40 Responses to “Pineal Gland Tumor”

  1. Lee says:

    OMG you are so brave! Thanks for sharing!

  2. Carol says:

    Even though I find this white on black hard to read, I really enjoyed reading your story. My spouse and my daughter are both Neurosurgeons in Wisconsin. So, Ive heard many stories and yours is very well written, and timely. I hope you have had a full recovery and a normal life.
    Carol

  3. sliloh says:

    Thanks Lee and Carol.

    Carol, that is wonderful that you have two Neurosurgeons in your family! ๐Ÿ˜‰

  4. Sandy says:

    Thank you for sharing this sensitive time in your life with us. You are so courageous and surely a true inspiration for others who will read this page and maybe be experiencing similar issues.

  5. Faye says:

    Sliloh:

    We just found out that a very good friend of ours has a pineal gland tumor and we are trying to get him into a surgeon tomorrow. He doesn’t have insurance so it is a struggle. I called the Southwestern University Medical Center here in Ft. Worth/Dallas and they have his information so hopefully we will get an appointment tomorrow. I am really scared…he is a single father. He plays in a over 40 softball league and is never sick. This has happened so sudden and I have no idea what is going to happen. I am reading everything I can on the internet and that is how I found your website. I appreciate you sharing your story so that someone who is going through this can understand alittle better.
    I would really like it if you could give me some insight to what we might be in store for.

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  8. Anonymous says:

    What caused pineal gland tumor with hydrocephalus please? I need it for my research study. Thanks.

  9. sliloh says:

    The pineal gland is located next to 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 (called hydrocephalus). That’s what causes the hydrocephalus. Who knows what causes the tumor itself, there are different types
    * Pinealocytoma (“benign” pineal cell tumor)
    * Pineoblastoma (more aggressive pineal cell tumor)
    * Pineal germinoma ( aggressive primitive cell tumor growing in the pineal region)
    * Pineal teratomas (rare tumors of multiple cell types that grow in the pineal region)
    * Pineal Cysts (most often not treated, unless large enough to cause hydrocephalus or visual symptoms)

    If you are actually just wanting to know what causes brain tumors, the answer would be, who knows?

  10. […] engine traffic generated. Last session, I browbeat poor Anita in to changing the headline on a post on a brain tumorย to specifically identify the tumor but she started getting hits off that post soon after she […]

  11. majedah says:

    my son diagnosed today with pineal tumor we live in saudia arabia helpe me to fined good center out side my country please

    • jgh says:

      Dr richard ellenbogen
      harbor view hospital
      seattle washington usa
      university of washington

      World renowned

      Get fax send dr notes/ mri

      Excellent surgeon great bedside manners

  12. K.Mohan says:

    I was diagnosed with a tumour around my Pineal Gland a few months back. I had bouts of severe headaches, loss of vision and few bouts of vomitting. My doctor in India ( Dr.Raaj Kumar Deshpande) at Wockhardt Hospital in Bangalore was fanstastic. An emergency surgery was performed to reduce the pressure caused by Hydrocephalus. Thereafter the tumour was extricated in a month’s time through Craniotomy. I am doing ok and am six months post surgery. I’ll have to go through frequent MRIs (twice a year) and i am on anti convulsants.

    • sliloh says:

      I’m glad to hear it went well. I wonder why you are on anti-convulsants. I was only on those for a few days (less than a week after surgery). Also, I still have the terrible headaches so not sure they were related to the tumor.

  13. Dawn says:

    Sliloh, your posts have been inspirational, thank you.

    I’m 35 and was diagnosed with a pineal region tumor in December after a routine sight test. The tumor is thought to be slow growing as its quite large yet my brain seems to have had time to adapt and deal with the pressures put upon it, so had no really bad symptoms.

    I was my usual perky self, still in shock and denial I guess, as I felt fine when admitted the same day, the nursing staff were shocked as having seem my scans they were expecting me to have been wheeled onto the ward.

    4 days later I had a shunt fitted to ease the symptoms of hydrocephalus then a couple of weeks later I had this “Played with” after suffering an excruciating headache and experiencing numbness to my face and limbs, still have the headaches, but ot in the same league.

    I’m due to go in for surgery to remove the tumor in a couple of weeks. The surgeon hasn’t been able to give me any definite answers as to the type and grade of tumor it is, I’m having to wait for the samples hit the lab for that.

    My surgeon is the leading man in the area for this treatment, hes been active in this field for over 20 years but hasn’t seen many pineal region tumors and has operated on even less, why I couldn’t have a more common brain tumor I don’t know.

    I’m not just so worried about the actual surgery now, its more what comes after that scares me. Hes told me he wont take away any more than he can do safely, so I’m more than likely to be left with some, which means radio therapy, again that doesn’t worry me as much as not knowing how effective the radiotherapy is on my particular type of tumor.

    I’m normally a positive person and reading your posts has helped me remain that way, you’ve given me and so many others a reason to hope, something i didn’t have when first finding myself in this unknown.

    • sliloh says:

      Yeah, I think mine grew for years too and I really felt fine. Right, they can’t tell with certainty until they biopsy it. It may be uncommon but I think I’d choose this kind over most others! There are probably cancerous ones but no one I’ve ever talked to had one.

      They didn’t get all mine but did not do any radiotherapy. I have an MRI once a year to keep tabs on it. It’s so much smaller and growing very slowly it isn’t really a concern. The aftermath of my surgery was a snap. A lot of pain in my neck but I was sicker from the shunt surgery. Was out of the hospital in 4 days running around Durham. ๐Ÿ™‚

      I wish you the best of luck. Let me know how it goes.

      Anita

  14. Greg says:

    Hi,

    My wife was informed last week she has a pineal tumor and that short of surgery to get a biopsy they can’t tell what type of tumor it is. The surgeon at UVA has only done10 of these type procedures and he had to wait two to three weeks to have a conference with other surgeons to find out the best approach to get to the tumor. Well 10 times and isn’t sure how to get to it didn’t set well with me so we are in the process of finding someone who knows what they are doing. Her tumor is 2.3cm big and it has caused headaches that don’t go away and are constant and she is on a narcotic for that. She is dizzy all the time and she is becoming more forgetful all the time. The worse of it all is the waiting nobody seems to really be in a hurry to do anything and until you know what type tumor it is you just worry all the time. Most ,but not all the the time they are just benign growths that can be treated. I ask if anyone knows a good doctor and one that moves quickly to address these tumors please,please let me know.

    • sliloh says:

      Hi Greg,
      I wouldn’t want a surgeon who had only done 10 either. I contacted Duke online. Here is the link to their self-referral form: http://www.cancer.duke.edu/btc/modules/liaise/?form_id=5 They got back to me right away, had me send my MRI and got back to me quickly again. They were really great there, I highly recommend them. If you don’t get hydrocephalus there probably isn’t a rush, but from a patient viewpoint that can be tough.
      As far as headaches, I hope treatment helps but I wouldn’t count on it. I still get terrible ones. Wishing you and your wife the best of luck. Please let me know how things go.

      Anita

  15. Frank says:

    I’m so glad you posted. Thank you. You have inspired me. I was found out I had a pineal gland brain tumor about two weeks ago. Of course, when I first heard it, I thought it meant I was going to die. It doesn’t. I was relieved to hear how treatable it was. Much of the medical information I found that first day was thick but helpful. But your blog, and the mass of responses to it, was the most human, and therefore, the most calming.
    I’ve already had my first procedure, an endoscopy to create a small drain that will circumvent the tumor and that also gets a biopsy of it. We’re waiting for the results now. I’m hoping we can use radiation, because while the first surgery was very successful and I recovered pretty quickly (I was back home 4 days after the endoscopy) I would hate to have an open skull surgery. Yikes.
    I decided to keep a blog of my tumor experience as well because of how much it helped to read about it. I had no idea how much it would help to write about it. If anyone is interested, the address is thisthinginmyhead.blogspot.com
    .-= Frank´s last blog ..Home Again =-.

    • sliloh says:

      Hi Frank! I’m glad it was helpful reading here. There is a lot of information out there but not so much from the people actually experiencing it. I had no idea these posts would be my most popular, who knew it was so common.
      I really wasn’t that bothered by the open skull surgery but geez, to think if I had waited I could have possibly had another less intrusive option. I think it is helpful to write about it and it helps others facing the same thing who are probably plenty scared. Off to read your blog now! ๐Ÿ™‚

      Anita

  16. Dawn says:

    Hi

    Just an update

    I’m now 7 weeks post op and recovering well apart from an issue with my vision, now blurred but improving.

    My surgeon (the professor) was a star. Despite his 20years + experience I was only the 3rd pineal region tumor he had operated on, so by all accounts my 11 hour op had an audience as it was something not often seen. Following my op I was told that he had been able to remove 93-95% of my tumor.
    I have now had my 6 week follow up MRI scan, neither the professor or the radiologist could see any tumor, so its now looking like he was successful at removing it all. I cant begin to say what a relief this was, I left his office crying. I am very aware that it may come back and this may even be at higher grade which is scary.

    I’m taking it one day at a time, but for the time being I can see I have a future.

    I’m so glad I came across your site before my op, seeing the positive stories helps.

    Many thanks again

    Dawn

    • sliloh says:

      So glad to hear it all went well Dawn! 11 hours! I don’t think mine was anywhere near that long. Of course I have no idea actually. If it wasn’t cancerous I don’t think you need to worry about it coming back at a higher grade. That’s wonderful that they see no sign of it! You provided a learning experience you several people it sounds like. I’m very happy for you ๐Ÿ™‚

      Anita

  17. erin says:

    hi all
    my name is erin im 23 and have just found out i have a pineal gland tumor, so as you can tell im still in shock
    i was worried about my husband and baby but ready this has made me feel better and more at ease.
    thank you x

  18. Vanessa says:

    hi there,

    I’ve just been told that I have the same sort of tumor and your post helped me understand it a little bit better from another persons point of view who has experienced what I anticipate happening to me.

    Thankyou for your links, I’m about to embark on venturing through those!

    Cheers,
    Vanessa

  19. peter cadisch says:

    Hi – I live in the UK. Although not suffering from any symptoms, other than the odd slight sight effect when working late, a routine eye test referred me to a consultant opthalmologist who sent me on for a scan. This was in 1986 ! The scan showed up a pineal tumour and I was rushed the same day to a consultant brain surgeon.
    He offered immediate brain surgery, but at the last minute changed his mind that this would be extremely risky as the slightest “slip up” could effect one or two of my senses. He talked to a friendly oncologist at St. Thomas’s london hospital who took me on for radical radiotherapy.
    34 treatments of radiotherapy – half on the tumour and half all the way down my spine took two and a half months plus – I got very tired, and often felt quite sick, but I managed to stay the course, with MUCH personal dedication.
    Some 24 years on and I am still aok, albeit I have a very weak back.
    I am so greatfull to be alive and am so thankful to my consultant Mr. Timothy and God.
    If anyone wants to contact me then Id be happy to talk things through, as one “whos been there and got the tea shirt”

  20. Brad says:

    It’s amazing how similar our stories are. I’m a 31 year old male that learned during a routine eye exam at LensCrafters on a family vacation that I had a brain tumor. Needless to say I was in a good bit of shock. I was 31, a husband and father, and had been mostly healthy for the majority of my life. I was diagnosed with a tumor at the end of February. The December prior (2010) I was diagnosed with major depressive disorder. About 6 months prior to that, I started having episodes of depression to which I was going to counseling. For approximately 5 years prior to being diagnosed, I had headaches similar to migraines. I had been told that the headaches were caused by “the wrong type of pillows” or “an old mattress”. What was actually happening was the hydrocephalus was causing a pressure buildup in my head, which was causing the headaches, the depression, my lack of balance, and a reduced ability to walk normally. The tumor itself is located such that it is causing double vision (the reason for my visit to lenscrafters). Eight days after being diagnosed with the tumor, I had a shunt installed at Portsmouth Naval Hospital in Portsmouth, VA. With the shunt installed, my neurosurgeon, my wife and I went about planning how to deal with the tumor. My neurosurgeon did not feel comfortable removing the tumor or taking a biopsy based on the location. Being that my doctor studied at Duke, he recommended us going there to have the biopsy/removal/treatment done.

    With all that being said, I will be going down to Duke next week and Dr. Friedman will be removing as much of my tumor as possible. He seems very positive that he will be able to remove most of it.

    I just wanted to thank you so much for sharing your story. It provided an ample amount of motivation and courage to me and my family that we can make it through this and that we will come out on the other side shining. Again, thank you so much for sharing. Your story is an inspiration.

    Brad

    • sliloh says:

      I wish you the best of luck Brad! You are in good hands with Dr Friedman, that man is still my hero. ๐Ÿ˜‰

      I know it’s such an unexpected turn in life isn’t it? It’s good to know you can come out on the other side of it and have a normal life.

      Anita

  21. Vickie says:

    Hello my name is Vickie I just found out this april 12 2011, while watching TV with my family; Iwent home 20 minute later my head was hurting so bad,I called the advise nurse. So I went to the doctor the next day with strong headace so bad i was jumping from thetable in front of my doctor,, whole their with doctor. She order of CT Scan it showed a 6mm somthing their the doctors dont know for a second look a MRI was order it showed the (Same 6mm) Somthing the doctor dont know what going on i was tha it is to small to do a bisopy,, May 31 i saw a Neuor sugeryen he want do MRI every 3 month saying that not a emergency to do anything @ the moment . But my head hurts all day every day. I am very very Scare and dont know what to do .I am a Mother of 5 grow Kids Husband of 26years And GRandmother of three Granson.

    • sliloh says:

      Hi Vickie,
      If you had hydrocephalus from it that would show in the mri, and that could certainly cause headaches, so I’m assuming that’s not the problem. I know it can be very scary. The only thing I can think to do is get a 2nd opinion. The headaches may be totally unrelated but then having something growing in your head that shouldn’t be seems like it could cause headaches. I hope they figure something out!

  22. girlygirl says:

    I am 38 years old and was diagnosed with a Pineal Brain Tumor on August 1st, 2011. I was in the hospital for 10 days with vertigo and vomiting. The vertigo is gone but I have dizziness and balance issues. They decided it was too risky to remove even tho it is 2.3 cm. I go in next week for the plan of action. I am more afraid of losing my hair, because I am involved in the Entertainment Industry. Please tell me about radiation, natural remedy, or anything else. Really frightened!

  23. Jenny says:

    Hi! I had my pineal gland actually removed 9 years ago to a cyst that (long story) was attached to it… Have you had any issues with sleeping since I assume your pineal gland isn’t working as it should?

    • sliloh says:

      My sleep was messed up long before I had my pineal gland removed. But then the dr told me it probably hadn’t worked for years being encased in tumor. Some people have suggested trying melatonin but these screwy hours work well enough for me. ๐Ÿ˜‰
      sliloh recently posted..Who are the thugs, anyway?My Profile

  24. Viridian says:

    Hi Sliloh! I bookmarked your site a couple of weeks ago (it hurts my eyes to spend much time online), read 1/2 the posts and was really intrigued by all the info, so I came back tonight to finish. I noticed that most of the msgs. were pretty old and I was a little bummed thinking this was old info going to nowhere-so I was so pleased to see you’re still posting! I have questions, but 1st a little background on me. I’m female, 40 and live around 30 min. from your beloved Dr. Friedman : ) My life was pretty darn normal up until 14 yrs ago when out of nowhere I got what I thought was a sinus headache from hell. After no relief, my dr. sent me to a neurosurgeon who found on the mri my large pineal cyst. They also found I have a chiari malformation. Both involve the spinal fluid flow-the chiari being at the base of the skull. My cyst is big but stable, so we’ve opted to this point to manage my pain with rx and try to control the pressure with other rx. I also have major sleep issues and though grateful for medication, it only lessons not alleviates the pain. I regularly debate surgery outcome benefits vs. risks versus non-invasive control techniques and how much quality of life I am getting and my answers change regularly. I wondered how your headaches are now and what they feel are the reason for them? Any sleep tips to share? : ) I don’t wish this life on anybody, but I really appreciate the time you’ve taken with this blog, your honesty, and your optimistic attitude. Thanks!

    • Anita says:

      Yeah, those posts were written a few years ago, but there doesn’t seem to be much of anywhere for people to actually talk with other people who have the same problem, which is a shame. So I hope it gives hope and encouragement to folks. It can be pretty scary when you find out what you have growing in your brain.

      I haven’t heard of controlling pressure via drugs. You have a double whammy with both those problems. I don’t know that surgery changed my quality of life much. Once I had my shunt I was fine, except… my tumor was growing and was affecting my upward gaze and who knew what would happen if I didn’t deal with it. I had migraines before surgery and I still have them so I assume they have nothing to do with my tumor, but I had hoped that would take care of them. I get Basilar Migraines which made me think they could be related (that and the fact that a lot of people commenting here complain of headaches) but whether it is or not, I have found a med that works for them. As for the sleep, if I don’t attempt to live on a 24 hour day I’m fine. My days are more like 30 hours and I often don’t sleep 8. I live alone and what work I do, I do from home (web development). It’s more of a problem when my kids come visit and expect me to sleep and wake on their schedule. ๐Ÿ˜‰

      I have things that do affect my quality of life (migraines being one of the biggies) so I do understand, and if they had a surgery to fix those, I’d jump at it.
      Being so close to Dr Friedman I’d suggest trying for a second opinion from him. Couldn’t hurt!
      There is good and more recent info here (thanks to my commenters) and I hope it helps folks.
      Best of luck to you!
      Anita

  25. Cindy says:

    Thank you to you for this place to read about pineal tumours. I first was told I had a growth in this gland almost two years ago but the Dr.”wasn’t concerned”. What? So I went away a bit scared, and feeling dismissed. He said that it was most likely nothing to worry about. So now it has grown, I feel worse and I have to go to the same guy again today. How I hope he takes this seriously and investigates the growth and treatment from here. Reading everyone’s input here has encouraged me so much and has helped me to know what questions to ask. thank you for this place.

  26. Barbara Wade says:

    My husband is 80, and has been diagnosed with a pineal growth occluding the drainage duct. He had headaches for 3 months. When his lucidity altered drastically, MRI showed a mass of cells, blocking drainage from the pineal gland, that looked exactly like those in his left lung. A lung biopsy showed them to be stage 4 cancer. He hadn’t smoked for 25 years, but, before that, was a pack and a half per day smoker for over 30 years. Otherwise, all his blood work, internal organs, are healthy (ten years ago, we stopped eating meat, processed or fast foods, dairy, sugar and salt). We eat mostly fruits and vegetables. A combination of steroids and radiation to the site, is present treatment. He is awfully weak and has no appetite, but I am certain he will overcome this. There has been talk of a shunt, but his headaches are gone, so if scans show reduction in tumor size, I see no reason. God bless all of you brave souls who are fighting the good fight. May you be successful. You ARE what you ingest.

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