Surgery?

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My doctor said that I should look into having brain surgery :brain:. I'm coming off of Phenobarbital and switching to Lamictal but even the highest dose of Lamictal isn't doing it for me.

Ever since I started getting seizures, my foot would go stiff and shake violently. My doctor believes that these are seizures. I get these before going into my seizures or without my seizures. My foot usually goes numb and shakes at night waking me from my sleep. Sometimes it happens out of no where in the day! All of the numerous medicines that I've tried do not control these, "seizures".

I have mixed feelings about the possibility of surgery. You have to stay in the hospital and have seizures and under go tests. I'm scared of SEIZURES. I hate them! They are holding me back and they are on my mind all day. That's no way to live for me.

I'm so afraid of doing another EEG! I'm scared of it. They want me to sleep and I just can't! It's the pressure of them wanting me to relax and sleep so I get anxiety. Have you ever felt the same way?

So if these are seizures, I will consider the surgery :ponder:.

If you had brain surgery, what happened with the testing and what was your result?
 

Jan4you

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First of all, I am so sorry for ALL you are going through. No wonder you are confused and scared. But..are you seeing an epileptologist? Maybe others will know this better, but I thought Phenobarbitol was an older drug not used much or any more..anyone know?

How often do you get seizures? Are your seizures Jacksonian? OR what?


In my opinion, it doesnt sound like you qualify yet for surgery..do you?
My husband had 2 surgeries AND the VNS.

So.. not sure surgery would even get approved this early in your disease.

Besided the Phenobarb..anything else you'll be taking?

Best to you.. let us know how you are doing hon.. HUGS

Jan
 

Endless

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Mrs. Walker,

I agree with Jan. It's wayyyyyyy too early in the process to be talking surgery. Just because a couple of drugs didn't work for you doesn't mean another one won't. Everybody is different, and everybody reacts differently to each different drug. Here's a link with a list of most of the available AEDs. As you can see, it's a very long list:
http://www.epilepsy.com/EPILEPSY/seizure_medicines

I also agree about seeing a seizure specialist (an epi). That's a doc that will have much more savvy around the best drugs for you. About being scared of tests....
* The epi will have you check into the hospital for an even better EEG - an in-patient video EEG. That's a normal step for a seizure disorder. It's not bad really, just very boring. You sit around in a hospital bed reading, eating, and twiddling your thumbs for a few days. There's no way you could stay awake for 2-5 days, right?
* The epi will also make sure you've had all the right brain imaging done, including possibly a PET and a SPECT, Functional MRI, etc. None of these is painful. Just boring like the rest. You get to lay there and have a nice nap. Except the functional MRI, where you get to play games and answer questions. :)

Did your current neuro say where in your brain your seizures are coming from, as shown by your EEG? (Not by what is moving in your body) Your EEG should have given him that info. I assume the temporal lobe. Did he say which side (again, just based on the eeg and not symptoms)?

Don't worry about surgery right now. Concentrate on finding a doctor who knows a little bit more about seizure medications and seizure treatment - like an epi.

Addendum: I read in another post that you are on 400mg of Lamictal - that isn't the very highest dose. The mono-therapy maintenance dose is considered to be between 300-500 mg., the Max being 25% higher than you are on now. So there's a little more room for your doc to up your dose. Don't do it on your own, though. Sometimes they have their reasons for what they do. Call him.
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=15349#nlm34068-7
 
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