Should I Continue Seeking Treatment From An Epilepsy Level 4 Center? | MyEpilepsyTeam

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Should I Continue Seeking Treatment From An Epilepsy Level 4 Center?
A MyEpilepsyTeam Member asked a question 💭

Hi everyone, I wanted your thoughts about what your would do if you were in my situation. I moved about a year ago to Central California and have to find a new neurologist. My existing one from Southern California is good but he is too far away now. The dilemma I'm facing is whether or not I should bother going to an Epilepsy Level 4 Center in the Bay Area. I've already had surgery twice, and probably wouldn't go for third one even if there was an opportunity in hopes of controlling my seizures… read more

posted June 10, 2023
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A MyEpilepsyTeam Member

I agree, not every neurologist is a specialist in epilepsy. Epileptololgist is a person who specializes in different types of seizures disorders.Also, you need to get a person who actually does research on the different drugs. Some drugs will not be for the type of disorder you may have. It's like taking antibiotics,you have to have the right one. They all work but when you get the right one , you really feel better. My son has been there, and has experienced 30 years of every seizure medication, and every combination. We seen many doctors in the tristat area. Data driven, reearch based, are the new terms They go through the normal prescribing of drugs that they've been told is effective for your type of epilepsy.
Medication effectiveness is trial and error.
By the way, my son is 41, with lennaux-gestaut syndrome, which is every seizure rolled into one. He has had a seizure disorder for about 38 years. Find a doctor that will also guide you to ask the right questions. My son has 6 vns operations, in addition to medications(20 +), ketogenic diet(with the man who wrote the book on it)(probably in the late 80s), testing for a corpus callosotomy(would have been the worst thing), and was on clinical trials of felbamate back in mid eighties . Our experience has been vast. He has two main Staples, felbamate and Onfi. We use distant rectal gel for clusters and just got the new nasal spray Valium, which we have not used yet.
Good luck and hope this helps.

posted June 11, 2023
A MyEpilepsyTeam Member

Call a hospital in your and ask if there are any neurologist excepting new patients.
If you cannot locate one there call another hospital.
You usually can get the best care from a well-practiced neurologist.
Good luck
Have a blessed day

posted June 11, 2023
A MyEpilepsyTeam Member

Hello KevinLee that is a tough decision. I think that you should definitely do some research on Level 4 Epilepsy Centers in the Bay Area. A lot of hospitals in the Bay Area have amazing neurologists. I go to UCSF and they are amazing. They have some of the best neurologists and everyone is so kind there. I would definitely recommend UCSF.

posted June 10, 2023
A MyEpilepsyTeam Member

Level 4. It's worth it to have a team who specializes in epilepsy. Also, they be more likely to conduct research and have multi-faceted trials that you may want to participate in.

posted June 11, 2023
A MyEpilepsyTeam Member

Kevin I black out when I have mine and can’t talk don’t know if it’s similar but always been on meds no surgery My doc isn’t the best but life goes on. Just got my meds adjusted hope it works

posted June 14, 2023
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