than walking around with a numb skull for years
I’m glad my post helped, I hoped it would. Because those are about the scariest words in the world…”You have a brain tumor”. See, you are contributing to easing the fears of others who find this blog. It’s good for everyone to hear about positive outcomes.
I’m so happy for you
Anita
I’m optimisitic that things are getting better for everybody so they can finally be who they are.
Update on my family member, she is doing great! And thinking of starting a new dance studio. Regained all her balance problems, and is really back to normal now. Those 10 years werent easy, guess its easy to mis-diagnose this.
Thank goodness she is OK now!
Hi Sliloh. I was diagnosed with a Pineal Cyst/Tumor & Epilepsy about 2 weeks ago. It is 13mm x 10mm. Since then I have been freaking out & researching non-stop, which is how I found your blog. Your story has been so helpful & inspirational to me!
I am only 25 yrs old. In 2008 I experienced what the docs at that time referred to as a TIA or mini-stroke. I had a horrible headache, numbness, slurred speech, etc. They put me on aspirin & that was it. Since that incident, over the past couple years, my symptoms have become increasingly worse and all of which come and go. I have had severe headaches, neck & back pain, nausea quite often, problems with my memory, visual problems; my eyesight has always been bad but continues to worsen & I have also been experiencing blurry/double vision, I often have numbness/tingling in my hands & feet especially when waking, ringing/buzzing in my ears, I am always tired & find it harder to make it through the day at work without napping on my breaks & lunches, I also have balance issues & fall down quite often.
About a month ago I was driving home from work & my vision started blacking out from like my nose down & also had a horrible headache & tingling/numbness all over my body, especially my face. Went to the hospital & they said it was another TIA (probably because of my history). I didn’t buy it. I’m only 25 & was doing everything I was supposed to. I found a new Neurologist & went in a couple of weeks ago for my first appointment. He listened to my symptoms & reviewed my previous MRIs. He then told me after reviewing them that he found a Pineal Cyst/Tumor & he did some eye tests & told me that I have one of the symptoms of Parinaud’s Syndrome. He also decided to do an EEG. The EEG showed that I was having seizure activity. He put me on anti-seizure meds & told me that the seizures & the tumor are unrelated & that the seizures are causing all of my symptoms & that the tumor is too small to be causing any of my symptoms. At first I thought great I can just go on these meds, be fine & forget about the tumor. But the meds are horrible! I am still having the same symptoms I did before plus more adverse effects from the meds. Also, the more research I do, the more I think that the tumor is the real problem & I should try to find a doc that wants to treat the tumor & not just epilepsy. I was wondering if anyone else has experienced seizures caused by their Pineal Tumor?? And, if so, what type of seizures? I didn’t even know I was having seizures, I was unaware of the different types. Mine are like instances of losing my train of thought when talking or “spacing out”, also I drop things out of my hands & fall down; lose muscle tone. So I am going to go off the meds & try to consult with some neurosurgeons that have seen/treated this before. I am pretty worried/concerned, but trying to stay positive. I would appreciate any input/advice. Thank you for sharing your story!!
Hi. I have just been told that I have an enlarged pineal gland. Measures 11.6mm, 10.2mm transversely and 8.1mm cephalocaudal dimension. I also have some fluid content involving small area centrally. I went to the doctor the beginning of July after a month of confusion and lethargy. Now I am having major vision changes throughout the day. I am hardly able to look at a computer screen or television because my vision becomes really blurred. I feel as though things are coming at me fast. My blurred vision is not constant. It is almost like I start to feel weird then my vision “goes out.” I need to find a new neurologist because my current one has acted very ugly to me and wont listen to me. I was just wondering what this sounds like to you all. Thanks so much and good luck.