From:"Sue Weiner" sue@weiner-family.net
Sent: March 30, 2008

My name is Sue and I am five months out from surgery. I still touch my scar daily to confirm that it actually happened. I had brain surgery. I woke up on Friday September 30th 2007, with double vision. My husband took me to a local ER. After a series of routine tests, they gave me a CAT scan that revealed what they thought were 3 bleeds in my brain. I was admitted to the hospital and was visited by an Oncologist who said I probably had brain cancer or an inoperable tumor. This was the single worst weekend of my life! Our small town hospital was ill equipped to diagnose me, thankfully I was transferred to Stanford hospital two days later.

At Stanford, I was admitted by a Neurologist who had read my MRI scan and confirmed my 8 bleeds! (I previously thought I had three) She also threw out Brain Infection and Multiple Sclerosis as more possibilities for me to dwell on. The doctors were kind of surprised that I was in such good condition... considering the appearance of my MRI.

I had multiple tests that week. In the meantime, the left side of my body went numb. You could poke me with a pin and I couldn't feel it. I couldn't feel heat or cold either. Towards the end of the week, I was visited by a Dr. Steinberg, I knew his name and reputation, so when he made a
surprise visit, everyone in the room fell silent. He said I had multiple lesions, but the one of concern was in my Pons or Brainstem. He called it a Cavernous Malformation and wanted me to go home and "de-swell" so he could re- evaluate my lesions accessibility for surgery. Before checking out, I was visited by another wonderful Neurologist who told me Dr. Steinberg would not operate on me unless he knew I would pull through. My new focus was on the location of my lesion. I wanted it to be accessible!

I spent the next two weeks "de-swelling" My follow up MRI confirmed that the lesion was accessible. I never thought I would be so happy to have an operable brain lesion! The procedure was scheduled for two days later. His office was kindly trying to accommodate a Disneyland trip we had previously scheduled for our kids, prior to this crisis. I envisioned the commercial..."Sue, you just had brain surgery, what are you going to do? I'm going to Disneyland!

Surgery day came, and I was surprisingly calm. I was in surgery 6 hours. I woke up in my room and heard the good news. They had got it all. Then I pretended that I didn't recognize my husband ( how often do you get to play with someone like that). The next 24 hours were spent trying to stay ahead of the pain. I was out in four days for good behavior, which meant I walked the halls a lot and took my medication orally instead of intravenously. I won't say it was easy. When I got home, I had plenty of meltdowns. All the pain medication and Steroids messed with my moods. I cried because I didn't have Poptarts! After a few weeks, I started to feel more like myself. Two and a half weeks after my surgery, we did go to Disneyland. I had a wheel chair, an eye patch, and a neck brace. You basic train wreck! I was told NO rides by my neurologist, so I only went on three. When home a few weeks, I was fitted for some prism glasses and five weeks after surgery I was driving my kids to school again.

It's been over five months since surgery. The sensation in my left side returned. My energy is back and I feel almost "normal". My vision is still doubled, it could take a year to eighteen months to come back, if at all. I still have seven remaining bleeds. One remains in my stem, with a very small chance of ever bleeding. I feel very fortunate to have had the procedure. For me, the worst part of the entire ordeal was not the surgery or recovery or any amount of pain. I was the fear and uncertainty I saw in my kids eyes.

There you go...My "brain" story. I hope this is the end, and there are no sequels!

Sue Weiner
California