surgery at 40

RE: RE: RE: surgery at 40

Submitted by BillM on Sun, 2004-12-05 - 16:43

Lee, I'm sorry I didn't see this until today. (I've been getting too many "such-and-so-forum has updates" messages, and not keeping up with them all.)My surgery evaluation consisted of:1. Trying several medications, without *enduring* success. (I did go for 8 years, fully controlled, at one time, on medication... it was at that point that we began (what I fondly refer to as) "med roulette".) The usual periodic EEGs (with sometimes-conflicting, never-crystal-clear results) and MRIs (which were always perfectly normal).2. Recommendation by my local epilepsy-specializing neurologist to consider surgery.3. Picking myself up off the floor (that's a metaphor, there was no seizure actually involved)4. His recommendation to get evaluated by the specialists at a major epilepsy center, typically one associated with a research hospital.5. Investigating "how to choose an epilepsy center", since I had no prior experience... this was summer 2001.6. Researching the possibilities on my "short list" (which, for me, included MGH, Columbia, Cleveland Clinic, Thomas Jefferson, and Johns Hopkins). (Jefferson does not appear on most short-lists, but my local neuro had done his residency there... it was actually the first one I "voted off the island" ;) )7. Contacting MGH and Hopkins for initial appointments and consultations. They were my first-choices due to (a) personal knowledge of MGH from my time in Boston, and (b) geography (which matters... this is a long-term relationship). MGH dropped the ball, administratively, several times. I was pleasantly surprised to find that Hopkins is FULLY capable. Also, they're a participating provider in my PPO (another critical factor)8. Met with *my* doctor (OK, so I'm possessive!) ... at Hopkins and scheduled a video-EEG for October 2001. He answered my questions and gave me enough information that I could see that *initial evaluation* was non-threatening... non-invasive, just involved several days in bed on (what amounted to) a tether... nothing at all frightening. (OK, that "non-threatening" conclusion was BEFORE I had my first taste of hospital food ;) )9. Video EEG (VEEG) as scheduled... and, assertive person that I can be, I learned how to get something other than "chicken and zucchini"... and, how to get a roll-away bed that was less than 50 years old, for my wife (who stayed in the room with me). I exercised my advocacy skills, and also found that the staff at the epilepsy monitoring unit was absolutely superb. I had several seizures; the VEEG results were suggestive, but not conclusive. If I recall correctly, this was about a 5-day stay. Data suggested a right temporal focus, with the possibility of a second focus in the left frontal lobe. Got to watch a video of one of my own complex-partial seizures, which was fascinating.!10. Second round of VEEG, this time "invasive"... meaning, there was surgery to insert sensors... strips, about the size of your pinky, and very thin... inside the skull, floating above the brain. These are called "subdural electrodes". To insert these, they made incisions in the skin and bored four holes through my skull. (The use of strips was based on the location data from the first VEEG; some people need "grids", which are more two-dimensional... like a playing card... and which require cutting out a larger chunk of the skull, like the lid of a halloween pumpkin.) This was early February 2002. Surgery Thursday; left the hospital the following Wednesday, with a whopper headache, and my doctor's pager number.11. Neurology department conference -- conducted for (as I understand it) all surgery candidates -- at which all doctors at the epilepsy center review the case and the data, and make a recommendation. In the meantime, my doctor and I had discussed the VEEG data, which confirmed the right-temporal focus, and demonstrated that the left-frontal activity always *followed* the right-temporal... although very quickly. The decision was, "one lobe or both"... and my doctor, myself, and the conference team all came to the same independent conclusion: right-temporal first... if there's need to do any surgery on the left-frontal, we'll deal with that later.12. No seizures until mid-March... and that one was my last.13. Wada test in early April 2002... clearly showing that my right temporal lobe was counter-productive. With my left lobe "asleep", I did no better than random-guessing on the cognitive tests, and showed some left-side thrashing. With the right side "asleep", I was perfectly fine... that means the left side could, indeed, "take charge", and would probably be happier without the right side counter-manding it at every turn ;) This was described as a "textbook" Wada testSurgery in early May 2002, in on a Thursday, out Monday. I was surprised that the in-hospital turnaround time was that short... at a good facility, "brain surgery" isn't rocket science ;) Again, lots of headache pain. Back at work from home, part-time, on Tuesday; part-time at the office, the following week; full-time, by late May.I've been back for 6-month reviews, and an annual (scalp) EEG, at the epilepsy center since then. Keppra has been tapered back to bare-minimum dosage. So far, everything looks good... of course, epilepsy is one of those few conditions that can't be *conclusively* said to be "healed" until, well, death.But, I BELIEVE... which worked for the Red Sox! :)