One Month Visit with Neurologist - What to expect?

[xenablue]

I have a follow-up appointment with the neurologist later this week. I asked if she needed the SD card or any information from the machine, but apparently not.

What should I expect to happen at this appointment??? How will she know I'm doing ok or not? Should I go along with print outs of every day since last month on CPAP?? LOL

I know I'm a little over the top when it comes to dealing with my health issues - as in, I like to know exactly what's going on and to take a fully active roll in my treatment. I feel completely at a loss with this as I still know so little, and have the distinct feeling the neuro's not going to be particularly forthcoming with the kind of information that will be useful.

I want to make this appointment useful for me - would appreciate any words of wisdom.

Thanks,
xena

[Julie]

She will talk to you, examine you at least superficially, and probably make some suggestions after, hopefully, coming to some conclusions. Beyond that, not knowing her, it's hard to predict what she personally is like and/or what she sees the appt. as being about... whether a serious search for ultimate answers, with in depth testing, etc., or just another appt. to reassure you about things. I'd be very interested to hear how it goes though!

[GumbyCT]

I asked if she needed the SD card or any information from the machine, but apparently not.

What should I expect to happen at this appointment??? How will she know I'm doing ok or not?

Apparently she intends to ask you how you are doing. Unless she has a crystal ball.

I want to make this appointment useful for me - would appreciate any words of wisdom.

Find a real sleep doctor.

Should I go along with print outs of every day since last month on CPAP?? LOL

Sure, Bring em. Watch her face & eyes. Let us know how it went.

Good Luck

[Janknitz]

I think the fact that she doesn't want to download your card herself or have the DME do it and report to her is very predictive of how this visit will go.

A. Doctor: "So how are you feeling"
You: "Pretty good, CPAP is really helping"
Doctor: "Great, keep using the machine. I'll see you in a year" OR "Great, call me if you have problems.

OR

B. Doctor: "So how are you feeling"
You: "Not very good. I can't get used to this mask, my nose hurts, and I still don't feel very good"
Doctor: "Well, the important thing is to keep using the machine. I'll see you in a year" OR "Call me if you have a problem."

Bottom line is, there is NO money in follow-up care. This visit is probably scheduled because your insurance requires a follow-up visit. If the doctor was truly interested in how things were going, she would ask for data.

She will tell you the most important thing is how you feel, not the numbers. OK. What if you aren't feeling better? Without data, how can she determine why not and what to do about it???

If I'm wrong about this, I owe you a doughnut.

[Julie]

I'm not sure discouraging people before they even see a doctor is such a great idea. It may well be that things go as you say, but why assume it (even if it's happened to you)? Just because the doctor may not want the print-outs doesn't mean she is otherwise incompetent to look at a patient and inquire about them, very possibly from a whole new perspective than has been done previously. Neurologists see apnea differently than pulmonary doctors, and from RT's or ENT's, and I think you owe it to yourself to give her a chance.

[trytryagain]

I told my DME when my first followup was with my Neurologist. They had me send in my SD card in plenty of time to forward to Dr. He definitely went over all reports because he was well informed before I even spoke to him. I think I got a good one. He wants a return visit in 2 months rather than a year.

[freshair]

Something is not right if your Dr doesn't want to download your sd card info ????--it has your sleep and useage information, How can the dr make an evaluation ? when I went in for my 30 day checkup they took my sd card downloaded to their system and made copies for me and the dr--The dr told me not to come back for a year if I don't have any issues--tks--FA

[xenablue]

Thanks so much for your input everyone!

Julie, I get where you're coming from, but I got the same 'blase' attitude in a couple of follow-ups after my diabetes Dx from the PCP and endo. The neuro kinda mumbled a few words, patted me on the head and said 'run along - see you in a month'. I've learned to go to a new doctor with the attitude that this is the treatment I'll receive and I want to be prepared and armed with as much info as I can. I hope to be shocked, and if not, then she's in for a surprise - I'm showing up tomorrow with print-outs of everything since Day-1 - October 14 - and I have lots of questions for her.

I think the others who responded are probably very close to the mark, but I'll take that donut (and ignore my glucose numbers for a couple of hours after) and enjoy reporting that you were all wrong, if that's the case.

I tend to think you are correct though. I saw neuro after the sleep study/OSA Dx and spent 10 minutes with her, of what was supposed to be a 45 minute appt. I walked out of there absolutely NO WISER than when I went in. Mind you, I had no idea what questions to ask at that time, but I did expect some instructions from her.

I have appts with my cardio and endo right after the neuro, and now they both EXPECT me to show up with my list of questions, spreadsheets, graphs etc. and ready to discuss the extensive labs done last week. My entire medical team is now this way with me - they KNOW I'm coming prepared, so they come with their brains sharpened LOL.

One thing I'm not sure about - I do have a transponder dooverlacky on my CPAP machine, which the DME respiratory specialist checks remotely and calls me every couple of weeks - maybe they send the neurologist results from that??? Let's hope, anyway. LOL

I'll keep watching this thread for more wise words from you all.

Thanks and cheers,
xenablue

[Tired Linda]

First of all, when my DME downloads my card for compliance, they automatically send a copy of the reports to my sleep doc. I was asked to bring my SD card to the appointment but, even if I forgot, there was still 60 days of data in my file. (My appt. was just over 2 months after I began therapy)

My sleep doc is also a neurologist, and apparently I hit the jackpot when I was referred to him. I went to the appt. with a pile of printouts and a list of questions I wanted answers to. It's what I do with any doctor, and I usually throw in a few questions I already know the answers to just to see how they are addressed. If I'm not comfortable, I'm done, time to find a new one. Trust your instincts.

Sure, Bring em. Watch her face & eyes. Let us know how it went.

The doc walked into the room all business, sat down, saw my data, and his eyes just started twinkling. He asked a few questions, checked my nose and throat, and let me ask the rest. We had an interesting conversation about pressure changes, central apneas, snoring, and he was obviously happy to have a patient concerned about her therapy. He laughed as he asked me how I knew how to make adjustments to my machine, how did I find out I could get software and agreed that cpaptalkdotcom was a place where one could get help in adapting to day to day life with an xPAP!!

I know my experience is probably far from the norm, but there are knowledgeable, caring doctors out there. (Now the DME is another story, but I know how to bypass that one!)

Linda

[xenablue]

Well!!! I went in with a very bad attitude to my follow-up visit with the neurologist and have to say I got completely turned around. Our first meeting must have been under adverse conditions for one or both of us, because she was AMAZING!!

She was furious the DME hadn't sent her a print-out of my progress from the transponder or SD card and was THRILLED that I had a copy for her. She chuckled when she said I wasn't supposed to know about the software and how to use it, but was excited that I want to be pro-active in my health and explained a few things on the graphs.
She said what she saw from how I was doing, is that she needs to have the titration upped from 7 to 9, and that they gave me too small a mask, as my teeth hurt a little in the mornings. She was also FURIOUS with the DME for not immediately changing out my 2-day old split hose and wrote a script.
Then she decided to send me with a letter to our referral office where they changed my DME to another, much better one.
I set up another appointment for 6-months, but she said if I was having any problems and the DME couldn't solve it, then let her know right away.

Saw my cardio right after the neuro and all my labs are fantastic, including my cholesterol, kidney function and A1C! Now it's off to the endo! Luckily all my medical team is in the same clinic so my file just goes from one to the other, so they can all see everything to do with my health.

Thank you all so much for your input - it helped immensely!

Now I just have to go train a new DME LOL.

Cheers,
Xenablue

[Tired Linda]

Good news, xenablue, sounds like you got a winner, too!

Keep up the good work,
Linda

[Janknitz]

YAY!

And I owe you a doughnut!

I'm glad it turned out that you have a "good one" there. Sadly, my cynnical post was based on way too many experiences with the not so good ones.

[Julie]

Ooh, I feel so vindicated! (you have to realize I worked for neurologists half of my life, and know there are fantastic ones out there).

[xenablue]

YAY!
And I owe you a doughnut!
I'm glad it turned out that you have a "good one" there. Sadly, my cynnical post was based on way too many experiences with the not so good ones.

I'll take a maple Krispy Kreme and throw my meter out the window LOL, thanks Janknitz - yes, me too and hence my cynicism specially after the first visit and she seemed so vague and rushed - oh well, I'm OK with changing my opinion - it's to my benefit anyway LOL.

Cheers,
xena

[xenablue]

Ooh, I feel so vindicated! (you have to realize I worked for neurologists half of my life, and know there are fantastic ones out there).

And I'm glad, Julie....... I'm so relieved actually, because I love that all my medical team is in one place, so it would have been horrible to have to find someone else. All my doctors confer with each other over my treatment so it's very much to my benefit that the neuro turned out to be wonderful.

Janknitz is correct though - it's hard to have faith when you've had to deal with less-than-wonderful doctors and, in my case anyway, almost had me in a couple of wrong surgeries for incorrect diagnoses. Hence my apprehension with any doctor who doesn't appear to be giving me their full attention.

All's well that ends well!

Hugs,
Xena