University Clinic Neurology

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Music36

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As most of you know, it’s best for us to see an epileptologist as opposed to a general neurologist if we can and they are usually found at university clinics. I’m fortunate to live near a top university hospital and clinic, but it can be challenging dealing with a large university clinic. I’ve reached the final straw and am fed up. I can’t even schedule an appointment. I’ve been trying for a couple of months. When you call you are talking to a large call center. You can’t contact the actual clinic by phone. The people in the call center schedule appointments and send messages to the department. I know doctors schedules can change each semester because they are professors. It got to the point where I know they know next Spring’s schedule but the people in call center are still telling me my epileptologist is not scheduling appointments. I asked is he still on staff and they say yes. The university changed their portal system October 1 and it said it will take time to transfer everything from the old portal. It didn’t even have my epileptologist listed as one of my doctors and so I wasn’t able to message his team which is ridiculous. Finally, he was listed as one of my doctors and I messaged the team two days ago. I went back on and could see my message was read by staff a couple of hours after I sent it , but they have not responded. This is absolutely absurd and ridiculous and I’m fed up. Screw them. I’m going to go to a general neurologist in private practice. If I could drive, I’d go storm into their office and tell them how screwed up their system is. I know I really should continue to see an epileptologist because my seizures were never controlled by meds and I went through epilepsy surgery seven years ago, but I feel I have no choice.
 
I should add I’ve been a patient there for twenty years and had my epilepsy surgery at their hospital. During this time, I’ve had four different epileptologists because three of them have left. Many people travel from far away to come to this hospital/clinic. I only live about 15 miles away.
 
Hi Music36,

Take my word I know how you feel. I'm on my 3rd Epileptologist the best one retired and the other 2 that I've seen are always
to busy to see me and finally they told me there was nothing more they could do for me since I had the surgery and I'm drug resistant.
One thing you can do is go one google and type in fast people search and then type in the name of the Dr. and the location and
hopefully you can get an updated phone number all of this is free. If they keep pushing you away tell them it's going on report to
the medical conduct board in your area and take my word they will get moving.
I wish you the best of luck and May God Bless You,

Sue
 
The neurologist I've been seeing referred me to another one who works with Northwestern Medical Center/Hospital. He's the one who added Xcopri. After I had a breakthrough complex partial & emailed their office, he's had me raise the dose by 50MG/night for 2 weeks. H has also ordered an ambulatory EEG, which will be start 11/7.
 
Actually, all I need is a neurologist to write me a prescription. My surgery seven years ago was successful. I just have occasional auras nowadays and I’m down to one seizure med these days. I just feel like it’s not worth all the aggravation and stress which can end up causing me to have seizures. I’ve had to call patient advocacy a couple of times years ago regarding this department. I don’t remember the reason though because it’s so long ago. All this aggravation just to talk to the doctor for about 15 minutes once a year is ridiculous. I live in Atlanta and I’m referring to Emory University. I’m thinking I should just pick a general neurologist in private practice. What do you think?
 
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Porkette,

The epileptologist still is at Emory. He’s just not scheduling appointments at this time the call center at Emory neurology tells me and has been telling me for the past two months. I saw him last January and have been trying to schedule an appointment for this coming January. Normally, appointments would be scheduled in August because they would know the doctors’ spring schedule by then. You see when you call Emory Neurology you’re talking to a call center that’s not even in the same location as the epilepsy department. You’re dealing with this massive institution. It’s not like this with all departments though. I see other specialists at Emory and do not have these issues with them.
 
The problem is if you have epilepsy and live in Atlanta or anywhere in GA for that matter, Emory is the place to go. Emory has a level 4 epilepsy center.
 
Actually, all I need is a neurologist to write me a prescription. My surgery seven years ago was successful. I just have occasional auras nowadays and I’m down to one seizure med these days. I just feel like it’s not worth all the aggravation and stress which can end up causing me to have seizures. I’ve had to call patient advocacy a couple of times years ago regarding this department. I don’t remember the reason though because it’s so long ago. All this aggravation just to talk to the doctor for about 15 minutes once a year is ridiculous. I live in Atlanta and I’m referring to Emory University. I’m thinking I should just pick a general neurologist in private practice. What do you think?
I'm in the same situation. It costs me $60 bucks to sit in the neuro's office so he’ll renew my rx. My old neuro retired and the new one they assigned me is an epileptologist, but his specialty is pediatric surgery, not exactly relevant to me...

Can you give a general neurologist a try (if they will have you) and then switch back to an epileptologist if it seems like it's not working out?
 
Nakamova,
That’s what I’m thinking is to go to a general neurologist. It’s been 20 years since I’ve gone to a general neurologist. My seizures were so bad back in the day that the general neurologist sent me to an epileptologist and the experience was eye opening in the difference between the two. But, now I don’t feel I need to see an epileptologist; especially, when it’s such a hassle. Some people think I should continue to see an epileptologist because I went through epilepsy surgery and live with side effects from the surgery, but there’s nothing the Dr. can do about those issues. The thing is it seems like some of the general neurologists in private practice specialize in pediatrics or other neurological conditions (e.g., Parkinsons, migraines, etc.).
 
Now, I called and tried to make an appointment with a different epileptologist at Emory and was told the same thing. Schedule is not available. They’re saying because of the big change over of the patient portal for the entire university clinic. This is crazy because I’ve been trying to make an appointment for two months. The change over started October 1 and says it can take a month for all information (e.g., meds, lab tests, etc.) to be transferred. But, I don’t understand why they can’t schedule appointments. The person said call back in December to schedule an appointment. Usually, you have to schedule appointments at least six months in advance. I’m supposed to see my epileptologist in January.
 
How frustrating! I think lots of places (not just hospitals) are understaffed and overscheduled right now, adding to the pain of getting a prompt appointment.
 
How frustrating! I think lots of places (not just hospitals) are understaffed and overscheduled right now, adding to the pain of getting a prompt appointment.
That’s not even the issue there. They’re saying they can’t schedule appointments with my doctor right now because they don’t know his schedule yet for Spring semester (which begins in January), which is absurd considering it’s November. At university hospitals/clinics they have many obligations. They are professors. They do research, teach classes, and have other responsibilities at the hospital. Normally, I’m able to schedule well in advance and have to because they are booked up. What makes this situation even crazier is I finally said okay to scheduling with a nurse practitioner and that became very complicated. The call center said they have to message the appointment coordinators for the epilepsy department and that they’ll contact me which they have not yet. This whole thing of simply trying to schedule a damn appointment has become extremely difficult and aggravating. I’ve been trying to schedule an appointment for the past few months and they keep telling me call back in a few weeks. The whole thing is absolutely absurd. I’m back to thinking I should just go to a general neurologist in private practice instead of an epileptologist at a world class hospital. I’ve been under the care of an epileptologist at Emory University for 20 years now and had my epilepsy surgery there. It’s not like I’m some new patient trying to get in.
 
I was worried for nothing. My epileptologist’s office (Emory Clinic) just called and said they now know my doctor’s schedule for January and gave me an appointment in January. It’s just in the twenty years I’ve been going to Emory my epileptologist was always booked up way in advance. Things were different this time. I was told he had many commitments and they didn’t know what his availability was going to be for January until now.
 
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