why does it take neuros so damn long to get back to their patients?

[momof3boys]

Ok, so I found out that thursday night of last week, after increasing my topamax from 25mgs to 50mgs, that it wasnt going to work. Cloudy Vision, Fast heart rate, I wasnt able to concentrate, headache, etc. So, the last I heard back from the nurse at the neuro's office was Friday at 1pm. She said she would have to run this by the dr to see what other medication there was that he wanted to try me on. During our first visit, on the 7th, he listed a few medication names, and all of which I havnt tried. You would think that by going over the weekend, and now leaving a message this morning for the nurse, and still no message is returned today, they would at least get back to you? NOPE.

My husband had a drs appointment out of town, and I didnt want to miss her call, so I left her a message saying she could reach me at my cell phone number. But I got no call from the office again today. When I did call after 4:30, it was their on call service. They switched their phones over to the on call services as of 4:30pm and I called at 4:36pm. I missed them by 6 minutes.

Here i am having this slow motion feeling again... and the feeling of deja vu, all through out the weekend and into today. I just dont get neuro's these days. Whats more important than getting back with their patients about getting them put on a anti seizure medication that is going to control their seizures, rather than let them go, and continue to have seizures?

We get home, and of course there was no message left on the home phone answering machine. I freaking want to give up. Im calling first thing tomorrow morning. Im getting tired of feeling like doctors just dont care about the lives of people with epilepsy these days.

 

[Autumn Breeze]

So frustrating :/ It took me almost TEN days to get a hold of my doctor after my last cluster. It's incredibly frustrating.

 

[KarenB]

Well, actually, it's the nurse who's at fault, not the doctor. I would suggest that at your next appointment you bring this problem up -- tell your doctor what day and what time you called, how many messages you left, and how long it took to get an answer. If he's worth his salt, he'll address this problem at the next staffing meeting.

You might also want to ask your doctor if he would be willing to give you his email for situations like this. We use this system with Jon's epileptologist (in the States) and his neurologist here in Bangkok. We have found that the doctor will usually get back with us by the end of the day, with a direct answer (rather than playing go-between with the nurse). Our epileptologist even welcomes us to email him from Bangkok and will consult with our neurologist. Our epileptologist makes us promise not to email him outside of office hours, as all emails set off his beeper.

Both our epileptologist and neurologist are on the faculty at medical universities, and of course they also have busy practices, so if we happen to contact them when they are teaching a class or seeing patients, it's understandable that we might have to wait a little while for them to get back. (Our epileptologist tells us that if possible, contact him on Tuesdays or Thursdays as these are his "thinking" days)

 

[momof3boys]

I'll be for sure calling tomorrow about this. I dont blame the dr, Im mostly upset with the nurse. I guess I should have titled this post as "Why does it take Nurses So Damn Long to get back to you!" lol.

With how their office works, they have an automated phone system, where it gives you options on what to select... for appointments, test results, asking questions to a nurse, etc. I did once call the front desk, and was then directed to the nurses line. so, tomorrow if I get the nurses voicemail again, I will call the front desk and ask them there what can be done to get an answer. I wish the drs were like there here and give out their email addresses. that would be nice!

 

[KarenB]

Yes, we had to go through that system with office automated system with Jon's Neurologist in the States (before she referred him to the Epileptologist). Every time we'd call the nurse, it would go to her voice mail, and she would wait until 4:30 to return all her calls (and of course by that time, the regular office phones had gone over to answer service, so if I happened to miss her call -- like was in the bathroom or something -- and called her right back, couldn't get through, so then would have to wait til the next day). That was SUCH a pain in the butt. We did discover, like you, that calling the receptionist and having her put us through directly worked in the case of urgent situations where waiting 24 to 48 hours was not an option.

 

[C0urt]

i like debbie in scheduling, that is all she does all day.

 

[AngelwithDentedHalo]

With my Neurologists office, I have to go through their reception staff in order to get to talk to the nurse and I go to them saying I need the nurse to call me or I need results of a test and half the time the nurse doesn't get the message. He's a great doctor and the nurse is great but reception staff sucks.

My guess is, the reception staff is who you get to talk to and they don't relay the message. Whenever I do get to talk to the nurse, she's usually really good about getting back to me. I haven't had any emergencies so that I need to see the Neurologist so far but if I do have one, he's the kind of doctor that will make himself available to see me asap.

 

[CQ:)]

Kristin,
I hope the nurse gets back to you Tomorrow with some answers.

I know I'm lucky because I have never had any problems with any of staff from my local neurologists clinic or the specialists at the epilepsy clinic. When I used to just see my local neurologist if I had to ring his clinic (eg any issues or questions) I would speak to his receptionist & pass on a message for him to ring me back. He would usually ring me back that day or the next day.

At the epilepsy clinic any questions or issues I have I email to my epilepsy nurse or neuropsych & they will usually email back within a day or 2 with a response. If they could answer my question themselves they will, other wise they will ask my neurologist at the clinic then get back to me as soon as they can.
There has only been 2 times where I had to wait a while for a response from them.
The 1st time was last December when I emailed my epilepsy nurse to ask her a question about generic Keppra. After not hearing from her for almost a week I emailed my neuropsych because I thought the epilepsy nurse was away. My neuropsych emailed me back explaining they had been really busy at the clinic & she was sure the epilepsy nurse would get back to me as soon as she could & she sent a copy of the email to the epilepsy nurse. The epilepsy nurse did get back to me the day after & was very apologetic for taking so long to reply, she told me she spoke to their pharmacist about the generic keppra & gave me an answer to my question.

The other time was the beginning last month when I sent an email to my neuropsych having a moan about something that was stressing me out & asking her advice on if I was handling the situation OK. It took her 2 weeks to get back to me & when she did get back to me she explained she had been on extended leave & had only gotten back to work that day which is why it took her so long to reply.

 

[momof3boys]

Finally got ahold of them... GET THIS!!!!


After leaving two messages yesterday with NO phone calls back... I got up this morning to call. I finally reached the nurse. Told her who I was, that Ive left numberous messages, and had no phone call returned. This was her response..."Kristin, the dr is out of the office, and he travels from our office, to the three major hospitals, and the heart institute around town, so he can be gone for up to 2 weeks".

OK. SO you mean to tell me you are going to let your patients sit back and have break through seizures, til this dr returns to the office, which she has NO CLUE when he will return. She's just giving me an estimated time frame!

I told her IVe been sitting here since friday being told to discontinue the Topamax by the on call neuro immediately, and to call the office first thing friday morning. Now the last time I heard from this nurse was friday at 1pm. She had me go over the weekend, and on monday with no response back. Not even going to call to let me know about this dr not being in the office at all. I had to do all the work.

Then, after she tells me this, I tell her what does she expect me to do? I have a life. Im not going to sit back and have seizures and wait for this dr to come into their office and put my life on hold. She said to go to the ER. What the hell are they going to do? I said how can i contact this neuro? Her response, "There is no way to contact him". Well then why are you telling me to go to the ER? Is he at the ER? No, he may not be at that ER. Then why the hell would you tell me to go?

OMG. I seriously was furious!

Then, she asks If I want to speak to the office manager? I said sure, yes I do!

I am on hold, and the next person who replies is the receptionist. She tells me that she is not the office manager, and that she will transfer me to her. Again, on hold... instead of getting the office manager, the nurse again comes back online, and tells me the manager is on another line, BUT she did get in touch with the dr!

Oh Really? THought you cant get ahold of the dr if he's not in your office?

She said this.... "He said to discontinue taking the Topamax and he will prescribe you another anti seizure medication that will be sent to your pharmacy".

OK, first off I havnt taken the Topamax since Thursday night of last week when I had the reaction to the 50mgs, and was told by their on call neuro to stop it immediately.

THe nurse knew this on friday of last week when I spoke with her. So why she would think I would continue to use this medication since then I have no clue.

I call the pharmacy, only to find out the medication she ordered, was VIMPAT! I tried Vimpat in April 2011, and had terriable depression, crying spells, wanted to stay in bed 24/7 and never be around people! I worked my way up to 100mgs and the neuro then tried to cut my dose in half, to 50mgs, but no change came, so I was taken off. THis was told in my visit to this neuro on 2/7! Why the hell would they prescribe me a medication Ive already tried and didnt work? So, I told the pharmacy I couldnt take it, and I called back to leave another damn message for the nurse.

I was suppose to be seeing a different neuro that is at the office, and not the one they put me with. So I called up my primary care drs office, the one who sent the referral over, to see if they can resend a referral to the neuro office again, only this time put on there the drs name that my primary care dr recommended I see.

Not the dr who they put me with! The dr who they put me with, I was seeing years back... and I didnt care for him.. the reason why I left there! I didnt know it was going to be this old neuro til he walked in the damn door at my appointment that day! But instead of fighting it, I wanted the seizures to stop so bad, I just went with the flow.

Now I wish I would have just put my foot down and said why are you here? It was a different dr who I am suppose to be seeing!

Im waiting on a call back from my primary care drs office about getting in with the other dr who they recommended and not this neuro they put me with.

Gosh what a ride this has been... I tell ya, they need more proffesional updated neuros out there!

 

[CQ:)]

Kristin,
You sure are being stuffed around by the neurologists & the nurses.

Surely the nurse would always have a way of contacting the neurologist even if he is out of the office, especially in cases of emergency. In the circumstances like yours where the medication wasn't helping so you are pretty much back to square 1 I would've thought the nurse would've contacted the neurologist ASAP to find out what he wanted you to do then ring you straight back.

I don't know if your neurologist works in a clinic with other neurologists or if he works on his own. But if there are other neurologists in the clinic & your neurologists was unavailable at the time why couldn't the nurse ask one of the other neurologists?

 

[momof3boys]

I asked the same question to the nurse today.. well if you cant reach my neurologist, cant you ask one of the other neurologists? Her response, No, I cant Kristin, Becuase they are not your neurologist, its our policy that we must contact your neurologist.

ROLLING MY EYES HERE...

 

[momof3boys]

I did hear back from the nurse, and she said she contacted the neuro, who wants to try me on Trileptal I think thats how you spell it... its probably wrong spelling though! lol

But when I looked it up, the side effects were so scary! Alot of them sounded like what Lamictal has.. and I had a very severe reaction to that medication. The sores around my chin and mouth area got so bad, bleeding out, very swollen huge neck glands! Wasnt good at all! I feel like they are just throwing medications at me and not considering what would work best for me.

Plus I had to be put on another stronger antibiotic for my damn ear infection. I found out about that last monday and have been on Amoxicillion for that. But then I thought I had a dental problem, so yesterday I went to my dentist because I was having tooth pain. He checked me out, and said my sinus's were infected and I would probably need additional medications to clear that up. The primary care drs office put me on a stronger antibiotic and I will be picking that up later today to start that.

I just dont want to start this new anti seizure medication with the side effects being swollen glands, when Im already having a sinus and ear infection. Double wammy there!

 

[momof3boys]

If I do try it, I would try the generic version first, due to the price difference... $40 for brand name, vs $10 for generic. I spent $40 on the brand name Topamax and got one week out of it. I dont want the same thing to happen here.. to me its like a huge waste of money. So, if it comes down to it, and the seizures to get worse, I will try the generic version of it. But I would like to run it by the new dr at this neuro office, who I was meant to see in the first place. I found out today, that the referral that was sent over on Feb 4th was suppose to be for the new dr, but I was put with the old dr I saw there years ago. But their office never told me If I wanted to be with the new dr, they had to get the old drs approval, and then get the new drs approval too. If they would ahve told me that, I woudl have waited to get the approval of the new dr just to save me a $20 copay with that old neuro I had!

The way this old dr operates, is he's telling me he wants me on a medication Ive always told him I tried two years ago... VImpat! It didnt work for me. Made me feel very depressed, crying, not wanting to be around anyone at all. Im sure he didnt look at my chart today when he had his nurse call that in. I had to call their office back to let them know that I cant take it... like I told him before! I just want a dr who is going to take me seriously and listen.

 

[Nakamova]

If you do try the Trileptal, ask to start at the tiniest dose possible, and to go up very, very slowly -- waiting a few weeks at each dose before going up the next tiny increment. That can help minimize the risk of an allergic reaction like the one you got on Lamictal. In fact that should be the ramp-up protocol for any seizure med you try, since you're fairly sensitive to them. Low and slow.

 

[momof3boys]

Thanks Nakamova! I will for sure bring this up if I need to get on this medication!

 

[KarenB]

Oh Kristen, I am so sorry you are having such a rough time with your doctor's office.

Our Jonathan also had an allergic reaction to Lamictal, but he was on Trileptal for 3 months prior to Lamictal. He did NOT have an allergic reaction to Trileptal. In his case, it did not help his seizures, but his seizures are extremely difficult to control with just about any med. The side effects that he had were hyperactivity and aggression, but these are unusual side effects for Trileptal, and usually only happen in children.

I would suggest giving the Trileptal a try -- as Nakamova said, just start at a tiny dose and work your way up. If you start out with the generic brand, then it's important that you stick with the SAME generic brand the whole time you're on the med (ask your pharmacist if they always stay with the same supplier, because some pharmacies switch around all the time to get the best prices).

Hope you have a blessed and peaceful day -- am praying for you!

 

[valeriedl]

I hate it when drs take so long to get back to you!!!!!

Sometimes I might get a reply from someone in my neuro's office (or even my neuro himself believe it or not) the day after the phone call. Sometimes it might take 2 weeks.

I'll give them a day or two to get back to me then I start nagging them. I'll call once a day for two days. Then twice a day for two days. Then three times a day for two days. And so on and so on till I get an answer from them. I think they get so sick of talking to me or hearing the messages on their phone that they get me an answer so I'll stop calling.

 

[KarenB]

That doesn't sound unreasonable at all. It is really appalling that some offices take more than 48 hours to get back to their epilepsy patients.