“There’s something there.” Those were the words said to me by a doctor in the E.R. in 1999 after a CT scan. I went in because even though I felt fine, I had this strange feeling when I was walking that I was listing to the right. Very weird. They then ordered an MRI and told me I had a brain tumor and hydrocephalus. I was admitted for however long it took to arrange an ambulance to take me to Henry Ford Hospital for surgery. That entire time is pretty hazy to me. Probably because I told them I was highly claustrophobic so they gave me some really awesome sedative for the MRI (which I don’t even remember having).
At Henry Ford they explained that they’d be inserting a shunt in to drain the fluid on my brain. They said mine was a pineal gland tumor and was large enough that it blocked the drainage duct for cerebral spinal fluid. No more nice smooth skull for me, I now sport a large lump on the right. It wasn’t really explained to me until afterwards when I hurt all over that they actually ram a rod down under your skin to make a path for the tube, which they ran from the shunt, down my neck, under my breast, and attached it into my abdomen next to my navel . I can still feel it when I stretch and for a long time you could see it because I was so skinny. That was because I was really sick afterwards. Could not stop vomiting. The doctors had no idea why, but suggested that it was because my brain was unused to a normal pressure.
I healed and life went on with MRIs every six months. However the tumor was growing so something needed to be done. Back at Henry Ford they said they wouldn’t operate but they did want to go in there and take a biopsy. They also wanted me to go down there 6 days a week for radiation, which I just had no way to accomplish. So a friend on my tumor group gave me a web address for Duke University Brain Tumor Center. I contacted them via the web form and one of the doctors called me the next day, told me to send my MRI and they’d take a look. A few days later they called and said “We think it can and should come out.” So April 7th, 2003 off to Duke I go! The surgery took about 4 hours and I was under the impression for a couple of days that they had gotten the whole tumor. They didn’t, it’s attached to my hypothalamus and if they had tried scraping it off I’d have ended up with brain damage. It wasn’t that bad, much better than my first surgery! I was out of the hospital in 4 days and home in a week. Tumor size reduced from 4.6 cm to about 6mm! The surgeon called me on Easter Sunday to tell me it was “The best kind of benign it could be.” And then gave me this hugely long name that I can’t remember or spell.
I have now graduated to MRIs once a year and yes, it’s growing again. However, I think I had it growing for years before I had symptoms, so I believe that I’ll probably die from old age before it becomes an issue again. Here’s hoping anyway!
The whole reason for this post was because I saw my Surgeon’s name mentioned on the news. Allan H. Friedman, MD is the one who just operated on Ted Kennedy. My experience with the staff at Duke was amazing. I’m like most people, not real fond of hospitals, but they were so caring and compassionate.
I gave Dr Friedman a picture I made (being a fledgling Poser user at the time), but I waited until after surgery to give it to him. I didn’t want him to think of it and start laughing right in the middle of things 
That man is my hero.
Edited to add links to a couple of my other blog posts
What is a Pineal Gland Tumor?
OMG you are so brave! Thanks for sharing!
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
Thanks Lee and Carol.
Carol, that is wonderful that you have two Neurosurgeons in your family!
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.
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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What caused pineal gland tumor with hydrocephalus please? I need it for my research study. Thanks.
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?
[...] engine traffic generated. Last session, I browbeat poor Anita in to changing the headline on a post on a brain tumor to specifically identify the tumor but she started getting hits off that post soon after she [...]
my son diagnosed today with pineal tumor we live in saudia arabia helpe me to fined good center out side my country please
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.
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.
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.
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.
I wish you the best of luck. Let me know how it goes.
Anita
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.
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
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
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!
Anita
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
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
Anita
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
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