Epileptologist Advice

[skyfire322]

I'm going to a different doctor to get a second opinion in regards to my current situation (http://www.coping-with-epilepsy.com/forums/f36/inpatient-eeg-possible-vns-24241/index2.html#post281985), specifically the latest EEG results and vulgar responses by my current neurologist. Oddly enough, he published a reference manual for EEG's. I laughed pretty hard when I found that out.

Anywho, enough bad talking.:soap:

Now I need some advice. I've nailed it down to three. On the websites I go to (vitals.com, healthgrades.com) they list the doctors as neurologists who specialize in epilepsy. However, the place I'm going to is an epilepsy center, not a general neuro office.

I'll be traveling two and a half hours to see one of these doctors, so I wasn't sure if epileptologist would be their real title or not and the websites just generalize it for the pubic.

 

[Cint]

An epileptologist is a dr. who specializes in epilepsy. They've had a bit more schooling about the specifics of seizures, whereas, a neurologist covers all sorts of nervous system disorders. But the website(s) usually say they are neurologist, even tho it is an Epilepsy Clinic. I go to an epilitologist, but when I look it up, she is listed as a neurologist.

 

[skyfire322]

I thought as much. After further research, the guy I decided to see is in fact an epileptologist. :banana:

Also, since he's out of state, and I'm not being referred by anyone, do you think it'll be difficult to get in?

 

[lindsayschu2]

Mine also says 'neurologist who specializes in epilepsy' and I know she is an epileptologist athough I'm pretty certain I go to the same place as Cint I do think a lot of them will ask for a referral--at the very least, they will probably want your medical records faxed to them. But your medical records are yours--I think if you call your current neuro and ask them to fax you or send you or your new dr. your records they can't say no. You will probably just have to wait and see how this particular office works.

 

[arnie]

I had been seeing neurologist for the first 32+ years of having epilepsy. I was referred to an epileptologist a little less than a year ago, I think. She has good credentials and came highly recommended. I ended up being disappointed in her, though. You can read the whole story here:

http://www.coping-with-epilepsy.com/forums/f23/get-thee-epileptologist-23319/

and be sure to read to the end, which shows how things ended up and why I was unhappy with my care. Things are going smoothly for me now so I will keep seeing her. Best of luck with whichever doc you end up seeing.

 

[skyfire322]

Arnie, first off, it's great to hear that things are going smoothly for you now!

The epileptologist I've decided on treated my sister for several years back in the 90's, so I know the quality of his work, and my family name is pretty well known in that medical center.

It's super frustrating, because the thing I have been telling myself over and over ever since I got discharged yesterday has been "That's not the answer I wanted to hear." That's the only thing I have been thinking about.

 

[masterjen]

Everyone's experiences are of course going to be different, but I was seeing "one of the best" neurologists in my small city for two years and getting nowhere with him in terms of seizure control, plus he was impossible to get a hold of. Another specialist I was seeing for a completely unrelated problem referred me to an epileptologist in a nearby city, and the help I have been getting in the subsequent 2 years is like night and day compared to what I was getting from the neurologist. So I am a firm believer in seeing a doctor who specializes in the area of a problem, not someone who just took a couple of courses and had a 3 month intern rotation in that area!

 

[Belinda5000]

Hello I see a neurologist and have for 25 years and he has sent me to specialist and I've always come back to him because he gives you the time and attention and knows more than the epileptologist I've been to.They didn't know my file he did and he could tell someone what I take what drugs I'm on without looking at his computer.A specialist once put me on a med I ended up being med resistant to he knew it the minute I explained to him what was happening. He use to be a professor so he's,smart.

 

[seizuregirl]

Hi there! I've seen neurologists and an epileptologist, and for sure the epileptologist knew much more than the neurologist's that I've been too.

I tried to go back to the last neurologist I saw, but realized that even though I hate the 2 and a half hr ride to get to the hospital/clinic, and that my father has to take vacation or sick time to drive me there, he's probably only 1 of maybe 5 specialists in the state that's willing to take my case since no one's been able to identify what kind of epilepsy I have.

Also, I don't think the last neurologist I saw would agree to see me, since the he practically pushed me out the door when he told me about the epileptologist and that he had already sent my medical file down to him.