Hi, I am scheduled for a video EEG at the end of March. I wish it wasn't so far out because it's causing me some anxiety. What could the results be, and what will they do after that? Adjust meds, recommended surgical procedure or surgery? For those that had it, what did they determine and what happened next? Thank you.
@A MyEpilepsyTeam Member is right. i have been through every meds on earth. about a dozen med later and the drs thought about surgery. mom and i refused and went on other alternative meds dr. they got treatments and then diets. i was on keto and the rest is history. i am on keto ever since with amazing results.
the only things you wanna know is... a) trust your gut feeling. b) research everything (or at least what you have). and c) trust your drs. if your have a bad gut feeling about a dr, get another dr.
Remember, they can SUGGEST SURGERY, but you have the final say on any treatment (as long as you are conscious -- otherwise I am hoping that your spouse or someone close is officially your health proxy). Though, they will not perform surgery for seizures without a signature of approval by you or your health proxy, it is good to have it official just in case.
Unless it is determined that the low grade (non lethal tumor) is the source for all of my epileptic seizures, then I have no intentions of having brain surgery. It is located close to the scull on the brain and thus as safe a brain surgery as a brain surgery can possibly be. However, since the frequency of auras and simple partial seizures is very low and complex partial seizures and full seizures is rare, I will stick with medications.
@A MyEpilepsyTeam Member Actually, she put the leg compressor on for the first 2 days, but no one remembered later on. My only allowed walking was back and forth to the bathroom.
The neurological committee (at Brigham and Women's Hospital my neurologist presented my results of the testing and the EEG LTM, and when I saw him at the beginning of December he was telling me about the suggested treatments (all of the testing and scans are/will be schedule to prepare if brain surgery happens, but the fact that I had partial seizures recorded by the EEG in both temporal lobes that type of surgery will not happen. Of course, I had a second MRI of my brain (first was in August) to start the day (MRI, appointment with my neurologist and PET Scan) showed a low grade tumor in an upper level of my brain and the PET Scan showed that it is at the very least the source of some of my seizures and that it has been there a long time. The result of the presence of the low grade tumor means that my neurologist will present these results to the neurological committee -- along with the results from my MEG, which I will have on January 6th--to determine whether the recommendations will change.
There were many answers found during these last 5 months, as well as the first hope that I have ever had of achieving a long term complete seizure free state) with more to come in 2022 with the scans and testing to come, starting with the MEG.
(continued for some background on why I had no HOPE before now and why I will not agree to brain surgery--except possibly the low risk one to remove the low grade tumor)
@A MyEpilepsyTeam Member 1st timers eeg. netflixs and chill and light reading is gonna be 1 day. what are you gonna do for the rest of the time? you need a little bit more than that. maybe card games like solitaire or spider solitaire or something... or a dice games. if you have a tablet or a laptop, that is gonna be the best. you will be board for hours to days. you need to get your brain distracted from the eeg test.
@A MyEpilepsyTeam Member my shampoo of choice is suave with essentials. but i have thick shiny hair so i have to get the oils to brake the gunk off. i tried other shampoos but it didn't work but the suave thing.
question... is your 5 day eeg at home or in a hospital? sometimes at home is more relaxing then the hospital. i don't feel the difference but i lived in the hospital for a long time. if it is at home, it is probably a lesser thing (like meds changes). but like i said, at home or the hospital, is it is your 1st time (or a couple of times) it is usually a easy thing. all you have to do is sit there and be board. the hole test. my advice is to get a lot of sit down hobbies (like doodling/painting or crafting/easy building). the other thing is when the test is over, you will have glue gunk. my advice is massage, rinse, repeat. get a soft comb or a hair brush... get into a shower/bath... massage your brain with a comb/brush (to find the glue spots)... lather with a shampoo (i like the one with essential oils), and rinse, and repeat.
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