“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?
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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.