My question refers to the actual tangible benefit of going to Mayo Clinic or Johns Hopkins type places. Like many of you, I've seen seen mulitple neurologists and had second opinions.
I obviously understand and believe in finding the best medical care possible (especially if you are having trouble with a diagnosis or controlling seizures); however, after a med change several years ago and having side effects that my neuro couldnt explain, I began to get other opinions. I went to a research hospital locally and saw a few other neuros as well.
I found that these other neuros mostly did the same thing and that it was very difficult to find a new doctor or treatment facility that really looked at my unique situation up front. When I went to a new place they basically went through the obvious questions and basic tests up front (which I understand, but found a waste of time).
At the end of the day, I stayed with my neuro because he at least knows me and knows my entire history and I didnt feel like i needed to re-educate someone and go over the same basic info again and again without them listening to why I was there in the first place or trusting me enough to believe me when what i told them didnt jive with a typical patient.
I already know and admit I have seizures, I just wanted someone to help with me with side effects that didnt adhere to what docs said should normally happen.
Having said all that, friends suggested places like Mayo or Johns Hopkins to get a work up and i looked into it, and even emailed and spoke to some people there on the phone, but my experiences led me to wonder if all the money and time and aggravation was really worth it or if it would be more of the same.
Would I just end up with, yes you have epiliepsy, yes it is controlled with medication, yes those side effects aren't typical and we're sorry you experience them (or doubt that they are caused by your meds), and there is really nothing else to do but switch to another med and see how you do with that one, or perhaps surgical route (which we dont recommend because you are controlled with meds).
Anyway, I just wanted to know if any of you feel travelling to one of these so called high end facilities really is worth it if your seizures are controlled but you are looking to just feel better in daily life due to years of taking meds.
I obviously understand and believe in finding the best medical care possible (especially if you are having trouble with a diagnosis or controlling seizures); however, after a med change several years ago and having side effects that my neuro couldnt explain, I began to get other opinions. I went to a research hospital locally and saw a few other neuros as well.
I found that these other neuros mostly did the same thing and that it was very difficult to find a new doctor or treatment facility that really looked at my unique situation up front. When I went to a new place they basically went through the obvious questions and basic tests up front (which I understand, but found a waste of time).
At the end of the day, I stayed with my neuro because he at least knows me and knows my entire history and I didnt feel like i needed to re-educate someone and go over the same basic info again and again without them listening to why I was there in the first place or trusting me enough to believe me when what i told them didnt jive with a typical patient.
I already know and admit I have seizures, I just wanted someone to help with me with side effects that didnt adhere to what docs said should normally happen.
Having said all that, friends suggested places like Mayo or Johns Hopkins to get a work up and i looked into it, and even emailed and spoke to some people there on the phone, but my experiences led me to wonder if all the money and time and aggravation was really worth it or if it would be more of the same.
Would I just end up with, yes you have epiliepsy, yes it is controlled with medication, yes those side effects aren't typical and we're sorry you experience them (or doubt that they are caused by your meds), and there is really nothing else to do but switch to another med and see how you do with that one, or perhaps surgical route (which we dont recommend because you are controlled with meds).
Anyway, I just wanted to know if any of you feel travelling to one of these so called high end facilities really is worth it if your seizures are controlled but you are looking to just feel better in daily life due to years of taking meds.