After Visit Notes

[valeriedl]

My last visit was a few days ago and it was with my neuro's physician assistant. I keep a list of all the meds I'm on, surgeries and other medical things that need to be known that I type out. I keep a very detailed seizure diary and type it out to give it to my neuro at visits. When I gave it to her she couldn't believe it and was so happy. When she saw what had been going on with me - seizures, when they happened, what I do during them, other medical problems that might have been going on and if I'd been taking any other type of med - and we talked about it.

I can read my after visit dr notes on the hospital's web site. Her's were very close to what I had typed. At least she wrote down at the top of the page that I do this. I sort of got a kick out of it, felt pretty good about it too.

 

[Nakamova]

I know a lot of doctors don't have time to actually enter information into the record, or they don't do it properly, so it’s great that the PA does that for your neuro.

 

[valeriedl]

I know a lot of doctors don't have time to actually enter information into the record, or they don't do it properly, so it’s great that the PA does that for your neuro.

I've done a list for many years. My neuro would go over the things on it with me then have it as he put it "Scanned into the computer." Over the last few years he's just set the list aside, talk about general things, check my VNS then tell them to "Scan the list into the computer."

The PA did say she was going to have it scanned into the computer but she did read it and go over the things on it.

When he started ignoring my list, I started to not like him, and it got worse and worse. The only reason I've stayed with him was because he was the only neuro who dealt with VNS in the area. We knew he was going to retire soon and wasn't sure was going to happen VNS/neuro wise and we asked the PA about it. Turns out there's at least 5 neuros in the office who work with VNS now and they've been there for a few years! I got pretty ticked off when I heard about that.

I've got a visit with my neuro in January and I think it's the last one before he's gone. I'll just have to figure out who's the best neuro to go to after that.

 

[Nakamova]

Maybe you can discreetly ask the PA which neuro is the best -- PAs often have the inside scoop.

 

[valeriedl]

I'll see if I can do this, it's a great idea. My neuro's office is in a large hospital and other being there and looking around for her I don't have anyway to talk to her. The hospital website does have a link you can send things to for the neuro department, questions, medicine and things like that. Who the message is sent to isn't necessarily the one who reads it or replies though. I've sent messages to my neuro and might get a reply from him or from someone else in the office.

On the website she has 5 stars next to her name and she was great. I just wish she was a dr and dealt with the VNS. She doesn't have a direct way to contact her - email, phone number or any thing else.

 

[Nakamova]

Can you ask her when you see her in January, or would that be too late?

 

[Army Vet]

My first neurologist I went to was a solid 30 minutes away (no way you're getting there any sooner) and the parking wasn't fun either. He seemed to be good at first, but then he just didn't care. Take two aspirin and see you in 6 months. NEXT. Well hell, I could've done that. I wasted time and money (gas) for this?!?! BYE! Found someone more local and suggested my VNS which only took 2+ years to get through the VA and that included me making a call every weekday after having breakfast. It was my full time job since I couldn't drive/work. I'd be on there for hours each day. Got used to ignoring their elevator music. Kept a list of who I had already talked to (nope, not going to keep talking to the same person on the merry-go-round only to start all over). Nope, I already talked to Mr. Smith, he transferred me to you. Oh, hold on... 30 minutes later, I get a new person. Sometimes I would get dropped and call right back. Oh it was fun lol.

I even sent an email. I still have it. I was so disgusted I added this to the bottom of my email.

"PS - If you really (truly) wonder why 20+ veterans kill themselves a day it’s because of this crap. We ask ourselves, 'Why bother asking if they’re just going to keep giving us the run-around?!?'"

In less than 36 hours I got a response

After this I got ANOTHER neurologist, but this one was through the VA. He seemed a little creepy, but was at least trying some different stuff. Now I have another one because I have recently moved. He's turning my VNS up because it was so low. Every time they tried to bump it up to "the next level" it would gag me like I was choking on something! The doctor here seemed to be doing it slower or something because it is much more tolerable.

Sorry for the book I just wrote

 

[valeriedl]

Thanks Army Vet, don't worry about books, I like to read them

The only neuro's here who deal with the VNS are ones who work in major hospitals that are half an hour away. None of the local ones do.

After this I got ANOTHER neurologist, but this one was through the VA. He seemed a little creepy, but was at least trying some different stuff. Now I have another one because I have recently moved. He's turning my VNS up because it was so low. Every time they tried to bump it up to "the next level" it would gag me like I was choking on something! The doctor here seemed to be doing it slower or something because it is much more tolerable.

The VNS should be moved up slowly. When I'd gotten my VNS and my neuro would change the settings I'd wait in the office for a while to make sure I felt ok to leave. If I didn't he'd make some changes to the VNS, and I'd wait again. If I felt ok to leave then I did. I'd usually always feel ok after the original changes were made and he didn't have to make any other changes.

 

[CQ:)]

Found someone more local and suggested my VNS which only took 2+ years to get through the VA and that included me making a call every weekday after having breakfast. It was my full time job since I couldn't drive/work. I'd be on there for hours each day. Got used to ignoring their elevator music. Kept a list of who I had already talked to (nope, not going to keep talking to the same person on the merry-go-round only to start all over). Nope, I already talked to Mr. Smith, he transferred me to you. Oh, hold on... 30 minutes later, I get a new person. Sometimes I would get dropped and call right back. Oh it was fun lol.

I even sent an email. I still have it. I was so disgusted I added this to the bottom of my email.

I go through the hospital where I had my brain surgery so only speak to my neuro when we have our follow ups. I have a epilepsy nurse and neuropsych who work with my neuro are awesome so if anything is urgent I’ll email them.

Our appts depend on how I’m going, the neuro will usually tell me at the end of the appt when he’ll see me. Mostly it’s every 4 - 6 months. The clinic usually make the appt, send out letters about a month before the due date but they stuff around and half the time it’s close to my appt date and I don’t have an appt.
I usually bipass the clinic and go straight to my neuropsych to find out if she knows when I’m due for an appt. she knows I’m an overthinker and have anxiety so will organise things her end to get an appt for me.

There has been the odd time I’ve had to contact epilepsy clinic direct about my
and the phone lines have been crazy, even real early in the morning. I’ve been on hold for over 1/2 hour with their crappy music. It’s worse now with covid.
In the end I give up and give my epilepsy nurse or neuropsych a quick call and ask them the question I have. A quick hi, ask them the question thankyou very much then that’s it. No stuffing around, they’re busy and I’m usually at work lol.

 

[Plasticmask]

Mine is a small team of four; the youngest one can Sign a bit which is nice, even though I don't Sign very well (can't remember how, even though I took the classes) and they just throw pills at me and send me for scans every few months to see how the holes in my brain are progressing.
I'm personally grateful for this, as I don't want to spend the money on all of the testing and besides, I don't want to be tortured.
We all KNOW why I'm seizing, and I don't CARE what the different names are for each kind of seizure that I have.
Sometimes I just fall, sometimes I have Gran Mals, I blank out daily, on and on and on. I wouldn't remember them anyway for longer than a few days, other than Gran Mal and Atonic.
So they leave me alone for the most part, and as I said, just give me pills to try and make things more comfortable and less of a nightmare for the Wife and me until I'm chained to a bed in a couple of years for the last of it.
Were it not for that team, I'd like as not *already* be dead so I try to remember to praise them highly every time we visit.
I keep a log as well, and just fax it in whenever I fill a page so that they can keep track and try to "tweak" or change my meds accordingly. It's really all that they can do, but I really wish that they'd give me some REAL goshdarned pain relief... but they won't do it so there it is, what do you do, right? It's not like I can go downtown and find a pusher or whatever they're called nowadays to get something illegal.
So I gripe and gripe to them about it. For what good THAT does.
At least I can sleep nights. That's something for which to be grateful.
The bedtime meds knock me right straight out. I take them, and I've got ten minutes at the most if I fight it, but I'll lose and I WILL sleep.
And I don't hurt when I sleep.

 

[cadsgj]

Keeping details of our seizures, that which we do remember or others are present to see, is a great Thing to do. It truly helps out. For me it is a type of memory I normally lose, or what I never in reality had. Been doing it since Sept. of 2019 every seizure and details. I must say though, I do not share the info with my neurologist like others do; my neurologist tells me he is too busy I sure wish I had others with my neurologist that I could connect with.

 

[Plasticmask]

Yeah, regarding remembering the actual event, it's definitely a mercy that we usually don't.
My logs usually begin with the date and approximate time, and "Came to on floor in (wherever), bleeding from (wherever), dizzy and angry, head pounding, also found bruising (wherever)", like that.
ONCE in a while, and it's always the atonic ones, I'm fully aware of the complete helplessness as I just fall and cannot move no matter where and how I land, no matter how badly it hurts, but those only last a few seconds (and no matter how many times it's going to happen, no matter how short-lived the episode, it's a TERRIFYING experience.) Then I lay there, experimentally wiggling fingers and toes until I'm confident enough to reach up to lean on Marlowe, stand and make my way to a chair for the rest of it. THEN I log it, and if the page is filled, fax it in. The only thing that irritates my neuro is if I don't wait to fill the page before faxing because my file is "getting too fat and heavy" or somesuch.
Interesting that your neuro is 'too busy' to want to know about your seizure activity. Do you have a lot of seizures, or is that too personal? I've had (checking) 14 episodes of varying kinds since June began, alone. Maybe if yours are under reasonable control, that might be a factor? Not like I would know anything about ANY of this. Obviously. I'm just another patient like yourself.