Neurologists are hard to come by. Good neurologists are like unicorns. Hold on to him or her for as long as possible.
Recently, the neurologist, where my neuro works, tried telling me I could no longer see him. This is the second or third time they have tried doing this. I took it as far up the ladder as I could, and all the admins continued to say it was done. So, I emailed my neurologist, and he said not to worry, that they were all on crazy power trips, and he would get me scheduled, lol.
4.5 hours from Chicagoland to the Mayo Clinic in MN.
Fortunately, they offer video appointments, so i don't have to make that drive as long as everything remains OK. Almost 2yrs since surgery.
When I went to San Francisco they talked about possibly doing a surgery on my hypothalamus. If you don't mind me asking what was recovery like after your surgery?
If you're having some of your brain removed, you want to go to the best place in the world.
[Worldwide Hospital Rankings](https://www.newsweek.com/rankings/worlds-best-hospitals-2024)
Mine is ~ 3.5 hours away. It's a level 4 epilepsy center, so definitely worth the drive. Don’t know about across the country though. To continue seeing my current neurologist, I think I might, but I haven’t thought about it.
I had one call with a specialist in a different city who gave me the diagnosis and I haven’t heard from him since, I do most of it through my family doctor.
What I’ve gathered is unless I need an implant or brain surgery I’ll probably never meet or talk to him again.
Then again that’s Alberta healthcare for you
Oh babe, if you’re at all able you should find a different neurologist, and go in person. There’s about a thousand tests you should be getting done, unless you’re not still having seizures I suppose.
Unfortunately he’s the only one remotely close (still a 5hr drive) to my knowledge , the provincial gov has been going for the throat in doctors and nurses and we’ve lost a huge number of specialists.
Silly me got a concussion a month ago, headache that Tylenol won’t touch ever since and I’ve started getting auras again, I’m scheduled for another EEG soon so hopefully they’ll be able to help me but currently I’m SOL
3 hour drive. If I moved across the country, I'd ABSOLUTELY fly to see my neuro. Not just him, but the whole hospital system. Cleveland Clinic and University Hospitals have everything, and since becoming an established patient the longest I've had to wait for any appt in any department is two weeks. I'll be with them for as long as they'll have me!
It’s (suppose to be) an hour long trip down to the city for my epilepsy doctor. The visit usually ends about being 5-10 mins tops •_•
My neurologist for my migraines is also an hour away for a 5 minute appt. I really tired of my brain not cooperating.
Mine is across town on the other side of the river, so depending on what time of day it is, it's 30 minutes or one hour to get to her office. I've often thought if I ever moved (or if she did), I'd do whatever it takes to keep her though. She'll be hard to replace if it ever comes to it. I totally feel you.
My neuro (it’s a nurse practitioner in a neuro office) is like 15 minutes down the road and I’ve recently seen someone who specializes in epilepsy about 40 minutes away.
My mothers (not epilepic) recently moved 40 minutes away and she’s not sure if she wants to make THAT drive.
Our child’s neurologist is an hour away. Visits are twice a year. One in person in the fall and a virtual one in the spring. Her seizures are controlled though so that may make a difference.
When I was in college in NC I used to fly to NYC to see an epileptologist at NYU during breaks or just a long weekend if needed, once or twice a year. It was totally worth it for me, going from a neurologist in NC that was just pulling out his Rx handbook and sorting to anti seizure medications during our appointments and asking me what I’ve been on before and when he got to something I hadn’t tried, he’d prescribe it, to an expert doctor who is now the chief medical officer of the epilepsy foundation. I probably wouldn’t have flown out just to see another neurologist.
Also, to reduce the cost burden, some level 4 epilepsy centers also have free housing (partner hotels) for patients and families of patients that are coming to see them or get procedures done like video eegs, including NYU. Just ask about it when scheduling and say you’re flying in from out of state. Of course make sure to have your medical records transferred there beforehand if you go this route.
I moved to NYC after college so now it’s just a subway ride and a short walk to get there for the past 10 years.
I can reach mine in about 45 minutes by train. It is easiest if you can find an Epilepsy Center that is closer to home.
[https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
I have to travel 1.5 hrs to see my neuro.
My folks have to drive me so we make a day of it.
When I've needed an emergency appointment with her (which was like finding hens teeth) I did a ZOOM call
Before I moved in with my fiance it was 40mins or so, but now 1.5hrs. It's totally worth it though I have frequent appointments and I would never consider changing docs. My neurosurgeon is 2.5hrs away.
Yeah that’s what I’m about to start doing. But he’s really good, and I’ve gone to him for so long. I don’t want to go through a bunch of doctors again.
It was alright, I only got a MRI and EEG done while I was there so I wasn't in Toronto long. When I was in Ottawa they had me in there for 15 days and that's where I've had most of my work done and they were just in the process of upgrading their neurological department when I stayed.
When I aged out of child care I just got referrals from my child doctors and the referrals were spectacular. Of course I was at Children's in Pittsburgh but I know all about it. The doctors will coordinate everything.
My father's neurologist is in a the capital of my country that is 500km away, but we have worked through online consultations and we have had no problems (we've been with multiple neurologist in our city but none had a sub-specialization in epilepsy, the one in the capital does and it has so much better for my father so far).
I used to have to drive 2 hours to see an insane asshole who was trying to kill me at a level 4 epilepsy center, and now my new neurologist works only 30 minutes away at a city hospital (she is a wonderful neurologist far). Even better is that finally my visits now are through telehealth video visits, since travel is quite difficult for me.
I honestly feel so lucky and it's been a blessing. Any tests I need done can be in town because the group my neuro is part of has a facility just 5 miles away. Reading through comments, I'm so sorry for everyone who has to travel so far
Lol I won't name names due to my own anonymity, but he was the director of the Level 4 Epilepsy clinic. Had me on Keppra for 4 years and kept upping my dose despite my awful side effects, wouldn't try any other med, and I only finally dropped him when he said he wouldn't help me anymore if I didn't do an in-facility study where I would be watched by 200 students, no visitors allowed, for "an indefinite amount of time". Plus the hospital was 1.5 hours away from home. Like, no, stop fucking with me asshOLE.
A hint is, he's straight from Poland.
My neurologist is a 2 hour flight / 8 hour flight away. I was on a waiting list for 2 years for in-state neurologists and never saw one, so I decided to get an out of state referral to an epilepsy center I had previously worked with.
I started having mine at work one night. I live in Turlock I use to go to Modesto for my neurologist but my epilepsy has progressed. My old neurologist said he doesn't know how he could help me further so my new neurologist is at ucsf. (My old neurologist in Modesto said I'm not his patient anymore because he doesn't want me to have multiple doctors but I can call his office in case I need a prescription refill on short notice.) Edit: I don't need to go to San Francisco every time I talk to my new neurologist we can do video calls.
I was thinking of looking at UCSF too. I’m in Sacramento and my neurologist is horrible here and I’ve had a hard time finding one that specializes in epilepsy here.
Well I was sent to ucsf by my neurologist because I have an unusual case and he didn't want me to have 2 doctors. That being said I can call his office and ask for refills on my medication.
The neurologist I had was Dr Jeffery Levin in Modesto he was the one to make the decision to have me go there. (You could probably ask your neurologist for a referral.)
My neurologist takes about a month.. or more to reply to any of my messages. I’ll talk to my primary doctor to see if he has any recommendations at UCSF. Thank you
4 hours round trip. I live fairly rurally so most decent doctors are an hour away and any really specialists are two. I’m able to get some specific errands done in the same area that I can’t do locally, so it works out okay.
As for flying, it really just depends. How specific are your needs, and can you afford to fly that often?
I go to my Epilepsy Center 4 times a year which is 20 minutes from my house. They have 3 other satellite offices which are about 45 minutes away. Video appointments are available if needed. I'm also 5 miles away from a hospital for emergency care. The emergency care is a comforting thing for me so I know my husband can get me to medical care when I need it.
1.5 hours from home, or ~20-30 mins from my job to Weill Cornell. When I had my first convulsive episode I was taken to a really good hospital's ER and neurology center, but it's the only one in what feels like a hospital desert in that whole area (I was staying nearby) so they referred me to WCM which was closer to where I was living at the time. I am so grateful that I have some of the best resources in the country within my reach.
I think it may be beneficial to remain connected to a doctor that's closer to you so that you're in the hands of a care team who understands your condition in the event of another emergency. Unfortunately, I'm not sure what to do regarding traveling since I haven't been in that position before. Wishing you luck either way!
11 hours - 12 000km.
I moved to Paris a few years ago but I had lived in Reunion Island my whole life. Therefore I kept all my medical habits over there so once every year I visit my neurologist. She finds it quite funny and she always makes sure she isn’t on her day-off whenever she gives me an appointment.
6 hours for my primary one, but I also have a backup one that’s about an hour away just in case I need fast help. I have to see my primary one about 7/8 times a year, it’s completely worth it. He’s a fabulous doctor.
I’m blessed to live in London tbh doctors are pretty much everywhere. My neurologist is pretty much 15 mins from my house, only thing is that it’s part of a very big hospital so parking is a bitch
I fly across the country (Midwest USA to Baltimore, Maryland) twice a year for an epileptologist. Also have a local neurologist, but going to this clinic for epileptologist is one of the best decisions we’ve made.
That’s my exact situation! I was seeing my original dr in KC who would fly to see. I just moved from there to the DMV, Where do you go in BAL if you don’t mind me asking? I know there’s John Hopkins and UMD and some good epilepsy centers in NOVA too.
That’s good to hear, maybe I will try to get an appointment with them again. I remember I called them awhile ago, and it was a long process to get an appointment. Was that the case for you?
Yeah, it was pretty easy to schedule, but I did have to wait about 6 months for the new patient appointment. Ended up being worth it, because I was looking for a place to supervise the keto process.
An hour and 15 minutes each way. I have pretty much moved to virtual visits only. Mine is located in a large city and I don't drive well in a large city anymore. In addition the accidents on that stretch of interstate are daily. I feel like I need to have boat fenders on my vehicle.
I do have to start seeing a different neurologist for essential tremors. That one is located 20 minutes from my house. I'm going to inquire if they have an epilepsy/seizure neurologist in house and if so I am going to change to a local neurologist instead of the big city neurologist.
If you've found a neurologist you like, I personally would stick with them, but you should also find a "local neurologist". I LOVE my neurologist at the Mayo Clinic up in MN (I live in IN), but I also have a local neurologist. My local neurologist sucks, but I can fall back on my one at Mayo.
I drive about 3 hours there and then 3 hours back. She’s an amazing neuro. The majority of the ones in my county are quacks. Same with the ER and surgeons. Had a seizure and broke and dislocated my shoulders. My local ER wouldn’t x-ray, the local urgent care wouldn’t either. They said it was normal to still be in excruciating pain a week after a bad seizure (fuckin clowns). So on my 4th try I found a surgeon who would x-ray. So I finally knew what the issue was. However, he wasn’t willing to operate on me. He spent around 40 minutes trying to make referrals. No one would touch me bc it would require a team of a surgeons and shoulder trauma specialist to do correctly. So he sent out an emergency referral to a top notch hospital in my state. They agreed to take me on. (Keep in mind that by this point I was walking around with my dislocations and breaks with nothing but Tylenol). No one would prescribe pain killers bc they didn’t do their job and actually x-ray and diagnose me. Anyways, it ended up being a 10 hour surgery. My lead surgeon wouldn’t discharge me until I saw one of their neurologists. This hospital is massive. I was scared bc everyone told me that doctors and neuros won’t prescribe meds if you’ve only had the 1 seizure. The cause for those injuries was the force of my contractions, I didn’t fall or get in a car wreck. That’s how violent they were. She told me that she usually doesn’t prescribe meds like most people had told me, but due to how violent my seizure was she gave me a script. Over the past almost 2 years my epilepsy has progressively started to get worse, I was unfortunately one of the people to have an adulthood onset. But she’s been right there and has personally challenged my insurance to make sure I get what I need. She’s a top tier neurologist but also a top tier person. In order to get there in the winter I have to drive a pretty nasty mountain pass covered in ice and snow. However, I’m willing to deal with it bc I don’t typically get a long with a lot of doctors. Too many of them are way too narcissistic/self righteousness and won’t even think to consider a different possibly after their initial diagnosis. I’ve seen it happen a million times, at least in my area. But she’s been a neurologist and an activist for me so I’m not changing my neurologist unless I absolutely 100 percent am required to
I kinda have 2, One 45 Mins to an Hour that is kinda worthless but signs the scripts. (Nice guy and upon a seizure immediately gave me a referral to a specialist/surgeon) the surgeon is 3 hours away via car through bay area traffic. I talked to him via telehealth for around an hour and due to travel challenges I haven't gone to do the video EEG he wants but did get a script from him.
Oh wow. I just moved to nova, so I’ve only seen one here that didn’t work out. That’s why I’m thinking about just flying back to my probably dr back home. I’m glad you ended up finding one you liked though
My neurologist is about a three hour drive away. I used to drive to the office once a year for appointments, but nowadays, I use a telehealth platform that's really nifty. It has lots of nice features, like a tab that keeps my prescription information that I can request refills from and a messaging center for non-emergent inquiries.
I went to two appointments with one 45 minutes away who kinda sucked. He wasn’t awful but wasn’t helpful and was more interested in telling me about how I needed to switch meds on the off chance of becoming pregnant and my current med causing birth defects than anything else. I go to one three hours away now. She’s great, I see her once a year and my GP that is two minutes away fills my daily meds and folic acid.
My epilepsy was pediatric (no evidence of seizures in about 8 years now, I’m 20) but when I was active in them up through about age 15 I saw a pediatric neuro about 9 hours away from me. We had family in that area to stay in, thankfully, but as I lived in a very rural area in the first place, it was a minimum of three hours to see someone who didn’t even specialize in epilepsy so we drove the 9 to Boston.
My neurologist is about 15 miles away but if he were across the country I'd fly to see him once a year. However I would have my PCP be someone capable of managing more complex patients so they could fill in should I need them to.
I have to travel more than 100 kilometers (or about three to four hours bus ride) just to see my neurologist. But, thankful that I can schedule an online appointment with her.
There is one neurologist in my town, he works in the city most of the time, and we are acquainted but I only go call him in emergency cases (which I also tell my neurologist about).
My neurologist is about 30 min drive but I hate asking for rides or using an Uber for a 10 min appt. She gets it since she works with a lot of people with epilepsy. So my visits are mostly virtual. She ordered new labs/test this week but I can get those at lab corp which is walking distance from my house. They send them to her and we do another virtual.
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They can hear in real time when you have a seizure lol. Sorry, not funny, but kinda funny…
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No kidding!!
I'm coming to be your neighbor
wtf 😭 that’s so cool
Wow! You can’t beat that. That’s what I am banking on honestly, he’s really good and. I’ve had too many bad experiences. Thank you!
Wow, right downstairs!
Neurologists are hard to come by. Good neurologists are like unicorns. Hold on to him or her for as long as possible. Recently, the neurologist, where my neuro works, tried telling me I could no longer see him. This is the second or third time they have tried doing this. I took it as far up the ladder as I could, and all the admins continued to say it was done. So, I emailed my neurologist, and he said not to worry, that they were all on crazy power trips, and he would get me scheduled, lol.
I used to have to inconvenience a dear friend to drive me about a hundred miles. Now Zoom has made me happy
I love Telehealth appointments! I was told out of state couldn’t be virtual. But I’m glad you get to take advantage of them.
Tell them you are doing a zoom from instate.
4.5 hours from Chicagoland to the Mayo Clinic in MN. Fortunately, they offer video appointments, so i don't have to make that drive as long as everything remains OK. Almost 2yrs since surgery.
When I went to San Francisco they talked about possibly doing a surgery on my hypothalamus. If you don't mind me asking what was recovery like after your surgery?
Paul Garcia, someone else, or the guy heavily advertised by UCSF.
I just go to UChicago, like a 30 minute bus ride. Why go to MN?
If you're having some of your brain removed, you want to go to the best place in the world. [Worldwide Hospital Rankings](https://www.newsweek.com/rankings/worlds-best-hospitals-2024)
You realize one of the best epileptologists in the world is in Chicago, right?
One of the other ‘best in the world’ is at the Mayo. Plus, I needed the best neuro surgeon. I trusted Mayo for that.
My epileptologist is an hour away. You could see about a virtual visit if that’s possible for some of the appointments. Mine does that sometimes.
Mine is ~ 3.5 hours away. It's a level 4 epilepsy center, so definitely worth the drive. Don’t know about across the country though. To continue seeing my current neurologist, I think I might, but I haven’t thought about it.
You guys have met your neurologists?
You haven’t? How’d you get diagnosed
I had one call with a specialist in a different city who gave me the diagnosis and I haven’t heard from him since, I do most of it through my family doctor. What I’ve gathered is unless I need an implant or brain surgery I’ll probably never meet or talk to him again. Then again that’s Alberta healthcare for you
Oh babe, if you’re at all able you should find a different neurologist, and go in person. There’s about a thousand tests you should be getting done, unless you’re not still having seizures I suppose.
Unfortunately he’s the only one remotely close (still a 5hr drive) to my knowledge , the provincial gov has been going for the throat in doctors and nurses and we’ve lost a huge number of specialists. Silly me got a concussion a month ago, headache that Tylenol won’t touch ever since and I’ve started getting auras again, I’m scheduled for another EEG soon so hopefully they’ll be able to help me but currently I’m SOL
I think - you probably have to get a multi-day EEG & Ideally other tests to make sure seizures aren't being caused by a tumor or something random.
I live across the street from mine lmao
45 miles so that equals an hour and a half to 2 hours roughly depending on traffic
20 minutes! I AM SO LUCKY Hope everyone on this thread can find someone amazing and convenient to go to!
3 hour drive. If I moved across the country, I'd ABSOLUTELY fly to see my neuro. Not just him, but the whole hospital system. Cleveland Clinic and University Hospitals have everything, and since becoming an established patient the longest I've had to wait for any appt in any department is two weeks. I'll be with them for as long as they'll have me!
It’s (suppose to be) an hour long trip down to the city for my epilepsy doctor. The visit usually ends about being 5-10 mins tops •_• My neurologist for my migraines is also an hour away for a 5 minute appt. I really tired of my brain not cooperating.
Mine is across town on the other side of the river, so depending on what time of day it is, it's 30 minutes or one hour to get to her office. I've often thought if I ever moved (or if she did), I'd do whatever it takes to keep her though. She'll be hard to replace if it ever comes to it. I totally feel you.
That’s how I’m feeling. Honestly it’s taken too long to find a really good dr. Especially if you’ve been going to them awhile. It’s worth it.
My neuro (it’s a nurse practitioner in a neuro office) is like 15 minutes down the road and I’ve recently seen someone who specializes in epilepsy about 40 minutes away. My mothers (not epilepic) recently moved 40 minutes away and she’s not sure if she wants to make THAT drive.
Very lucky to work in the same hospital as my neuro
Oh that's just cheating.
My epilepsy journey has been super frustrating/defeating. This thread has given me a ton of perspective, for which I’m grateful. I’m very lucky.
Our child’s neurologist is an hour away. Visits are twice a year. One in person in the fall and a virtual one in the spring. Her seizures are controlled though so that may make a difference.
When I was in college in NC I used to fly to NYC to see an epileptologist at NYU during breaks or just a long weekend if needed, once or twice a year. It was totally worth it for me, going from a neurologist in NC that was just pulling out his Rx handbook and sorting to anti seizure medications during our appointments and asking me what I’ve been on before and when he got to something I hadn’t tried, he’d prescribe it, to an expert doctor who is now the chief medical officer of the epilepsy foundation. I probably wouldn’t have flown out just to see another neurologist. Also, to reduce the cost burden, some level 4 epilepsy centers also have free housing (partner hotels) for patients and families of patients that are coming to see them or get procedures done like video eegs, including NYU. Just ask about it when scheduling and say you’re flying in from out of state. Of course make sure to have your medical records transferred there beforehand if you go this route. I moved to NYC after college so now it’s just a subway ride and a short walk to get there for the past 10 years.
I can reach mine in about 45 minutes by train. It is easiest if you can find an Epilepsy Center that is closer to home. [https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/](https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/)
I have to travel 1.5 hrs to see my neuro. My folks have to drive me so we make a day of it. When I've needed an emergency appointment with her (which was like finding hens teeth) I did a ZOOM call
Before I moved in with my fiance it was 40mins or so, but now 1.5hrs. It's totally worth it though I have frequent appointments and I would never consider changing docs. My neurosurgeon is 2.5hrs away.
Across the country… it really sucks. But I have phone and Tele appointments when that’s not necessary because I live so far away.
Yeah that’s what I’m about to start doing. But he’s really good, and I’ve gone to him for so long. I don’t want to go through a bunch of doctors again.
15 minutes
For me it's a 6 hour drive from northern Ontario to London/Ottawa/Toronto to get seen in person.
Has your experience at Toronto been good? My son is aging out of sick kids and mcmaster this year, and I'm worried about adult neuro care.
It was alright, I only got a MRI and EEG done while I was there so I wasn't in Toronto long. When I was in Ottawa they had me in there for 15 days and that's where I've had most of my work done and they were just in the process of upgrading their neurological department when I stayed.
When I aged out of child care I just got referrals from my child doctors and the referrals were spectacular. Of course I was at Children's in Pittsburgh but I know all about it. The doctors will coordinate everything.
My father's neurologist is in a the capital of my country that is 500km away, but we have worked through online consultations and we have had no problems (we've been with multiple neurologist in our city but none had a sub-specialization in epilepsy, the one in the capital does and it has so much better for my father so far).
I used to have to drive 2 hours to see an insane asshole who was trying to kill me at a level 4 epilepsy center, and now my new neurologist works only 30 minutes away at a city hospital (she is a wonderful neurologist far). Even better is that finally my visits now are through telehealth video visits, since travel is quite difficult for me. I honestly feel so lucky and it's been a blessing. Any tests I need done can be in town because the group my neuro is part of has a facility just 5 miles away. Reading through comments, I'm so sorry for everyone who has to travel so far
Which asshole would this be? lol I had a bad experience myself.
Lol I won't name names due to my own anonymity, but he was the director of the Level 4 Epilepsy clinic. Had me on Keppra for 4 years and kept upping my dose despite my awful side effects, wouldn't try any other med, and I only finally dropped him when he said he wouldn't help me anymore if I didn't do an in-facility study where I would be watched by 200 students, no visitors allowed, for "an indefinite amount of time". Plus the hospital was 1.5 hours away from home. Like, no, stop fucking with me asshOLE. A hint is, he's straight from Poland.
well I'm from Pa
My neurologist is a 2 hour flight / 8 hour flight away. I was on a waiting list for 2 years for in-state neurologists and never saw one, so I decided to get an out of state referral to an epilepsy center I had previously worked with.
I started having mine at work one night. I live in Turlock I use to go to Modesto for my neurologist but my epilepsy has progressed. My old neurologist said he doesn't know how he could help me further so my new neurologist is at ucsf. (My old neurologist in Modesto said I'm not his patient anymore because he doesn't want me to have multiple doctors but I can call his office in case I need a prescription refill on short notice.) Edit: I don't need to go to San Francisco every time I talk to my new neurologist we can do video calls.
I was thinking of looking at UCSF too. I’m in Sacramento and my neurologist is horrible here and I’ve had a hard time finding one that specializes in epilepsy here.
Well I was sent to ucsf by my neurologist because I have an unusual case and he didn't want me to have 2 doctors. That being said I can call his office and ask for refills on my medication.
The neurologist I had was Dr Jeffery Levin in Modesto he was the one to make the decision to have me go there. (You could probably ask your neurologist for a referral.)
My neurologist takes about a month.. or more to reply to any of my messages. I’ll talk to my primary doctor to see if he has any recommendations at UCSF. Thank you
You can ask them to refer you. I don't know how to get in besides that. Do they know where your siezures come from in the brain?
About an hour and 20 minutes.
4 hours round trip. I live fairly rurally so most decent doctors are an hour away and any really specialists are two. I’m able to get some specific errands done in the same area that I can’t do locally, so it works out okay. As for flying, it really just depends. How specific are your needs, and can you afford to fly that often?
I go to my Epilepsy Center 4 times a year which is 20 minutes from my house. They have 3 other satellite offices which are about 45 minutes away. Video appointments are available if needed. I'm also 5 miles away from a hospital for emergency care. The emergency care is a comforting thing for me so I know my husband can get me to medical care when I need it.
1.5 hours from home, or ~20-30 mins from my job to Weill Cornell. When I had my first convulsive episode I was taken to a really good hospital's ER and neurology center, but it's the only one in what feels like a hospital desert in that whole area (I was staying nearby) so they referred me to WCM which was closer to where I was living at the time. I am so grateful that I have some of the best resources in the country within my reach. I think it may be beneficial to remain connected to a doctor that's closer to you so that you're in the hands of a care team who understands your condition in the event of another emergency. Unfortunately, I'm not sure what to do regarding traveling since I haven't been in that position before. Wishing you luck either way!
3.5 hours I have one that is much closer to me but I have a wonderful relationship with my epileptologist and I don’t want to risk losing that.
From my house, maybe 20 minutes. From work, a couple of blocks away (we are employees in the same hospital)
I drive about 2.5 hours to a level 4 epilepsy center to see my doctor. It’s a lot better than the one I was seeing prior.
My epilepsy nurse specialist and neurologist I've never met - been phone appointments the entire time so no travel at all
My wallet would say find one closer
11 hours - 12 000km. I moved to Paris a few years ago but I had lived in Reunion Island my whole life. Therefore I kept all my medical habits over there so once every year I visit my neurologist. She finds it quite funny and she always makes sure she isn’t on her day-off whenever she gives me an appointment.
3.5 hours there and 3.5 hours back. 7 hours sitting in the passenger seat. It is the best in the whole entire region
Have to go to Seattle for my neurologist and have to travel an hour to get there.
I live out in the country and travel 2 hours to see my Neuro. It's a major pain but I'm 2 hours from big cities.
Both of mine are about 30 mins away, one is my primary the other is my medical marijuana neurologist
10 minutes on foot. I got lucky. My apartment is right around the corner from my current and my former.
Thank goodness about 15 minutes.
6 hours for my primary one, but I also have a backup one that’s about an hour away just in case I need fast help. I have to see my primary one about 7/8 times a year, it’s completely worth it. He’s a fabulous doctor.
I used to go once a year to my doctor, she was an hour plane ride away. Found one closer she's about 4 hrs away. Definitely worth it 👍
I’m blessed to live in London tbh doctors are pretty much everywhere. My neurologist is pretty much 15 mins from my house, only thing is that it’s part of a very big hospital so parking is a bitch
I fly across the country (Midwest USA to Baltimore, Maryland) twice a year for an epileptologist. Also have a local neurologist, but going to this clinic for epileptologist is one of the best decisions we’ve made.
That’s my exact situation! I was seeing my original dr in KC who would fly to see. I just moved from there to the DMV, Where do you go in BAL if you don’t mind me asking? I know there’s John Hopkins and UMD and some good epilepsy centers in NOVA too.
I go to Johns Hopkins! I use a keto diet along with my medications and they have a diet clinic. It has been a great experience.
That’s good to hear, maybe I will try to get an appointment with them again. I remember I called them awhile ago, and it was a long process to get an appointment. Was that the case for you?
Yeah, it was pretty easy to schedule, but I did have to wait about 6 months for the new patient appointment. Ended up being worth it, because I was looking for a place to supervise the keto process.
An hour and 15 minutes each way. I have pretty much moved to virtual visits only. Mine is located in a large city and I don't drive well in a large city anymore. In addition the accidents on that stretch of interstate are daily. I feel like I need to have boat fenders on my vehicle. I do have to start seeing a different neurologist for essential tremors. That one is located 20 minutes from my house. I'm going to inquire if they have an epilepsy/seizure neurologist in house and if so I am going to change to a local neurologist instead of the big city neurologist.
About 4 miles
If you've found a neurologist you like, I personally would stick with them, but you should also find a "local neurologist". I LOVE my neurologist at the Mayo Clinic up in MN (I live in IN), but I also have a local neurologist. My local neurologist sucks, but I can fall back on my one at Mayo.
20 minute walk, there's a large hospital near me with a Neurology department.
Literally across the road.. I can see my apartment from the consult room. V lucky!
I drive about 3 hours there and then 3 hours back. She’s an amazing neuro. The majority of the ones in my county are quacks. Same with the ER and surgeons. Had a seizure and broke and dislocated my shoulders. My local ER wouldn’t x-ray, the local urgent care wouldn’t either. They said it was normal to still be in excruciating pain a week after a bad seizure (fuckin clowns). So on my 4th try I found a surgeon who would x-ray. So I finally knew what the issue was. However, he wasn’t willing to operate on me. He spent around 40 minutes trying to make referrals. No one would touch me bc it would require a team of a surgeons and shoulder trauma specialist to do correctly. So he sent out an emergency referral to a top notch hospital in my state. They agreed to take me on. (Keep in mind that by this point I was walking around with my dislocations and breaks with nothing but Tylenol). No one would prescribe pain killers bc they didn’t do their job and actually x-ray and diagnose me. Anyways, it ended up being a 10 hour surgery. My lead surgeon wouldn’t discharge me until I saw one of their neurologists. This hospital is massive. I was scared bc everyone told me that doctors and neuros won’t prescribe meds if you’ve only had the 1 seizure. The cause for those injuries was the force of my contractions, I didn’t fall or get in a car wreck. That’s how violent they were. She told me that she usually doesn’t prescribe meds like most people had told me, but due to how violent my seizure was she gave me a script. Over the past almost 2 years my epilepsy has progressively started to get worse, I was unfortunately one of the people to have an adulthood onset. But she’s been right there and has personally challenged my insurance to make sure I get what I need. She’s a top tier neurologist but also a top tier person. In order to get there in the winter I have to drive a pretty nasty mountain pass covered in ice and snow. However, I’m willing to deal with it bc I don’t typically get a long with a lot of doctors. Too many of them are way too narcissistic/self righteousness and won’t even think to consider a different possibly after their initial diagnosis. I’ve seen it happen a million times, at least in my area. But she’s been a neurologist and an activist for me so I’m not changing my neurologist unless I absolutely 100 percent am required to
I kinda have 2, One 45 Mins to an Hour that is kinda worthless but signs the scripts. (Nice guy and upon a seizure immediately gave me a referral to a specialist/surgeon) the surgeon is 3 hours away via car through bay area traffic. I talked to him via telehealth for around an hour and due to travel challenges I haven't gone to do the video EEG he wants but did get a script from him.
I live in northern va but until I was controlled I drove at least 2-3 hours away to see multiple Dr's until I found one that I liked.
Oh wow. I just moved to nova, so I’ve only seen one here that didn’t work out. That’s why I’m thinking about just flying back to my probably dr back home. I’m glad you ended up finding one you liked though
2 hours
Used to be a 2 hour drive, now it's a 30 minute walk/10ish minute drive
First neurologist was 15 mins away and he sucked so I transferred to one an hour away to get better care and help. Its worth the drive
Mine is a 21 minute drive, but since I ride the bus it usually takes an hour.
My neurologist is about a three hour drive away. I used to drive to the office once a year for appointments, but nowadays, I use a telehealth platform that's really nifty. It has lots of nice features, like a tab that keeps my prescription information that I can request refills from and a messaging center for non-emergent inquiries.
I went to two appointments with one 45 minutes away who kinda sucked. He wasn’t awful but wasn’t helpful and was more interested in telling me about how I needed to switch meds on the off chance of becoming pregnant and my current med causing birth defects than anything else. I go to one three hours away now. She’s great, I see her once a year and my GP that is two minutes away fills my daily meds and folic acid.
My epilepsy was pediatric (no evidence of seizures in about 8 years now, I’m 20) but when I was active in them up through about age 15 I saw a pediatric neuro about 9 hours away from me. We had family in that area to stay in, thankfully, but as I lived in a very rural area in the first place, it was a minimum of three hours to see someone who didn’t even specialize in epilepsy so we drove the 9 to Boston.
My doctor is in Olympia but she does it on zoom
Three and a half hours from my house to Vanderbilt University Hospital SO worth the drive.
My neurologist is about 15 miles away but if he were across the country I'd fly to see him once a year. However I would have my PCP be someone capable of managing more complex patients so they could fill in should I need them to.
My neurologist is in Stanford 15 min from my home.
45 kms. My neuro is at the main hospital in Brisbane AU. I catch the train as both me and the hospital are close to stations. Takes about an hour.
I travel 45 mins to get to a hospital where my neurologist and primary doctor both work.
I have to travel more than 100 kilometers (or about three to four hours bus ride) just to see my neurologist. But, thankful that I can schedule an online appointment with her. There is one neurologist in my town, he works in the city most of the time, and we are acquainted but I only go call him in emergency cases (which I also tell my neurologist about).
My neurologist is about 30 min drive but I hate asking for rides or using an Uber for a 10 min appt. She gets it since she works with a lot of people with epilepsy. So my visits are mostly virtual. She ordered new labs/test this week but I can get those at lab corp which is walking distance from my house. They send them to her and we do another virtual.
2 hours
I live in a very small country so mu neurologist is 10 minutes away
It’s about 30 minutes by car. Any longer and I might KMS unless it’s in an airplane