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comparing hospitals for frontal lobe surgery

My daughter is 27 years old, has had intractable epilepsy for 7 years and has recently been determined to be a candidate for brain surger. I just read the article "The Bell Curve: What happens when patients find out how good their doctors really are?" from The New Yorker, 12/6/04, in which it was suggested that hospitals should be compared to each other in their success rates in different specialties and that the public should have access to these findings. We will be having a meeting in 10 days with her epileptologist to discuss the proposal for surgery (most likely right frontal lobe). I want to do the best I can to determine how that hospital compares to other hospitals in the country for this kind of surgery. I don't know how to go about that. Does anyone have any suggestions as to: 1) what I should ask her doctor, 2) what I can ask of the hospital as far as their internal review of outcomes for this kind of surgery 3) and what other ways I can get the results of findings of organizations, comparing hospitals, with this surgery and the follow-up to it. 4) anything else to look into I know that The US News and World Report article found Hopkins to be the #1 hospital overall and #2 in neurology and neurosurgery, but I would hope to find results of studies more specific to frontal lobe surgery for epilepsy. thanks a lot, Pete Bloom

Comments

Re: comparing hospitals for frontal lobe surgery

I don't think these comparisons are national yet but they are present at the state level in some places. However, usually the things that are tracked are general infection rates and mortality (always important!). They are usually overall numbers or for procedures that are done at high volume. I doubt that you will find specific rates for epilepsy surgery. They just aren't done frequently enough. However, ask the surgical team what their rate of complications is, and ask to speak to other people who have had surgery at that institution. That can be most enlightening for information such as the availability of doctor, how informed people were beforehand, how satisfied, or not, they were with the care they received, etc.

When you read any survey results, look at the questions asked and the comparisons made. What administrators, policymakers and insurers want to know is often different than what patients and families want to know!

Good luck,

Epi_help

Re: comparing hospitals for frontal lobe surgery

I'm in the same boat as you, my son is 26 and has been evaluated and advised that he too may be a candidate for frontal lobe surgery. His seizures are on the left. My son's Epilepsy Specialist in our city recommended Mayo Clinic. He indicated that the invasive mapping surgery and the lobectomy surgery is done quite often. We are going for a consultation in May. The doctor also recommended Cleveland Clinic as they specialize in this surgery also. My son has been suffering with Epilepsy for 8 years from a brain injury that lead to surgery and removal of a hematoma. The scar tissue from the surgery has caused his seizures and they are getting uncontrollable.

I wanted to know all of the details of the intrusive mapping surgery, how long it took, what were the risks, why it was important, etc. Bottom line, depends on the person and location of the starting point of the seizure.

I also asked him if there was some sort of support group that Matt could attend to find someone face-to-face who's gone thru the surgery, etc. There is such a group at our city's medical center and we plan on attending the next meeting. It's only held once a month.

So anyway, I sincerely empathize with you. I know Matt's doctor was stressed by the number of questions I threw at him. I explained that this is my child and I need all of the details before he makes this important decision. I flat out asked him if this were his child, where would he take him? He said Mayo. He did practice there and commented so, but felt they had much experience in this type of surgery. I don't feel comfortable letting him undergo this surgery at our local medical center. They do perform this surgery, but certainly not as much as Mayo Clinic. So my philsophy tells me, when in doubt, don't. If my son truly is a candidate for the surgeries, I want him to go to a place where the procedure is nearly routine.

If there is anyone who has gone through the mapping surgery and the lobecotomy in the left frontal lobe area, I would so appreciate hearing your comments and details of your recovery.

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