Update: 11/8/06

Hello friends and family:

It’s hard to believe that a whole week has passed since Phil had his seizure. I’ve finally collected email addresses into a group list and will use this to send updates. We have really appreciated the love and support you have all expressed. Phil has read your emails whether sent to my email address or his (mine is checked more often), and he has been so touched by everyone’s caring, as have I.

For those of you who have not heard, Phil had a temporal lobe seizure on Friday night (the 10th) and was admitted to the local hospital with some strange and frightening symptoms (mental confusion, aphasia, and auditory hallucinations). His MRIs showed some abnormality in his left temporal lobe that could be the result of the seizure, viral encephalitis, or a benign tumor. He was released the next evening, and he and I have been home this week focusing on finding out what is happening and what to do about it. This may take weeks to diagnose properly, but the neurosurgeon has ruled out a malignant tumor. So that gives us some time to explore the problem with less invasive tests. He does not recommend a biopsy, at this time, because of the location of the abnormality.

For now, Phil is taking two anti-convulsants: Topamax and Keppra. On the Topamax alone, he continued to experience some auditory hallucinations that were really frightening for him. This is one of the symptoms of temporal lobe seizures. Fear and anxiety are also symptoms of this kind of seizure, so if the auditory hallucinations don’t scare the cr*p out of you, you’ll feel scared anyway. On Wed, then neurologist added the Keppra, and that has stopped the seizures completely. So he is no longer having the auditory hallucinations either. He’s not feeling as frightened or confused. The meds make him a little groggy at first and they can be agitating as well, so he becomes easily stressed and fatigued. Even so, he says he feels a lot better than he has since last Friday.

He has two doctors working on this, and we really like both of them. His neurologist, Joan Jensen has been wonderful. She has a great bedside manner and has known Phil for over 10 years, managing his migraines. So being with her is easy and comfortable. She is very collaborative and personable, and she’s very responsive. She did Phil’s lumbar puncture this morning and it went perfectly. He hasn’t had a headache or problems from it. We won’t have results from the spinal tap for a few days. It will rule out some nasty virus that we are already pretty sure he doesn’t have. But running tests somehow makes us feel better, well….if getting a spinal tap can make you feel better. J

Dr. Kokkino is Phil’s neurosurgeon. He’s terrific. Smart, personable, well-respected, connected to the right people, energetic and very interested in Phil’s case. He’s sending Phil’s MRI studies down to a specialist at the Brain Tumor Research Center at UCSF. According to Kokkino, UCSF has one of the best centers for brain tumor research in the country, and he knows a Dr. Berger there. Kokkino said that it would take about a week or so to get Dr. Berger’s interpretation of Phil’s MRIs, so we are in a wait-and-see mode.

Dr. Kokkino also talked about getting an MR-SPECT scan for Phil. That combined with the MRI studies they already have on Phil can help to diagnose a tumor. There are only two machines in the region, one at the University of Oregon, and one at The Brain Tumor Research Center at UC San Francisco. The machine at UO is not available to the general public, so we are not sure it will be available to us for this. We will have to wait and see.

Phil’s sister, Elizabeth, is here, and it has made such a difference to have her here. Her medical background and her presence has been a big help to us. My mother has been helping out from day one as well, bringing meds from the pharmacy, food from neighbors (thanks Leigh!), answering the phone, calling people, doing the dishes just being available. Both of Phil’s daughters have also come to see him and keep in touch daily. Additionally, the folks Phil and I work with have been incredibly supportive in so many ways. We have been awed and humbled by the love and caring we have received.

For right now, we are in a holding pattern, waiting for the results from the lumbar puncture and waiting to see if we can get another scan done locally. We are going to take the weekend to just rest from all the work this has been, and to enjoy some of our “normal” pleasures (watching DVDs, drinking tea, and whatever we feel like doing.) We are trying to follow the wise advice of my Buddhist neighbor, to “stay in the present.” It makes all the difference. We are just learning, day-by-day how to go through something like this. And we will keep learning. We are a pretty good team, and we are so glad to have each other.

Thank you, again, all of you. I am sorry if we have not gotten back to you, email or voicemail, as quickly as we would have liked. Hopefully, this email list will help to keep everyone more updated.

Love,
Elizabeth and Phil