back                                                                                                                         Updated August 25, 2004

Aug 25, Wed

Medical Update

Well, it’s now August and here I am again, dealing with the latest tumor-related developments. When I signed off last time (July) I was on my third round of steroids and hoping that would take care of any post-radiation swelling until the tumor settled down and went away. Not to be. Oh dear, it appears the game’s not over yet.

As I began to taper off the steroids, the same pattern emerged: worsening symptoms and an ever-increasing threat of hydrocephalus (water on the brain). About this time, my neurosurgeon looked at my recent MRI scans and decided it was time to talk in person about it. He had already planned to be away for two weeks for some symposia, so I had that short grace period to intensify my efforts at getting the swelling down with natural means. Of course, I went at it gung ho but alas, I continued to get worse.

This past Monday (8/16) Joe and I visited with my surgeon and had a frank discussion about my options. It’s clearly apparent that I have hydrocephalus and need to do something about it. My neurosurgeon put it in no uncertain terms: “You could go to bed tonight and wake up dead tomorrow.” Oh my. That got my attention. We debated how serious it all was and finally decided on a course of action: I would double the steroids for two more weeks to see if that helped, and if not, then I would allow him to put a shunt in my head. He seemed adamant that a shunt was inevitable but was willing to honor my wishes to exhaust all other options first.

So last week I doubled the steroids (Round Four – ugh!!) and got minimal relief, while my other symptoms just got worse. What were those symptoms? Well, I was now staggering everywhere, falling down whenever I bent over, had a numb lip and tongue, drooled, had spasms of choking where I couldn’t swallow or speak, had episodes of feeling like my head was inside a pressure cooker, experienced occasional headaches, was constantly dizzy, has blurry and/or unstable vision, occasionally had “fractured” vision followed by headaches (a very migraine-type symptom), constant fatigue, urinary incontinence, and a right leg that was always hot, cold, numb or weak. In addition, I was still dealing with all the steroid side effects, which I won’t go into.

It was so obvious to me that I had hydrocephalus that I decided not to wait the two weeks to get a shunt put in.  If I was going to do it anyway, why not just do it sooner than later and get it over with? So I am scheduled to have one more hole drilled in my skull this Friday (8/27) at 11:00 AM As much as I had hoped to avoid this step, it appears it’s another life-saving technique and I’ll have to do it if I intend to be around a bit longer!

For an excellent overview of what hydrocephalus is, what types of shunts they put in (I’m getting a Delta valve) and what the whole procedure entails, go to and read their excellent publication on it. Warning: it’s nicely written but the details may be a bit much if you’re squeamish. It involves surgical procedures, needles, hole drilling and the like, but it is written mostly with parents in mind of kids born with hydrocephalus so it’s not overly graphic. For just a general overview of CSF shunts, go to   -- I’m getting the V/P shunt.

So that’s the latest update. Joe will post my post-surgery outcomes this weekend if you want to check back to see how it went. I, of course, am totally optimistic of a positive outcome and a resolution of my symptoms, not mention an end to this saga and a return to some quality of life. Once the hydrocephalus is under control, I’m counting on the tumor finishing its swelling and then reducing in size. My neurosurgeon seems to think I’ve got another 6 months to a year before it’s all over, but he’s just guessing, as are any of us. I guess the blessings don’t stop here!

So stay tuned and we’ll be keeping you informed as we go. Thanks for all your love and support and continued positive vibes. I appreciate every prayer that comes my way!!




Note from Joe:  For those of you who may not have a PDF viewer (Acrobat) installed to look at the neurosurgery document, here is a link to Adobe's Acrobat Reader download site. It is a free download and simple automatic install.