Pineal Gland Tumor

“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? What is a Pineal Gland?