Finding a new neuro?

[valeriedl]

Over the last year I've gotten pretty upset with my neuro who I've had for over 10 years.

I always type out a list of my seizures and details of them from my seizure diary. I keep one list for myself and I give one to my neuro to keep. He used to go over them with me and talk about them. Now he just briefly looks at them and sees how many seizures I've had, doesn't discuss them anymore. He has them scanned into my file now so I'm almost positive he's using them as his office visit notes.

If I'm having a problem with something he might tell me what could be causing it, and it usually isn't med or epilepsy related, or he says he doesn't know. He usually doesn't try to make any changes to things to fix it. He might tell me to see a dr who deals with the part of my body that the problem is - like seeing an optometrist when I started seeing double vision, which I still am. The optometrist I saw even told me that it was probably a problem with my epilepsy meds, not my eyes, and there was nothing he could do about it because of that.

What really set me off is when I found out I had cancer at the beginning of Feb I sent my neuro a message about it asking if there was anything that the drs I was going to see or I should know. He replied a few days later telling me there was nothing and the message was signed by him. At my last visit, at the beginning of this month, I mentioned about the cancer and it was all new news to him!!!!

All he seems to want to do during our visits is check my VNS then I'm done.

My only problem with finding a new neuro is my VNS. It's not like I can just look up a neuro in the phone book and make an appt with him because the VNS isn't something that they all deal with and I know none of the local ones do. My neuro works in a hospital, not a private practice, which is about 45 min away and I really don't want to start seeing someone much further away than that. I don't know how many neuros in that hospital deal with the VNS, if any, because there aren't that many there.

 

[resaebiunne]

You just gotta do your homework and go the extra mile if you need the care, and you mentioned cancer so I would take that extremely seriously. Maybe there is someone at the hospital you could call to discuss your situation and see if they know about the doctors there. It would be better than calling each doctor individually for sure. Your insurance may be able to help find providers too. Fact is though, if you limit yourself in some way, you get stuck.

 

[CQ:)]

Are there any other neurologists who work at the hospital your neurologist works at who you could change to?

I go to an epilepsy clinic which is at the hospital where I had my brain surgery so there are a number of neurologists and a couple of epiologists available to see. I had been seeing the same neurologist at the clinic since my surgery in 2011 but he left the clinic in 2016 to further his career in private practice so now I see one of the other neurologists there.

 

[txtiger]

To piggyback on CQ's post, is your current doctor an epileptologist/associated with a Level 4 Epilepsy Center? I believe most major cities and/or cities that house medical schools have one. I would imagine they would be familiar with the VNS and the unique needs those patients have. If your current doctorr isn't affiliated with an epilepsy center, you can find the closest one to you here:

https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/

 

[valeriedl]

Thanks a lot txtiger! There were a good bit of drs on there most were about as far away as the one I'm seeing now. I'll have to take some time looking them over, they all have a list of things they work with, including the VNS, and see which one I think would work best for me.

Hopefully they will be accepting new patients.

 

[Fedup]

I think resaebiunne is right you have to go that extra mile.

 

[valeriedl]

I talked with my husband about finding a new neuro and we decided that we'd wait until everything cancer related is over which should be in about 4 months. Trying to find something that would work better for me when my body probably won't be working right in the first place, because of the radiation and hopefully not chemo, probably won't make much sense. But if I start having any problems with my current neuro during that time then I will go see another one. We even shook on it.

I'm going to start looking into new ones and asking my PCP if there are any that he might recommend. The PCP I was seeing retired and the one I'm seeing now is a younger dr and usually the younger ones seem to know more about what's going on with other, even better, drs out there than the older ones do.

 

[knothing]

During the 4 months take the time to research neurologists and start setting up appointments. I know with my Neuro you can't get in for at least 4 months, it felt like for ever to get that first appointment.
Not that this is always possible but if you can get it to 2 top picks and have an appointment with both to see who is the best fit for you. You are looking for someone to work with you not write prescriptions and copy paperwork. I lucked into my neurologist but would drive 100 miles to see him so that I could work with someone.
Good luck with all of it.

 

[resaebiunne]

Good point about the waiting time. A busy doctor can take months to establish that first appointment with. Worth it to at least call and check how long it will take to get in.