Is it time to go to the Mayo Clinic?

[forward2007]

I have had epilepsy since I was 5 years old but it was under control from age 19 to 38. I think I have had 5 seizures now since October 2nd of 2007. I used to have at most 4 seizures a year and they would happen in my sleep. Maybe once every three years between '88 and '06 I would actually have a seizure during the day. 4 of the 5 seizures I have had since October 2nd have happened during the day. And this was after increasing my Tegretol does and beginning to take Keppra also. I have been accepted at the Mayo Clinic in Phoenix but there is a two month wait to go there. More importantly, I have HMO insurance and they only take PPO insurance. I could pay the cash to see the Dr's there but I would not be able to change my insurance to PPO insurance until this coming June to pay for any tests or surgery.

My main question is does my situation sound like one in which the "regular Neurologist" is no longer good enough to get my seizures back under control?

 

[Bernard]

The choice of doctor is a real personal one. If you aren't happy with your doc (or don't have confidence in min/her), then search out a new one IMO.

 

[Meetz1064]

I have to agree with Mr. B on this one. It's really a personal choice. And not an easy one at that......... onder:onder::rock::rock:

 

[malamuteme]

Hello Meetz, THis is 1st time here. We are considering surgery for my 18 yr. old son. Saw that u r from Indiana. We went to Mayo- Jax in November to meet with Dr. and be evaluated. He told us that IU Med Ctr is a level iv epilepsy center. I want to go where we will find the best and most experienced care. Do you have any insights?

 

[stilldancing_98]

Welcome Mal! My name is Teresa. I live in WA state. I have had surgery at UW harborview medical center. How are you and your son?Oh my son has epilepsy to. Generalized. He can't have surgery.

 

[Meetz1064]

Hi there

malumuteme! Welcome to CWE! And yes, I am from Indiana.

I LOVE IU Med Center.......although I have yet to use it for any ep related concerns myself, my neurologist is a professor there. And I may be headed there soon myself anyway after the discussion he and I had the other day. op: We'll see.

I've used the IU Med Center a lot for my youngest son...he has multiple medical issues, and he has been well taken care of over the years by them.

EVERY doctor that I have EVER met there in ANY department, and I have met quite a number of them in the neurological department over the years (I don't remember the names though) have all known their stuff.........very very well. Each of them have been very honest, and to the point, but not rude. They actually CARE about the PATIENT.

At least that's been my experience......

Another CWE member, Kate, has also been there, I believe.......

 

[malamuteme]

IU Med Center

Thank you so so so much for your reply. It sounds as though you know the stresses of being a Mom wanting to do the best for their kid. I made an appointment for pre surg evaluation with a Dr Dragu Sabau. He has many published articles relating to TLE surgery. We are going Feb 10. Thank you for your support. This is really an amazing site.
Cindy

 

[malamuteme]

Hello Stilldancing. We aren't certain yet but appears my son has focus in frontal or anterior temporal with secondary generalization. I am concerned about taking this step because he has so few seizures, 2-3/year. He does well in school. When he does have a seizure though, it is a full blown tonic clonic. He has been pretty banged up. he is leaving for IU this fall and I would love to have a "cure" I have read about the surgery causing memory problems. He had troubles with memory when on trileptal but since his switch to Lamictal the cognitive probs went away(though still has seizures). Any advice is extremely welcomed and appreciated.
Also I have read many say their E went into remission during their 20's. Is this common? My son is almost 19.

 

[stilldancing_98]

This is just my opinion. But he is so young. If I had the chance before surgery I would of done the alternative. Neurofeedback. That is what I am aiming more for my son. I believe it gives them a sense of control to.Look in to it and talk to some of the moms who have done it.My 11 year old loves the idea. My seizures need more control.And now the docs want to do another surgery.