surgery at 40

RE: RE: RE: RE: RE: surgery at 40

Submitted by BillM on Tue, 2004-12-07 - 01:55

Hi Lee, I'm baaaaack ;)The #5 that you asked about was, "how to choose an epilepsy center."I remember posting a message, with that title (closely paraphrased), on braintalk.org, asking for suggestions on what to consider. I got individual feedback from some of the folks there, based on their own experiences... not unlike the conversation we're having right now. I "spoke" with people who'd had surgery successfully, and some who hadn't... and learned what the procedure would be like. My list of questions for the doctors essentially was based on what I learned from other patients... "Can you confirm such-and-so", or "I heard x, is that right?"Ultimately, the facility selection had to be my choice... and, one that I'd be content to live with, long-term.One of my early realizations is that, for me, "my brain is my life." I'm one of the academically-gifted, "high-function" (in neurologist-speak) people; put me on a football field and I'll simply stand there and get knocked down, but give me a mental puzzle to solve and I'm in my element. "I think, therefore I am".Since this is, after all, my brain that they were going to (potentially) operate on... I decided I wanted "the best care I could get", for the same reason I get "the best-quality car I can get" and "the best-quality winter coat". Of course, "best" is, inherently, subjective... "best" to me may be "worst" to someone else... and, "best I can afford" fits in there, too, which leads to "best one that my health plan will cover."Based on my earlier medical experience, when I was living in the Boston area with several excellent teaching hospitals and Harvard Medical School nearby, I was predisposed to look to a teaching hospital; on average, they attract and develop... and, on average, they retain... the most up-to-date knowledge and technology. Most of the major epilepsy centers in the US... at least, most of the best-known ones... are associated with teaching hospitals. Next, I wanted to be sure the epileptologist who was in charge of my case was a real expert... both in doing the "pre-surgery evaluation" job, and in doing the "patient care" job. The other factor was... I learned that it is reasonably important (although perhaps not essential) to be evaluated at the same facility that's going to do the surgery. They know how to read and interpret their own staff's findings, summaries, and equipment idiosyncracies.I discussed my "short list" with my local neurologist (who was the one member of the practice with an epilepsy specialty); he gave me a few names to call. I also did some research on the Web... by going to the hospitals' Web sites and noticing the kind of research work they were doing, the background of their personnel, and the general "aura" (no pun intended!) that they emitted... kind of a "sniff test".Then I sent an email off to (the gentleman who would become) my doctor at Johns Hopkins (since email addresses for many of their staff are visible on their public web site); I could tell from the *way* he responded, that he and I would "get along". Now, that's not THE most important thing... but it counted for something... at least enough to get me to go there for an initial consultation. He also had a very impressive resume' ... and, I later learned, a family member with epilepsy, and therefore some personal motivation. During the initial consultation, while he was evaluating me, I was evaluating him. He passed the "bedside manner" test very easily. I walked away with confidence that this was, at the very least, a good place to get the evaluation done, and quite possibly a good place for surgery (if that was ever going to happen -- I carefully "reserved judgment" on the surgery until after the evaluation... it's much better to take this whole process step-by-step, 'cuz it's too easy to be overwhelmed).It was really only during the first round of VEEG monitoring that I became *fully* convinced I was in "the right place". The attentiveness of the EMU staff, and the way they dealt with the little "hiccups" that accompany most anything complicated, really made an impression.I didn't meet the surgeon until later. I came to view the neurosurgeon as the "mechanic" who works on my car; I want him to be technically superior, but I don't care all that much about his bedside manner (as long as he's truthful). The epileptologist, on the other hand, is like your car dealer's "service advisor"... the guy you describe all the symptoms to, including funny noises and smells ;)That turned out to be quite accurate; the neurosurgeon didn't have high "people skills". But that's OK, he knew what he was doing, and did it very well! I didn't need him to be my friend...I'm pleased to say that my epileptologist and I are now on a first-name basis. He *could* be a friend (and, occasionally as a result of things that happened during treatment, *acted like* one... but I digress).Does that help? (Please excuse my rambling!)In the Midwest... I've heard good things about MINCEP (in Minnesota), the Cleveland Clinic, and the Mayo clinic. There's also *some* value in things like the US News & World Report annual ranking of hospitals, which includes a neurology ranking... but, it ain't the Gospel; they don't report, in the 2004 issue, that Hopkins even *has* an epilepsy center, for some reason.