Confused about epilepsy center referral

[sjconner]

My neurology records are finally at the Univ of Colorado's epilepsy center. Yea!

I called to schedule my appointment/procedure stuff. I have a referral for an appointment with one of the docs for a care optimization appointment (think that is what she said). So I would fly from Montana to Denver for my hour long appointment. It sounds like they will decide what, if anything, to do from there. It is not quite what I expected. I thought, from my what I thought the neuro's office told me, that I was going for testing. Now, I am learning that it is for an appointment. The lady at Univ of CO (I think her name is Ashley - she's a saint for putting up with my calls) told me that there is a possibility of being able to start doing some testing while I am there ...... if they determine that is what needs to be done ..... and ..... they have time, space and so on.

Is that how it normally works? I am going to go. Both my neuro and my gp want me to do this. How do I explain to the DH about the expense and travel for an appointment?

My flight and hotel will be about $600 and my appointment will be a $15 copay.:roflmao:

 

[lindsayschu2]

Yes, they review your full history in advance and then have an appointment with you and talk to you in detail and do an assessment before scheduling tests--I think that is standard. I have the same thing scheduled with Anschutz in March (they called me and set my appointment yesterday). Maybe they can do the full assessment and have some of the tests ordered to be done closer to you so you don't have to go back? I don't know . . .but maybe the value they provide is more in their ability to diagnose what is going on and come up with a treatment plan rather than the testing itself. Maybe you can explain the high cost of travel and see if they can help you optimize the expense somehow?

 

[Cint]

My neurology records are finally at the Univ of Colorado's epilepsy center. Yea!

I called to schedule my appointment/procedure stuff. I have a referral for an appointment with one of the docs for a care optimization appointment (think that is what she said). So I would fly from Montana to Denver for my hour long appointment. It sounds like they will decide what, if anything, to do from there. It is not quite what I expected. I thought, from my what I thought the neuro's office told me, that I was going for testing.

Call your neuro back to clarify if that is what he has ordered from the UCHSC. Certainly you own neurologist wouldn't send you to an Epilepsy Center that sees patients from all over the west, only to decide what treatment to pursue if that could be done where you live. If your neuro and GP both are wanting you to come to Colorado for testing, tell the neuro at Univ. of CO. Make sure you tell them about the travel expense, too. And tell your DH that is what the doctors ordered.

 

[masterjen]

Call your neuro back to clarify if that is what he has ordered from the UCHSC. Certainly you own neurologist wouldn't send you to an Epilepsy Center that sees patients from all over the west, only to decide what treatment to pursue if that could be done where you live. If your neuro and GP both are wanting you to come to Colorado for testing, tell the neuro at Univ. of CO. Make sure you tell them about the travel expense, too. And tell your DH that is what the doctors ordered.

:agree: Whenever I've had to travel a significant distance, and at significant cost, for an appointment the facility has always arranged for either testing or at least a series of appointments with various specialists, whichever is relevant. So generally it was a 4-6 hour day of appointments, tests, etc. Maybe there was a miscommunication between your neurologist and Colorado? I can't see that you would be expected to pay $600 for an hour long appointment! Definitely put the pressure on someone, to make your trip more worthwhile and cost-effective. Be aware, though, that it might mean waiting a bit longer if they agree to arrange various tests/appt. for your visit.

 

[sjconner]

Yesterday, I spent a lot of time on the phone trying to sort this out. The appointment is what he requested. I clarified that with his staff. He wants a second opinion. I am supposed to see him after I get back. I talked with the epilepsy center and I have to go down there for my new patient appointment. I am hoping that they can make a determination and let me go for good or keep me and do testing then.

For my peace of mind I need to know! Right now I have faeries dancing on my left elbow. Yesterday I could barely teach. I felt like I couldn't stay focused enough to teach anything. I kept losing my train of thought and my books and stuff. I have only felt that way a couple of times. I wonder if I am in and out.

 

[sjconner]

My appointment is March 19th.

 

[masterjen]

It is understandable to be distracted and concerned about your upcoming appointment - it's human, not necessarily epilepsy-related! Try and put it out of your mind: you've done what you can to make your concerns known about the appointment (ie. it is a lot of travel time and expense for one hour, etc.). You are also concerned about the outcome of the appointment, and I get that too. But really, the bottom line is obtaining control of seizures - whatever the cause - and feeling better. That's what we always need to focus on.

 

[sjconner]

The focus thing only happens every once in a while. Focus is not the right word. It is like I am there but somewhere else. It usually only lasts a little while - part of a class period. Yesterday was all day. It started before the phone tag. The mistakes I make during these times are ones I wouldn't make. It is frustrating for me. My students don't seem to mind ... an adult who makes mistakes. When this happens they are continually correcting me.

The DH is fine with the trip. I bought a one way ticket and will buy my return ticket when I know more. My boss is not a happy woman. She is witchy anyway :evil2: