The Process for Surgery

Hi there - I have been reading up on a very advanced, reverse form of MRI - called MEG MRI. It can really pinpoint where the seizures are coming from & increases accuracy by about 70%. One woman I talked to had to appeal to her insurance company 5 times before they would pay for it - it costs $20K! But the doctors, who thought the seizures were coming from one area of the brain, learned from the MEG that they were actually originating from a spot on the other side of the brain & spreading within milliseconds to the originally-believed cause/starting point of the seizures. Neurology Now is a very good magazine to get a subscription to - it is free & you can sign up on-line (www.neurologynow.com). They also post the past issues on their website, but it is better to have a hard copy. There is lots of info in there, some issues more than others. The recent May/June issue has an article about the different kinds of radiology treatments there are now. One that they mention is DTI - I havent researched that yet, but it sounds very useful. That issue also gives website services that you can track you medical history with. It is going to be very important for you to keep good records of your treatments, doctor notes, prescriptions, phone #'s, etc. I regularly get copies of my sons medical file and keep a binder at home. I have copies of his MRI & EEG's. That way, when we go to a new doctor, I dont have to count on anyone mailing the info for me. Plus I am constantly reading over the doctors notes, researching terms, looking for patterns, etc. And after years of treatment, it is hard to remember when you took which drugs & what side effects. So find a system that works for you and stick with it! Good luck to you.

Do not grow impatient with the doctors and the testing. They need to get as much information as they can in order to determine the kind of surgery you need. My 20 yr. old daughter went into the hospital twice for video monitoring, she had video eeg's done, had a regular MRI done, had a Functional MRI done, had a psychological evaluation, had a SPECT Scan done. This latest scan is one where you have to seize and they inject you with a dye to pinpoint the seizure focus or area of the brain where seizures are occurring. About 1 to 2 hours later you go down and have a brain scan that will show them this. My daughter is now getting ready to have a functional hemispherectomy. Just keep your hopes up, stay positive and motivated, and do not give up. All these tests are necessary.