Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 If you had to look into surgery for epilepsy to remove a focal point, which hospital would you choose? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 sHopkins and Dr. Ben Carson.....We haven't had Dr. Carson but know people that sing his praises. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 , The diet was short lived. Since she was on Zonegran and the diet she started showing kidney problems, blood in the urine, increased protein excretion, large amounts of leukocytes, etc, etc. The day she was taken off the diet the neuro suggested I look into surgery so I am just kind of doing my homework right now. They started her back on Depakote and we are just at 250mg per day and already side affects are pouring in, tired all the time, whinny, visual problems, decreased concentration... As much as I hate the idea of having surgery, I want our life back to normal and this may be the only way I will achieve this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Thanks Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 You know, this really surprises me. I went to a epilepsy converence not too long ago and the speaker kept ranting about the University of Alabama at Birmingham. He said it was one of the best b/c of their advanced equipments, ie. MEG testing. But they did not even make the list? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Amy, Is that Rochester, MN? If you don't mind, let me know how things go and what they say. What type of seizures does Hunter have? Where do they originate etc? Thanks, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Tracey.. I've heard that top epilepsy surgery hospitals include Cleveland Clinic, UCLA, Yale, a hospital in Canada (I forget which), Miami Children's, Boston Children's, NYU Medical, 's Hopkins. Make sure that whoever you go with does a lot of frontal surgeries and not just temporal lobe. Many hospitals do temporal lobe surgeries, but extratemporal is a different specialty. > If you had to look into surgery for epilepsy to remove a focal point, which > hospital would you choose? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 My Son Hunter 2.5 is going into the hospital on Monday to do the 24hr. eeg until he has a seizure to determine if he will be a candidate for surgery. He is going to the Mayo Clinic. It is a world renowned clinic with the top doctors in the nation. I feel very confidant taking Hunter there. Here is a article about surgery at the mayo clinic. I am sure there are other places that are great but it sounds like they have new imaging devices at mayo that others don't have. Good Luck, Amy Procedure Offers New Hope for Children With Severe Epilepsy December 2, 1998 Mayo Clinic/MedscapeWire Mayo Clinic physicians have developed a new diagnostic method to accurately locate epilepsy " hotspots " in the brains of children who suffer from severe forms of epilepsy. A combination of tests, known as SISCOM (Subtraction Ictal SPECT Co-registered to MRI), maximizes the use of existing technology to pinpoint the location of seizure onset. The new imaging approach also makes surgical removal of these sites more efficient and often less radical. Previous diagnostic tools for seizure hotspots required a visual comparison of SPECT (Single-Photon Emission Computed Tomography) scans obtained immediately after a seizure and during a seizure-free interval. With the new procedure, Mayo Clinic physicians evaluate the difference between the scans in a computerized process called subtraction imaging. The resulting hotspots are then electronically superimposed over an MRI of the patient's brain for further analysis. Research results published by Mayo Clinic researchers in Neurology indicate that the imaging procedure localized the seizures in 88.2 percent of cases, compared to 39.2 percent for traditional side-by-side visual comparisons. " This procedure can be helpful to a number of people who do not have a clear [brain] abnormality on standard tests, " states Elson So, M.D., a Mayo Clinic neurologist and a member of the team that developed SISCOM. " The new imaging method can find the abnormality, which can then be the target for other tests to confirm that seizures arise from there before surgically removing the area. " Mayo Clinic pediatric neurosurgeons can use the new approach in the operating room in conjunction with other tools to further confirm the location of the seizure before removal. " We recommend the procedure for children with epilepsy whose seizures are not adequately controlled by medication and who may be candidates for epilepsy surgery, " says Buchhalter, M.D., a Mayo Clinic pediatric neurologist. " Sometimes other methods of testing don't show anything at all, and they are sometimes less exact. This method clearly has allowed some operations that may not have been possible before. " Mayo Clinic will continue to refine the new procedure for further use in epilepsy surgeries. " The next big step is to find out if we can confirm the location of the seizure using just SISCOM and cut out some extra surgical steps that are necessary now, " says Corey Raffel, M.D., a Mayo Clinic neurosurgeon. " That step would make the entire process faster, less expensive and save a lot of resources, as well as prevent the need for additional surgery. " One Patient's Story - Kay Lawler: Lawrence, Kan. Less than 24 hours after Kay was born, she began having epileptic seizures. The seizures were caused by tuberous sclerosis, a congenital condition causing tumors throughout the body including the brain. By the time she was eight months old, was suffering from more than 100 seizures a day of varying types. Not only were the seizures frequent and out of control, they also put at risk for permanent brain damage. She required several hospitalizations and started to regress to earlier stages of development. She forgot how to roll over and could no longer recognize her own parents. Doctors tried many medications - often in near-toxic or toxic doses - to no avail. Doctors recommended desperate measures in the form of a total hemispherectomy, which would have removed the entire left side of 's brain, leaving her with significant physical and mental impairments. Her pediatrician and neurologist referred her parents, Bret Kay and Lawler, to Mayo Clinic for help. Buchhalter, M.D., a Mayo Clinic pediatric neurologist, utilized SISCOM technology to identify and localize the seizure hotspots. Working with Corey Raffel, M.D., a Mayo Clinic pediatric neurosurgeon, he decided that only some portions of the left brain needed to be removed to stop the seizures. This still would leave with a vision impairment, but allow her to use the right and left sides of her body with equal ease - something that would not be possible with a total hemispherectomy. Without the new imaging procedure, 's parents may have doubted the recommendations of Dr. Raffel and Dr. Buchhalter, wondering if would be subjected to more surgery in the future to remove more brain tissue. However, with SISCOM, her parents were reassured that the doctors had enough data to perform the more limited surgery and still have significant seizure relief. " Outside of Mayo Clinic, the only option we were given was a total hemispherectomy, " Lawler relates. " To a large degree, the fact that Mayo Clinic had SISCOM testing helped us to make the decision to proceed with surgery there. But they also seemed to really understand what we were going through and they were always there when we needed them. " seems to have had the best possible outcome from her surgery at Mayo Eugenio Litta Children's Hospital. She has been seizure-free since the operation. " After she came out of the OR, she looked up and she knew who I was, " Lawler says. " It was like having my baby back again. It was unbelievable. " top Re: need help, please > If you had to look into surgery for epilepsy to remove a focal point, which > hospital would you choose? > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 US news and world report has named Mayo Clinic top. Here is the list. Mayo Clinic also retained its No. 1 rank in the neurology and neurosurgery rankings. Others in the top 10 in those categories include: 2.. Massachusetts General Hospital 3.. s Hopkins Hospital 4.. New York Presbyterian Hospital 5.. University of California, San Francisco, Medical Center 6.. Cleveland Clinic 7.. Hospital of the University of Pennsylvania in Philadelphia 8.. UCLA Medical Center 9.. -Jewish Hospital in St. Louis 10.. Brigham and Women's Hospital in Boston Re: need help, please > If you had to look into surgery for epilepsy to remove a focal point, which > hospital would you choose? > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " > > List is for parent to parent support only. > It is important to get medical advice from a professional keto team! > Subscribe: ketogenic-subscribe > Unsubscribe: ketogenic-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Tracey, Obviously no help whatsoever on this one, but I see you've got some good response. What's going on? I take it that things are not going well diet/seizure wise for you to be asking this, or is just a general question for 'maybe later' sort of thing? ----- Original Message ----- > If you had to look into surgery for epilepsy to remove a focal point, which > hospital would you choose? Quote Link to comment Share on other sites More sharing options...
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