Nervous about 1st Neurologist Visit

[CJR]

My daughter's first neurology visit is Wed. afternoon. It's got me so nervous. We've been waiting for so long to get in to see a Neurologist that I feel like I've got everything riding on the line here.

The "What if's" are controlling me. For instance: What if the neurologist doesn't want to change her meds. What if the neurologist thinks that she's doing well on the Phenobarbital (which she's not!). What if she (the neurologist) doesn't want to take the time to really answer my questions. What if my 3 page bulleted list of questions seems ridiculous to her. What if she thinks I'm overreacting. What if she doesn't believe that the increase in seizures are hormone related. What if I go CRAZY with all these What ifs....

Too late...I've already gone crazy. I feel like I'm well prepared (after all I've had 6 weeks of time to hang out here and really learn more about E.) but I'm still so nervous that I can hardly sleep (when I do I dream of the neurologist being a real nightmare). My concentration is so off that my husband is starting to suspect that I am having Absence seizures. I told him that he is NOT funny!

I feel like I'm gearing up for a prize fight

Am I being ridiculous? Am I making a mountain out of a molehill? Does the initial visit really determine the rest of our relationship with this doctor? Appreciate all first time neurologist stories/advice anyone has to share.

[RobinN]

I would say.... sit back, take ten slow deep breaths.

All of the above will happen at one time or another. You may be the lucky few that "click" with your first neurologist. Just know that there are others, and you can get second and third opinions. Which in the long run is a good thing to do.

Some say really insightful things, while others are sitting with a warm prescription pad.
I would say go in without any preconceived ideas. Ask questions, but know that they are done listening to you, at about the 12 min. mark (there was a study done on this).
Your three pages might intimidate them, so if you can make the type smaller and only go in with 2 pages you might win a friend.

Good luck. I would say this does not determine the rest of your relationship. If it is built on respect and a give and take of ideas, openness on the part of the doctor, you have a winner. Our first neurologist was not a good match, but what did I know. We got in within one week, were handed a prescription. We were told that hormones do not have any connection, nor does diet ... huh? I trusted. Then on to neurologist #2 and that one made quick decisions within 20 min. It was like a factory, but then again it is a teaching facility, so who would think differently. So back to neurologist #1 and more of the same. Then I met Bernard, and started my investigating, and found neurologist #3 that at least understood what catamenial seizures are. She appreciates my notes, works with me to reduce Rebecca's seizure frequency. That is our goal together. She has pushed at times for the pharmaceutical approach, and perhaps that is good for me. But she also is open to alternatives.

Bottom line is you need someone that you can talk to. If you don't feel it within the first 10 min, you will know. If you feel comfortable, let it grow over time.

[LynnW]

Am I being ridiculous? Am I making a mountain out of a molehill? Does the initial visit really determine the rest of our relationship with this doctor? Appreciate all first time Neuro stories/advice anyone has to share.

Short answer, no, the first visit doesn't necessarily determine your relationship with your doctor.

First, a little about the backround surrounding my diagnosis: I had been having what I now know were simple partial seizures for about the last 5 years. Never saw a doctor about them until, in Dec, I had an episode (still wasn't sure it was a seizure yet) in which I lost consciousness. Went to my family doctor, had a CT scan an EEG done at our local hospital, results all normal. I was referred to a cardiologist to see if it was heart related. Has stress test, echocardiogram, and tilt table test, all normal. Finally referred to a neourologist, had to wait 6 weeks for the appointment.

OK, now fast forward to my first neurologist appointment. I live in a small town with no neurologists, so the guy was an hour's drive away. I got to the appointment a little early to fill out the inevitable paperwork, the lady behind the window was very nice...ok so far. Wait.........wait.........An hour and a half later, my name was finally called. Strike one.

I'm in the examining room explaining my symtoms, and he didn't hesitate to label my episodes as simple and complex partial seizures, probably originating from the temporal lobe. He examined the CT scan pictures of my brain that I had brought with me, declared them "unremarkable" (wait a minute, I think my brain is pretty special!) and did a standard neurological evaluation (tested reflexes, watched me walk in a straight line, etc). We talked a long time( about 45 minutes altogether). He explained a lot about seizures, epilepsy, and even some other things on my list of questions that weren't related to my seizures. He wanted me to get an MRI (more detailed than a CT), and another EEG, this time sleep deprived, but thought there was enough evidence to prescribe an anti-epilepsy drug (Trileptal in my case). When I expressed concern over side effects, he got defensive and said I'd grow a third eye and my skin would turn purple and fall off. Strike two.

We talked a little more, then he ANSWERED A PERSONAL CALL ON HIS CELLPHONE!!!!! Strikes three, four, five, ..... to infinity!

OK, so I hated this doctor.

I had the tests, started the drugs, made the followup appointment, sulked, and thought about things for a while. The Trileptal was really hard on me at first. It made me really stupid and forgetful, and not myself at all.

I realized that, besides the doctor being a jerk, what I was really mad about was the diagnosis itself. I really didn't want to have epilepsy. Especially since nobody could tell me Why. And I was mad about having to take these stupid drugs that made me feel so bad.

Anyway, the neurologist had been recommended by a couple of people I trusted, and I feel like everyone deserves another chance. And, after all, he never acted really arrogant like some specialists can. Maybe he was having a bad day. I was also adjusting to the Trileptal pretty well, and I hadn't had any more seizure activity. So six weeks later, I went to my follow up appointment with an open mind. And it was MUCH better.

I realize now that he is just kinda scatterbrained. He does things as they occur to him. My EEG results weren't in my file, so he immediately called the hospital where I had it done from the phone in the examining room to find out where they were. At one point, he left briefly to confer with his partner about my case. He once went to his office to bring back his brain model to illustrate something we were talking about. After he took it apart he couldn't get it back together. But in the end, he seems caring, knowledgeable, and he never tried to hurry me along. He was willing to answer ALL my questions, even though I might not like all the answers. Again, he spent about 45 minutes with me. I'm glad I gave him a second chance. I can accept his quirkiness. I guess I will keep him for a while.

Sorry this is so long, just wanted to give you a picture of my experiences. I guess my advice would be to listen to what the neurologist says, ask your questions, and maybe give it time.

Good luck. I wish you and your daughter the best.

[CJR]

I have a long history of meeting medical professionals due to being a primary caregiver for my in-laws (cancer patients until they passed). I have found that I can have a good "relationship" with doctors if they have some sense of humor and they are generous with their time. I hate feeling rushed. I had a few specialists for my father-in-law who did that and I often found that I had to call them repeatedly after an appointment just to clarify one thing or another.

Robin,
12 minutes, huh? I'll have to time how long it takes me to get through the "question packet" I've prepared. LOL.

Lynn,
We also live in a very rural area (hence the 6 week wait time to even get an appointment). I think that is what is adding to my nerves. It's not like I have a huge variety of choices should this one turn out to be a Dud. But I am trying to keep an open mind.

I've researched the Dr. as best I can online and am impressed by her Education and Training. I've also read some of her articles and publications. She seems to have a real interest in Brain mapping with EEG/ERP; computer-assisted EEG analysis, intractable epilepsy and surgical treatment of seizure disorders. So, I guess I should stop worrying, Right?

I would but...No one from the local Epilepsy Foundation has ever heard of her. No one seems to have any knowledge of her "bedside manner". And that worries me...

It's a never ending cycle.

[RobinN]

Ah.... you didn't say it was a woman. Everything will be just fine.

For the 12 min rule, stop the stop-watch during the doctors answers.

[Bernard]

In with the good air, out with the bad air... Your visit will go fine and you will soon know if the doc is right for you and your daughter or not.

[stilldancing_98]

Its a relationship. Yep thats what it is alright. As they ask questions, you ask questions. What is there belief system. Why did they become a neurologist. Communication is the key. You want somebody who will listen to you. Things will work out the way they are suppose to. And don't forget to smile after you let out some bad air. It will let everyone feel a bit better. Teresa

[CJR]

Breathe, you say?

Why that's so crazy it just might work!

[BuckeyeFan]

Its a relationship. Yep thats what it is alright. As they ask questions, you ask questions. What is there belief system. Why did they become a neurologist. Communication is the key. You want somebody who will listen to you. Things will work out the way they are suppose to. And don't forget to smile after you let out some bad air. It will let everyone feel a bit better. Teresa

Some great advice in here. Basic relationship/communication skills sure can help with a doctor.

We all understand your worry - try to remember one more thing. We will be thinking of you Wednesday and will be with you in spirit. You won't be alone.

[hawke86]

Good Luck with the first appointment.

[CJR]

Thanks for all the support everyone! I really appreciate it. I also want to thank everyone for sharing your stories here at CWE. It's hard to imagine but just 3 months ago I didn't know anyone with Epilepsy. I didn't know much more than basic First Aid. I didn't realize that there wasn't a one-size-fits all medicine. I had no clue that medicine side effects can be so bad.

Basically, because you all share your stories here I feel like I am going in to the first neurologist appointment with a lot more knowledge than most. Thanks for making me brainier.

[stilldancing_98]

And tonight I am saying a prayer. Can't hurt!

[CJR]

UPDATE: We have survived our first neurologist appointment. ~Sigh~ What a relief!

I feel very comfortable now in saying that Dr. Helen Barkin of SUNY Upstate in Syracuse, NY is a wonderful neurologist.

Matter of fact, I was so impressed that I have already reffered a friend. She spent almost 2 hours with us. (Way more than 12 minutes Robin! Isn't that awesome!?!)

I had a three page list of points I needed to cover to answer my questions. But she was so thorough that I only had to ask about 4 or 5 things. It was amazing!!!! We all felt very comfortable speaking freely including my daughter who impressed the doctor with her knowledge of seizure types, and Ketogenic diets.

Prior to the appointment I told my Mom that I believed that my daughter would be diagnosed as having J.M.E. I also predicted that her seizure types would include: absence, myoclonic, atonic, Tonic Clonic, and Cluster Seizures, not to mention the photosensitivity. (All of which I learned through CWE and Epilepsy Foundation websites~Thank You ALL!) The good news: I'M PHYSIC!!!

Dr. Barkan diagnosed her with all of the above. We are weaning from Phenobarbital and beginning Depakote ER with a bonus of Diastat. We are scheduled for an Ambulatory EEG for Memorial Day Weekend. Bloodwork to check levels every two weeks until our six week. At the six week appointment we are also scheduled for a sleep deprived EEG and bloodwork and another visit with Dr. Barkan.

The Dr. is also looking into getting some special lensed glasses (blue in color I think) to help with the Photosensitivy. Has anyone ever had these types of glasses?

It was a fantastic appointment and I am so excited that we finally have a plan that I feel like throwing a PARTY. Anyone care to dance?

[BuckeyeFan]

Dance all night long - you deserve a little break. Glad to hear things went so well. You have taken a big step.

[RobinN]

What a relief. I guess the breathing helped.

It would be great to have a list of doctors that come highly recommended. I know though that what works for one, doesn't always work for another.

It does feel good to have a plan. I know I have always felt more relaxed when there was a path to take.

[CJR]

I am excited that the Dr. seems so easy to talk with. (Absolutely no self importance attitude) I have reservations about the Depakote but she talked through them with me. She is open to "naturalized treatments" as well but wants to try traditional methods first. She is recommending a B vitamin combo. Not sure on those details yet but... Every step is a step in the right direction.

Hubby tells me it's time to take off my dancing shoes and go to bed. Party Pooper.

[RobinN]

Sleep easy.

[Bernard]

Great news CJR. I bet the glasses will help a lot. Hopefully the Depakote will be well tolerated.

[CJR]

Forgot to mention that we also were told to start the Modified Atkins diet. So I will need to be reading up more on that (as I never fell for the Atkins Craze).

Thanks everyone for all the support and encouragement. There were many days when I swear this site kept me from going completely NUTS. And that's hard to do. HeeHee

[Elaine H]

Wow!! 2 hours with a specialist, tha is indeed awesome! I was lucky to get 10 minutes with some of the people I've seen, it was a case of "Good moning, have you tried this drug? No?, take two a day and come back in 6 month....NEXT!" The guys I see in London spend a lot more time with me, but when I was first diagnosed in 1986, I felt like they were experimenting with me and all these drugs, I think it was Epanutin, the Doc said to me..."You may experience coarsening of the gums, facial hair, and acne" Me being the joker said to him.."No worries Doc, you won't be able to see the acne 'cause I'll have a beard!!! He didn't laugh.

Have a good dance, you must be well happy!!

Cheers
Elaine