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 .. 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.
Barb, please email at SAGiff@aol.com We see the surgeon tomorrow for my dad. I have so many questions. Thank you!
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.
Bloggers happen to be under appreciated, many thanks for spending some time to post this.
Another update on my family member, she is divorcing her ogre husband!
But a bit of sad news, her youngest daughter who is about 22 is having the exact same symptoms. She is in the hospital now waiting for some extensive testing.
I didn’t know that this was hereditary, but we will know around Christmas what her diagnosis is. At least she knew what was going on and sure wont be made to wait those 10 years her mom did.
Jane
Jane recently posted..Lilly- the Rocket Dog
I’d be surprised if it’s hereditary but what do I know. I sure hope it isn’t! 😉
I will let you know when the diagnosis is completed. Theyve recently moved to Florida, so I dont see them any more. But my brother will have the news a bit after Christmas hopefully.
Jane recently posted..Lilly- the Rocket Dog
Just wanted to add my sons experience of a pineal gland tumour to this blog. He is currently battling a pineal gland germinoma diagnosed after a biopsy. The plan is to shrink it with chemotherapy and if anything is left at the end of an intense regime of chemo, they will follow it with steriotactic radiotherapy to destroy the rest. Apparently these tumours are extremely responsive to radiotherapy. It seems as though the word cancer has taken over our lives and I cant believe that I put my sons name and cancer in the same sentence. He is 6 weeks into a an 8 week course of chemo and is also having intrathecal chemo (injected into the spinal fluid as it reaches the brain via this route).
His first symtoms of this tumour were double vision and headaches and a problem with his upward gaze and when he was diagnosed he was told that he had probably had it for a 12-18 months.
However they did say that as brain tumours go this is probably one of the best ones to get due to its responsiveness to radiotherapy. I will post more as his treatment progresses – at the moment the chemo is knocking him for six and I just feel so helpless, but he was fit and healthy before he started so they can attack it more aggresively that they could with someone older and less able to cope – he is 23 .
Hi Suzanne, It’s got to be scary for all of you. I feel for him having to deal with chemo. From what I’ve read the treatment he’s following sounds like it will result in a good outcome. You will all be in my thoughts, please let me know how he is doing.
Thanks for replying sliloh, my son has just finished his last chemo treatment apart from one more lumbar puncture intrathecal chemo. He had an MRI scan two weeks ago and we have been told that the tumour has drastically reduced in size which is great news. Another MRI in 3 weeks time and then the possibility of radiotherapy to destroy any remaining cells. They told us at the beginning that this type of tumour has a 95% chance of being completely destroyed so that should be a ray of hope to anyone else on your blog looking for information and reassurance. I am concerned about his eyes though, he still has double vision which is how the tumour was diagnosed in the first place and it has got worse since treatment began. Has anyone had this type of tumour that has affected their eyesight and how are they progressing now? Thanks for your support it has been a truly awful time for all of us, especially my son who has been so brave through all of this.
Hi Suzzanne,
That is wonderful news! You must all be feeling very relieved.
I had the upward gaze problem but that went away after my surgery. One person who had surgery in my tumor group complained of double vision after his surgery. But that may have been for a different reason. I hope it will straighten itself out with time. I’d imagine the tumor pushed things out of the way and maybe it’ll just take time for them to get back to normal. I hope that’s the problem.
My very best wishes to all of you 😉
Anita
Hi, just an update on my sons pineal gland tumour and the treatment he has been through. His chemo finished in January and he had stereotactic radiosurgery in April to blast what was left of it (it had shrunk dramatically with the chemo). He had an MRI scan in May and we went to see the professor the same month, apparently the radiologist can see a tiny fragment still there but it could be just debris left over from the radiosurgery. He will continue to have regular MRI scans and 2 monthly visits so I know that they will be able to jump on any change straightaway. I must admit that it wasnt the news we hoped for, obviously that would have been that there was no visible trace of anything remaining but it is still good news and the prof says it is the best news that we could hope for. The prognosis for his eyesight is that is could take up to 2 years to return to normal or possibly it may never do. We can only hope and pray that it does.
There is so much unknown about this type (and other types) of brain tumour and in the UK brain tumour research is very underfunded and yet brain tumours are on the increase. I have my son back after some uncertain months and I am so grateful to all the staff at the hospital who looked after him. I will continue to update on this forum, because for anyone else facing the prospect of this type of tumour, I hope it will give hope and encouragement. We were told at the beginning of the treatment that “as brain tumours go, this is one of the best types to have”.
I understand the disappointment, I felt the same when I found out they didn’t get all of mine. I do hope his vision will recover in time. It makes me thankful I have the tumor rather than my kids, I don’t think I could handle that.
I think brain tumors are on the increase here in the U.S. too, with lots of discussion about cell phones. I don’t even own a cell phone :p
I was told the same when they found my tumor and knowing some people that have other kinds, I have to agree. I’m hoping he will be fine from here on out and thank you for keeping us updated.
We are devastated that our sons tumour has recurred. His eyesight began to get worse with blurred vision along with double vision and an MRI scan proved our worst fears to be right. This time he is facing salvage chemo in the form of high dose chemo with stem cell transplant (twice). He cannot have any further radiosurgery as he had the maximum dose first time round. So far standard chemo has kept the tumour at bay (it hasnt grown but hasnt reduced either) until the preparation for high dose is finished.
Despite the fact that the odds arent too good this time, we are trying to remain positive as everyone is different and every cancer is different so percentages are irrelevant.
I am also researching treatment provided by the Skull Base Institute where they remove these type of tumour endoscopically using the brains natural pathways to access the tumour (apparently the brain isnt even aware that anything has been in there!). We would obviously have to fundraise if necessary to get him there as we live in the uk, but at least it may be another option. I have to have another option in my head as cant accept that chemo is the only option.
In all his check ups at the hospital this tumour never showed any markers in his blood this time, only the MRI showed it up.
That’s terrible news! I hope you can come up with some kind of alternatives for treatment. I’d contact The Skull Base Institute and see what they say. I’d also contact Duke’s Brain tumor center: http://www.cancer.duke.edu/btc/modules/liaise/?form_id=7
I submitted a form and they contacted me in a day and told me to send my mri. That’s where I had my tumor removed. It wasn’t non-invasive but they may have that technology now. My surgeon there was the one that operated on Ted Kennedy, so you could say he is very good.
If you get to the point you need fundraising, let me know and I’ll do what I can to help.
You and your son are in my prayers.
Anita
sliloh recently posted..Who are the thugs, anyway?
Hi,
An update on my son’s tumour. He has finished his course of high dose chemotherapy and stem cell transplant now, this made him so ill that he was admitted to ICU for nearly 2 weeks and has left him so weak he can barely move. On coming out of hospital we were concerned because one of his eyes had gone upwards so that the pupil was covered by his eyelid. He was admitted to hospital and given steroids as a CT can showed some swelling and they also did an MRI scan. Yesterday we got the results of the MRI scan which devastatingly has shown that despite the intense treatment his tumour has continued to grow. It would seem now that surgery is going to be the only answer but finding a surgeon with experience and who is willing to attempt this in the UK is going to be very hard. We are now seriously thinking about fundraising for him to have the tumour removed at the Skull Base Institute in LA. We really would appreciate if anyone could give us some indication of how much it would cost and if anyone has had a pineal tumour removed there and their experience of the treatment. Thanks.
Suzanne
Oh Suzanne, that’s scary news. As for the cost, the institute should be able to tell you. I’ve heard really good things about the Skull Base Institute. You might try contacting Duke also, where I had my surgery. The Preston Robert Tisch Brain Tumor Center at Duke It can’t hurt to get an opinion from them also (The surgeon who operated on me also operated on Ted Kennedy). There are places online where you can set up for donations, like Go Fund Me. If you decide on fundraising, let me know and I’ll chip in and spread the word too. Sending prayers and positive thoughts your way.
Anita
Hi Anita,
Thanks for replying, I have now set up Stevens fundraising website and the address is http://www.stevensfightingfund.co.uk/ please could you share the link so that we can get it out to as many people as possible.
Thank you.
x
This is great news!
Update on the daughter of our family member who had the tumor removed, the symptoms were so much alike, that the doctors suspected it from the start. But now that the diagnosis has changed, its not one. They still arent sure what it was, but they thought it was swelling on part of the brain from fluid. There is a ‘drain’ where the excess fluid goes away thru, and if this doesn’t start working again, they can put a ‘line’ in to drain it into the bladder. But these last few weeks, the symptoms have almost gone away completely, so they are going to wait and see if it ever happens again. Still found no actual reason for it, virus, infection? Nothing found.
She is a lucky girl at the moment.
One more thing about an eye being the key to a diagnosis. Many years ago my husband’s mother was being treated for an eye infection, swelling and redness apparent. But when my husband took her to our local eye doctor instead of her regular doctor, he discovered an aneurism which was pressing on the optic nerve, surgery followed, and complete recovery. Isn’t it interesting how this was found out, not a single headache, no dizziness, no symptoms other than the red and swollen eye.
Lucky again,,,,,
Jane
Jane recently posted..Lilly- the Rocket Dog
Well, I’m glad it isn’t a tumor, I have a shunt. That’s the drain that runs down into your abdomen. Pineal tumors are in the worst place. They block third ventricle very often.
Yeah, that’s one of those “who’d have thought!?” moments. 😉
Anita
I guess that is what they will do if it doesnt get better, I didnt know it was called a shunt.
Last week, she was even better, so at the moment, nothing is planned.
I hope this is the end of it, wondering if it could have been a virus that gave her these odd symptoms.
Jane
Jane recently posted..Lilly- the Rocket Dog
Sliloh,
Thanks for your input on ‘pineal gland tumors’.
I was recently diagnosed with an enlarged pineal gland tumor. I’ve had several different types of MRIs of the brain, neck and spine. My neurologist thought I might have MS, multiple sclerosis. After looking at my MRI results of my spine he sort of ruled it out however, he wants to be certain so I’m having a spinal tap at the end of the month.
This all started with the nerves in my jaw. It felt like tiny little shock-waves.
December 31, 2010 is when I had my first jaw pain.
I’ll keep you posted …..
Thanks,
Puritan
Update on my husband who had a craniotomy in October, 09. He has continued to have issue after issue. The position of surgery seemed to have destroyed his femoral cutaneous nerve in his leg, causing a limp, loss of hair growth and an abnormal gait and balance. He has constant, severe headaches and is on oxycontin 20mg twice a day, percocet a few times per day and ambien and melatonin to try to sleep. His feels his memory is horrible, cannot organize himself, has mood changes and does have depression (and is on different meds for that). Hopkins did an occipital nerve block to see if that would help, but it didn’t.
One theory is that the location of these tumors, near the brain stem, can cause scar tissue when removed, causing some backup of cranial fluid. Not enough to warrant a shunt (at least according to our doctors), but enough to effectively destroy his life (and the family’s). He cannot tolerate noise or light, so cannot go to kids baseball games, cannot go to school assemblies or plays, and cannot go to movie theaters. He spends a good deal of time in bed, tired with a headache.
In our spare time, we have had cognitive tests done, PT done, seen psychiatrists, tried alternative therapy (I’m a huge fan and practitioner) including oxygen therapy, chiro, massage, moxi, and brain training exercises. Some give temporary partial relief, but that’s it.
I have connected with others on brain tumor sites and found that it is common to have long term effects with this kind of surgery. It just isn’t talked about. It’s part of that “morbidity” percentage that is horribly underreported. People feel uncomfortable attending brain tumor support groups, especially when it isn’t cancer. For my husband, his original spinal tap showed HCG cells, making us believe it would be a germinoma, however, tumor didn’t show any, in fact, tumor was finally called “unclassified” (??? whatever)….so, this is worrisome…by definition there is HCG in spinal fluid and cancer somewhere…have had body scanned and blood work done extensively….
He has applied for disability and been denied. He doesn’t qualify for his company’s disability assistance. His work is 100% commission, making it very difficult on everyone. With 5 kids to care for, including some with medical problems of their own, and with me only able to work part time (between caring for everyone and their health issues and my own issues with a pituitary tumor and possible early MS), we have had serious money issues.
Not to be a downer, but I think this is glossed over and I have found so little on the website regarding pineal gland tumors,long term follow up studies (which really need to be done), long term effects on the family, on work, on memory, on finances…and there is little support for families of patients with benign brain tumors. This type of tumor and this surgery is NOT an easy path for everyone.
Just yesterday, my husband had a seizure, the first we’ve seen since surgery (although I suspect he has had others and has hid them), had it while I was at work, in front of my children, leaving my 15yo daughter screaming his name and dialing 911. When he came to, he freaked out at her, took the phone and threw it, telling her he just fell. the stress this causes the family is unreported and horrible. I got paged for a family emergency, talked to the neurosurgeon, husband refused medical treatment, and I came home to comfort kids and keep eye on husband (with a b/p of 80/40 all night)…
I would like people to know I am available if they are diagnosed, not sure how that works, maybe my email can be passed along..I would be happy to offer support, any information I have gathered,and a sounding board!
Barb
I’m so sorry to hear that Barb. It’s a risky business when you start digging around in a brain. I still believe that most outcomes are on the positive side (for pineal tumors) and like I said, “if you’ve got to have a brain tumor, this is one of the better ones.” Of course no brain tumor is good. It’s bizarre that they don’t even know what kind of tumor it is!
I don’t know about long-term effects but I had my shunt in 99 and my removal in 2003 and for me at least any side effects were minimal. My head is still numb in the back. I know a lot of folks who had no ill effects. Unfortunately your husband got a lot of them. 🙁
That is ridiculous that he cannot get disability, but he should appeal it. I’ve heard everyone gets turned down the first time (I don’t know how true that is but it wouldn’t surprise me).
I’m keeping you in my thoughts, I hope they figure something out to help him.
Anita
Update re: Gamma Knife Surgery
Hi there Sliloh…I just recently had my yearly MRI to check the pineal gland tumor following the Gamma Knife Surgery I had. I had misunderstood what the gamma does…I thought it blew the tumor into smithereens, like an asteroid in a movie. It doesn’t. What it does do is kill the DNA in the nasty little beast to keep it from getting any bigger. The doctor told me at my update appointment that there was “no significant change”..which initially disappointed me..until he told me that was the best news I could hope to hear. That “no significant change” is as good as saying “it’s shrunk” because it means that so far the radiation is working. I have to have my eyes checked next week, and will do each thing at least once a year for five years to keep it in check.
I’m blessed, I know. <3
I'm sending waves of love and light to you and all who post here.
Rochelle
I’m not real familiar with it so you could convince me it does almost anything. 😉
If it’s not growing that’s a good thing but I sure understand your disappointment.
I was having MRI’s every 6 months, then every year but I haven’t made it the last 2 years, money has been tight. Hopefully this year. And the funny thing is I worked for Ophthalmologists for 17 years an I had never had my eyes checked until last December.
lol, bad me…
Wish you the best Rochelle!
Anita
Hi Everyone,
Another update: My husband continues to worsen.The pain is still awful, no other reason has been found except the surgery. his last MRI showed possible growth and scar tissue. He now shakes and has parkinson’s-like symptoms, especially when he is tired, like after he works in the evening. (and he doesn’t have a physically demanding job). He is very depressed, is unpredictable with moods, and has lost all interest in life and his family. It’s very sad.
We are seeing drs. at Johns Hopkins, Harrisburg, and hershey. No one has any good answers, we just experiment with different meds, with very little help. His sleep has gotten so bad that he is awake most of the night,with only brief periods of sleep, even after increasing his melatonin and adding some sleeping meds and antidepressants. As a nurse, I believe some of this is due to the fact that without a pineal gland, the sleep pattern/circadian rhythm can be seriously disrupted. I also believe his parkinson;s like symptoms are from a disruption in dopamine. He is taking seronin inhibitors and has tried a few of them to see if any help.
I am working on starting a yahoo group (I know there are 2 others, both are inactive), along with gathering information, both personal, and professional, like actual research, studies, case studies, etc.
If anyone is interested in being involved, has information to share, ideas, ways to help, things that have worked (both traditional medicine and alternative), i would love to hear from you.
please respond with “PINEAL GLAND” in the message title,so I don’t accidentally delete it. Send your information to Cavanaugh3@yahoo.com.
I am in the middle of a nursing graduate program and a large portion deals with research, studies, and learning more about funding, grants, and furthering research. I know more can and should be done, such as studies as to the the possible link between gulf war veterans and these tumors (my husband’s is not even able to be identified as either cancer or benign)….the hereditary issue,fluoride and calcification, etc. These are all issues I’d like to explore,write about, and help with furthering research.
Thanks! And thanks for this site! And for being here for all of us going through a rare and life-alterating tumor and surgery!
Barb Cavanaugh
Cavanaugh3@yahoo.com
Hi Barb,
So sorry to hear that things are not improving. I hope they come up with something that helps. I agree about the lack of a pineal gland messing up your circadian rhythm. I don’t even function on a 24 hour day, closer to 30 most days. It works okay for me without a 9 to 5 job but I think that could cause some pretty major problems even without the other issues he’s having.
It’s great you are setting up a group. I had one to go too back when I was dealing with my tumor. That’s where I got steered to Duke.There was a lot of excellent info shared among members. I thought it was a shame when it died out.
I agree they should be studying these more. The thing that surprises me are the common complaints we all have and the doctors blow it off as unrelated. Some of it I think might be unrelated (migraines) but who knows? I still have migraines but I also still have tumor remaining.
I doubt if I have much to offer but I’m interested in joining, no doubt I’ll learn something.
Keeping you and your husband in my prayers,
Anita
Hi there,
Firstly so comforting to see real people with the same problems and hearing positive things about what is a nightmare at times to live! So thank you Shiloh for making this blog and for sharing your story.
I became ill “over night” in January 2010 and only recently realised that infact it has been down to a pineal cyst. I was diagnosed with the cyst in January 2011 after I had a strange episode where I had two weeks of migraines followed by a big sudden onset migraine one day with speaking problems, being extremely dizzy and confused. When diagnosed I was told that it was not causing my symptoms and not to worry about it, but because it was large they would do another mri in 6 months time. In those 6 months I had a few problems with my eyes while on a computer or reading and general dizziness (which I thought was my thyroid). However I started getting headaches in June and went to my doctor after it had lasted for 2 weeks – he sent me for another mri and this time they told me they had noticed narrowing of my cerebral aqueduct due to the size of the cyst and gave me three options: have a craniotomy to pop the cyst (which they didn’t advise), have a pressure test in hospital (a wire inserted into the top of my brain to measure pressure) or do nothing and have mri scans every 6 months to monitor it. I still thought that my symptoms were not due to the cyst (I haven’t listed all of them because there are too many!) so opted to do nothing. Since June my eyes have become extremely painful and find it impossible to use computer of read most days, I get very bad vertigo which makes me sick, I have tremors which have been with me for 2 years (i thought they were something to do with my thryroid!) I get head pains daily with a dull constant headache. I am becoming very depressed because I can not do anything I used to, and I am feeling desperate to get rid of my symptoms. I have two children who are young and my priority is being around for them which makes a decision on what to do next very difficult. I have searched the internet for answers on the best way to proceed and feel that is it probably an endoscopic procedure which although I have found at the Skull Base Institute in America for $148,000 – I have found nothing as appealing here in England! I wondered if anyone knew of any such surgery on offer in England with someone who has performed this procedure a few times at least? I am very desperate and really can’t go on feeling the way I do everyday because I’m not able to really live my life, I just concentrate on getting through the day without becoming too depressed.
Secondly I notice that no-one is referring to a “cyst” – is it the same thing as a tumor – should I be asking questions about it being anything else???
I would really love to hear from anyone who is able to help!
Lilla
lillacroysdale@live.co.uk
Hi Lilla,
A cyst could be just as debilitating as a tumor, it’s still taking up space meant for more important things. It could be your symptoms are from hydrocephalus. I don’t know how big your cyst is but they can diagnose that with a ct scan. I’m not sure why they’d have to insert a wire in your brain to figure it out unless they did a ct scan and there wasn’t enough pressure to be obvious.
As for the Skull Base Institute, I know nothing about them. I do know there are places doing less invasive procedures than what I had done. But holy moly, that costs over $100,000 more than my surgery did!
A cyst is not the same thing as a tumor.
Cyst. A cyst is a sac that may be filled with air, fluid or other material. A cyst can form in any part of the body, including bones, organs and soft tissues. Most cysts are noncancerous (benign). Some common examples of cysts include sebaceous cysts, small bumps that form just beneath the skin, and ovarian cysts. It’s important to note, however, that nearly all cancers are capable of producing cysts.
Tumor. A tumor is an abnormal mass of tissue. Like a cyst, a tumor can form in any part of the body. A tumor can be benign or cancerous (malignant).
From: http://www.mayoclinic.com/health/tumor/AN00463
I don’t know that any of the previous commenters read here regularly or if they would have any advice. I know it’s still hard to find information and help (although it’s a lot better than it was when mine was found), my only suggestion would be to get a second opinion, and a third and fourth if you need to.
I do wish you the best of luck and I hope you find an answer somewhere.
Anita
Anita thank you so much for replying to my post. You are right about the hydrocephalus – I had an opthamologist appointment today and he talked about pressure build up which is probably due to the cyst because it is growing. It is measuring 17mm x 13mm x 24mm (not sure how big they usually become?!) I have also found 3 surgeons in england who operate in the same way as they do in the Skull Base Institute which is wonderful because I have medical insurance to cover the procedure in england. How long was your recovery from the operation and do you have any problems now from the surgery? Do you have children? – I just wondered if you did how old they were and how they coped?
Many thanks
Lilla
Yours is bigger than most I think. Mine was 4.6 cm so it was very large too. I’m so glad you found someone who treats them over there! My first surgery was to install a shunt for the pressure. It was about 3 1/2 years later that I had my surgery to remove it.
When I went to Duke in 2003, my 22 y/o daughter went with me. I had this plan that I’d just go there by myself but she nixed that 😉 My youngest was 16 at the time. I don’t know that either of them worried about it excessively, maybe because I didn’t. My daughter still tells me I was cracking jokes while they wheeled me into the OR. I don’t really remember.
I had a much more invasive surgery and I was still out of the hospital in 4 days and back home (in another state) in a week. The only issue I really had with my surgery was the back of my head was numb. Some of my scalp nerves got damaged apparently. Even now there’s a bit of that but mostly it’s better. The shunt surgery was worse for me, I was really sick (nauseous and vomiting) for days afterwards. They had no idea why, they said maybe my brain was not adjusted to a new, normal pressure. That part I hope I never go through again. 😉
I’m so glad you found help and I hope you’ll keep me updated on how things go.
Best of luck!
Anita
Lill a, please could you let know the three surgeons who perform the same endoscopic pro desire as the skull base institute in the uk. My son has a recurrent pineal germinoma that he is having high dose chemo with stem cell transplant for at hammersmith hospital, this is the first of two high dose treatments but this one has landed him in Intensive care for 11 days. If this doesn’t work it most probably means that the remining tumour is now a mature teratoma and the only option will be surgery (if we can find a surgeon willing to carry out the surgery). We would have to fundraise if we needed to take him to the USA for treatment, but it seems like they are experienced in this type of surgery at the skull base institute. Being so seriously Ill after this bout of high dose chemo we don’t know whether he can do this a second time around. It is awful to see what he has gone through.
Hi Suzanne, I just saw your email and had completely forgotten about this site! So sorry to hear about your Son and my prayers and thoughts are with him and your family. I had surgery at the end of October but in the end it was an emergency because I had hydrocephalus. I had a 3rd ventriculotomy and at the same time they popped my cyst but did not remove it. It has taken me a long time to recover and only started feeling good again in the last 2 weeks! My surgery was in Bristol at Frenchay Hospital and my surgeon was Mr Ian Pople who was very good and would recommend. He operated on me endoscopically which was brilliant – I don’t know if he can help your son but if there is anything else I can help you with just let me know!
Did anyone have problems with their eyes and how long did it take to recuperate ?
My son’s pineal tumour was diagnosed because of his problem with double vision, he underwent a biopsy and subsequently chemotherapy and stereotactic radiotherapy from October 2010 to April 2011. His vision has not yet gone back to normal and the doctors dont know if it will. The way they described it to us in simple terms was like if you put an indentation in a sponge it will spring back but if you put an indentation into a piece of plasticine it wont. It could take up to 2 years to improve. His opthamologist has said that there is a slight improvement but not noticeable to my son. Unfortunately his vision has been getting worse in the last couple of weeks and he is suffering from more headaches as well which is worrying us. THankfully he has an MRI scan next week so we have our fingers crossed that everything is ok. Have you had the same problems with your eyes?
Hi Suzanne, my sister had her surgery in oct 2011. Her vision is still blurry and gives her headaches is doing eye therapy 2a week hard exercises…. She still not herself she’s a little child like and has to get out a magnifing glass to read stuff… My mother has to take care of her… The eye specialists said she will get her vision back . So I’m just going to meditate on that … She will see again…..it worries me that she always has bad headaches…I hope your soon eyes get better and his headaches will also go away…and my fingers are crossed…take care they will get through this and so will we…….
Hi.I was operated 3 terrain from pineal tumor and since then my level of energy thru out the day is various god lower then before the operation.I’m from Europe.I found a synthetic melatonin,hormone of the pineal gland in USA.Have you or anyone you know consumed synthetic melatonin and was it helpful?
I haven’t tried it but I keep telling myself I should. My hours are so screwed up it isn’t funny.
My wife has this tumor.. she has had it for as far back as i can remember.. its been rough.. along with my job.. my 3 kids.. the house.. money.. and daily tasks at hand.. my wife daily struggles to do her part in helping me to “keep the ship afloat” I’ve even considered quiting my job.. to be enabled to be there for her and my kids.. now if only I could aford to do that!.. family and church has now come in to assist us.. thank God! for My wife passes out on ocassion..(she cannot be left alone with my kids) she throws up daily.. she has sever head pain.. non-stop head pains actually.. just to name a few of her many issues.. honestly.. its been a daily battle.. just for us to keep her pain under control.. doctors.. hospitals.. churchs.. we have truly done it all.!!. even radiation..and “prayers with anointings with oils before the church and the elders”.. nothing has been able to cure her.. for we have truly done it all!.. it just keeps growing back.. also insurance has been a huge issue for us.. we even flew all the way out to “the skull base institute” in California. with high hopes!!. this was it!!.. healings at long last!! or So we thought!! The doctor down there had the issue and cure nailed!!.. he was confident and ready! it was all set!!.. then guess what happened next?? My insurance refused to pay!!.. what a suprise this was!!.. a complete wasted trip!!.. thousands of dollars later!.. just a heads up for you all!!.. check with your insurance.. before your flight!! yes.. Our appointment was all set up and autherised by our primary beforehand.. it didn’t matter.. my insurance still refused to pay.. so then when we went to see the doctors in town.. To set up my wifes surgery for the tumors removal..(with the doctors that they actually had aproved for us).. they wouldnt do it eather.. they said it was by far.. way to risky.. the only hope that remians now for us.. in my eyes.. is now.. simply put..”I need God to intervene”.. so therefore..”we wait upon the lord in faith”.. Oww.. by the way.. doctors have given my wife about a year to live.. but yet.. my hope remains.. to be in God.. not man.
Hi Jason,
I’m sorry your wife is having such a horrible time. I went to Duke with nothing more than Medicare. That surgery was over $40k and my share was supposed to be maybe 20%? I never got billed for that much. But it is a learning hospital, I guess they just let some slide.
That’s terrible they you didn’t find out your insurance wouldn’t cover it until you got there. What the heck were they thinking? There were people in my home city who could have at least done my shunt surgery but they didn’t, they sent me to a renowned brain surgeon.
Why are they saying she only has a year to live? It would be pretty hard to die from a pineal tumor I think, unless there is hydrocephalus, and surely insurance would cover a surgery like that. They don’t even have to go in deep to put that in. I hope she finds some help somewhere, no one should have to suffer like that.
My brother too had germinoma. He is 22. After radiation anmd chemo his tumor gone. But 1 yr. later tumor cells seeds via vp shunt to his lungs and abdominal. He under medical check-up now. But I am giving him Ayurveda medicine. He is doing well. He also go through Chemo after check-up. I am from India. You also don’t take chance. You should also take the Ayurveda medicine. It is very good. More than 500 people are cured by this. You can mail me any time. My id Is Prakashh108@gmail.com. All the best.
Hello! My name is Glenda. I don’t really have any questions, I just wanted to share that my 20 year old also had a pineal tumor. His was discovered in October 2011. He had hydrocephalus and they were able to remove the CFS without putting in a shunt. His doctor was able to remove most of the tumor. We found out in later he had germinoma cancer. He had 29 sessions of radiation. So far he is doing good. He lost his hair since the radiation was on his head and spine. The dr. explained because germinomas can seed they would have to perform radiation on a larger section of his body. He still has double vision and that is something the drs will deal with later. He is doing well and no signs of the cancer.
Hi Glenda,
Yours is the first one I’ve heard of that was cancer (although I know some are). I’m glad to hear they see no signs of cancer now. I hope it stays that way! That had to be very tough. I’m glad it was me and not my kids.
Best wishes to you and your son.
Anita
sliloh recently posted..Who are the thugs, anyway?
My brother too had germinoma. He is 22. After radiation anmd chemo his tumor gone. But 1 yr. later tumor cells seeds via vp shunt to his lungs and abdominal. He under medical check-up now. But I am giving him Ayurveda medicine. He is doing well. He also go through Chemo after check-up. I am from India. You also don’t take chance. You should also take the Ayurveda medicine. It is very good. You can mail me any time. My id Is Prakashh108@gmail.com. All the best.
Hello friends…
Just had the MRI for the yearly check, and the eye exam as well. Still no change, so I’ve decided to declar this tumor DEAD, and treat it as such. It has basically led me around for the last two years and I turned something of a corner on Tuesday…I’ve decided to not think about it unless I have to from here on out. My eye exam came back perfect…you can’t do much better than perfect. 🙂 Anyway, if the carcass of this stupid thing wants to sit up there in my brain, then I’ll drag it’s sorry butt around as a warning to anything that tries to take me down! It’s like a severed head on a stick in old Medieval days! Grrrrr….!!
Go Gamma!! And I thank God daily for greater minds than mine. Someone figured out how to handle these things and I’m still trying to figure out how to set the clock on my tv.
All love and good, healing wishes to all who post here or read this wonderful blog.
Rochelle
Yay Rochelle!
I consider mine dead too although I skipped my MRI the last 2 years so I might get one this year just to check. I have about 8mm left and was under the impression it was growing very slowly. I think it took years to get to it’s previous monster size so I’m not really worrying about it.
I thank God for them too, I couldn’t even figure out how to open my new cell phone. 😀
So glad things are going great!
Anita
Hi Everybody
After a year I discover this page – wish I had seen it sooner.
My son was diagnosed with malignant pineal blastoma last year. Had it surgically removed, has gone for MRI’s and radiation and is currently in remission.
I’m going to post his story as soon as I have time to sit down and give all details. This is a very long and difficult road and surely not one to walk alone.
Marga
No it isn’t one to walk alone. Just had a comment on this post from another woman whose son has a malignant one. Maybe you could talk to her about where and how your son was treated. Look up above for Suzanne.
I’ll keep him in my prayers that he stays free of it.
Anita
sliloh recently posted..Who are the thugs, anyway?
Been a long time, but Ive been thinking of you people here. I do have some perhaps good news about the daughter of my brother’s sister-in-law. The diagnosis was odd, it was a strange form of Spina Bifida which is causing her problems. The formation of the base of the skull area of the spine was suspected, thats where the swelling and fluid problems were first discovered. She is doing better, but still has spells of almost fainting(still does not dare drive), but seems that the spells are further apart and less severe. Headaches are still there, but subsiding slightly. The doctors have put her on a wait and observe situation as long as she seems to be able to deal with it. As long as its slowly improving they would rather not do anything such as surgery. She does feel better and is managing her life a lot better, her fiance is a godsend, he does everything when she is not feeling well.
Jane
23-08-2012
hi siloh,
it was 19th june 2012, when we knew that my brother has brain tumor in pineal gland.first drain surgery has been done sucessfully. now, after doing the MRI again, doctors found that the size of the tumor has increased from 2*2.3 to 3.5*2.5. doctors has’nt yet decided whether to do surgery or to apply chemo therapy to cure this tumor. i would like to know your opinion on this matter. today doctor told me that the tumor is pineoblastoma. they decided for radio therapy instead of surgery. please reply me.
Best of luck to your brother. I don’t really have an opinion with any knowledge behind it. I think if radio therapy works that’s definitely better than surgery. They considered that with me, but they wanted a biopsy first. I thought if they were going in there they should just try to get it out. I hope they have have success with your brother!
august 27-2012
thanks Anita.. doctors reffered my brother to radio therapy department. now they are waiting for spinal MRI report. after it, they will start therapy. My brother has no vision problem, but little sounding problem. he also sleep upto 15 hrs. we are hping for the best.
My first question is, now that you no longer have a Pineal gland, how is your eating/sleeping effected? The pineal gland is where melatonin and serotonin is produced which regulates these things. Also have you gained a lot of weight or had bouts of depression? The Pineal gland regulates the endocrine system which deals with thyroids and an entire host of bodily functions. I have to assume that you are taking drugs consistently to regulate your body because without your pineal gland your body would no longer regulate itself.
My second question is, Can you still “Trip?”. By that I mean, experience psychedelic feelings including but not limited to euphoria. It is hypothesized that without a pineal gland you would no longer feel pleasure from a sexual climax. Your body would also no longer produce the “flight or fright” feelings that naturally help us during the most stressful times in our lives. Do you believe that your pleasure/reward pathways in your brain are still functioning the same?
Last Question, Have you gone back to see if your pineal gland recreated itself. Because the pineal gland is so important to life, and it is required to live a normal life, it is the only part of our brain that is not made from normal brain tissue and can repair itself better than any other part of the body because of its location it gets the best nutrients, best blood, and there are defense systems in the brain that carry away toxins and waste from that site before any other.
Renee Descartes the man who said, “I think therefore I am” called the pineal gland the seat of the soul. It is the first thing to be created in a fetus at the same time that the sex can be determined. It is the center of every major theology. Its one of the least studied parts of the brain, yet seemingly the most important. I am very interested in your answers.
Hi Jason,
As for eating, I don’t really eat much. Sleeping is a bit different, I guess I could say I don’t do that much either. My days tend to be 30 hours or longer, which makes keeping any kind of routine a problem. I was very sick after my first surgery (for the shunt) and was skeletal when I left the hospital. I have gained some back but I still weigh less than I did when I graduated high school (iow, I’d still be considered underweight). I had depression before they found my tumor. Who knows if it’s related. It was so encased in tumor that the dr said it probably hadn’t functioned for years. My body does manage to regulate itself for the most part and no, I am not taking anything. Sometimes I consider trying melatonin.
Yes, I think the pleasure reward pathways are just fine. My sexual climaxes are working just the way they should 😉 and when someone tried to break in my house one night I can assure you I had the fight/flight feeling going for me.
I’ve had regular mri’s to see what the remaining bit of tumor is doing, it was adhered to my hypothalamus and couldn’t be completely removed. And no, there is no new pineal gland in there.
Basically, I’ve found nothing about myself has changed except possibly my circadian rhythm. To me that’s not really a totally big deal. I still get depressed, but that has been an issue most of my life. I still get migraines.. but life goes on 😉
I’ve read a lot about the pineal gland since my tumor and it is a wonderful romantic notion that it has all that power in our lives but I haven’t experienced any especially awful things for having mine missing 😉
Anita
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Hi, its been a long time since I posted on here, but have come back to let you know that my son Steven had surgery in Los Angeles – Thousand Oaks Surgical Hospital by Dr. Shahinian, a brilliant surgeon who performed the operation endoscopically. He removed 2.7cm of tumour which was the size of the tumour on the last MRI scan Steven had and pathology results showed that the tumour was “dead” no active remaining cancer cells. He gave us back our son, what a wonderful Christmas present that was for us all. In the UK he was told my his neurosurgeon that the operation was not possible, to operate would either kill him or severely disable him and he was sent home with a death sentence, needless to say this arrogant man has not seen fit to comment on the successful surgery performed by Dr. Shahinian, obviously a much a much more confident and experienced surgeon than he will ever be. We were given a tentative date for surgery of the 28th November and had three months in which to fundraise £100,000. We managed to raise £40,000 of that and because surgery was now an urgency we borrowed the remaining £60,000 to ensure that we could keep that surgery date. If anyone is interested Stevens full story of his brain tumour battle can be read on his fundraising website http://www.stevensfightingfund.co.uk. Thank you to everyone on here who helped and supported us during this battle to get Steven well again. x
I am so glad to hear things turned out well! I sent you a small donation, I hope it helps some!
Best wishes to you all 😉
Anita
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THank you so much for the donation Anita, that was so kind of you. xx