My Epileptologist / Neurologist ...

[RobinN]

I was thinking about this Bernard, and I know I have noticed that the neurologist turns to Rebecca and asks what she wants to do. Being 15 she responds that she doesn't care she just wants the seizures gone. So then the neurologist just suggests another med. Difficult to argue with that.

[Tate]

Hello Everyone

Since i was 15 i have had so many neros and various specialists, i have pretty much had the one GP.... who i must say is the bomb!!! Luv him!!!

My new nero team I have been with for about 18 months are unbeleiveable!!!!!!!!!!! (i am just too lucky to have them)

I live 10-12 hours drive from where my nero team are i live in Australia and my nero team are in syndey and I am in a rural area...

I am undergoing surgery on the 12th nov, so i have had alot of tests and appt to deal with over the last 12 months and the last 6 months intensivly!!

Due to my distance my nero Ep and surgeon have made the extra effort to put time aside to combine my appt as a team when i do have to travel all the way and organise for me to have all my tests within the same period of time.

They also phone me and have gotten assistants to call to help with materials needed for surgery, I have had telephone confrences with just them and me also confrences with my local GP present... I couldnt ever ask for better ever!!!

they are all caring compassionate and wonderfull in their own and unique way.....

I AM SO SO SO LUCKY
and I do appreciate them soooooo much as i deffinatly have experienced the opposite the side.... (and its deffinatly not as sunny)

but negativity and bagging someone will get me know where....

If you fail; try try try again.... that way you never failed trying

and to be honest I wouldnt want to walk a mile in their shoes either..... the pressure one in their postion would be under would make their shoulders very very very heavy!!!!! (imagine every 5 mins having to look at someone that wants it to all be better knowing you cant fix every one or, knowing at times you could have peoples lives in your scalple... that i would not like to under take ...)

take care all
and good luck to those who need to find a better suited nero

[RobinN]

Let us know when you return Tate. Thinking about you. Glad that you are in good hands.

[Trinity]

Another Aussie here and I have to say I absolutely love my neurologist. My friends mother also has epilepsy and visits the same dr. She does not really like him much at all but continues to see him because she says that he is very knowledgeable - she just thinks he'd be more interested in her if she had a brain tumor. I on the other hand have always found him to be impressive. I feel that I can discuss anything with him related to my epilepsy and I also feel like he is not going to judge me. There have been times when he has supported me in ways that my family aren't even able to, emotionally speaking. I'm not saying that we sit there laugh and eat popcorn during our visits but he listens to me and that does mean a great deal.
I guess all in all, I figure that some people just gel with one dr over another just as we do with all people in life.

[RobinN]

That support must be quite comforting. I have found it with one doctor, however he isn't covered by our insurance. I do believe that has allowed him to be more human.

[Trinity]

Tate, just wondering why you need to travel all the way to Sydney? I see you're in Byron Bay - aren't there any good neurologist's on the Gold Coast or Brisbane even. Maybe it's just that Sydney is so enticing (I live in Sydney so I can understand that) but i'm assuming your doctors are so darned good that you are willing to travel the distance.

[keyna]

This is the first team I've had that I love, I like them, so does my mom. When I go I don't feel like I'm being rushed, you know like get the patient in and get them out as fast as possible.(I've had alot of BAD Dr.'s)Before this Dr. I was seeing a Dr. in Kingston,NY, that Dr. almost killed me, no joke, I was in the hospital for 3 weeks and for the first week and a half they didn't know if I was going to live.

After that I was outa Kingston, a friend got me an appointment with Dr. Anthony Ritaccio, a head Dr. at the Neurosciences Institute at Albany Medical Center in the Epilepsy Program. I have to admit, before I even met him I was thinking oh great here we go he's probably some pompass jerk, but he wasn't. He and Loretta Ciraulo RN, MS, FNP spent almost 2 and a half hours with me and my mom.

I have appointments once every 2 months, and he comes everyother appointment, otherwise it's just me and Loretta. I don't mind, because he made sure that it would be OK with me, he didn't just say from now on your just gonna see Loretta, and If while I'm there something serious comes up, or Loretta thinks he needs to be appraised of something right away she goes and gets him, and he comes.

When I'm seen I'm listened to, I mean really listened to. If I need to cry I can cry without feeling stupid.

If I call the office, I ask for Jen and I say hi this is and I don't even have to say my last name, she knows who I am. Loretta always calls me back the same day, and If she calls me and I don't answer the phone she calls my mom(she has written permission).

They also make sure to consult with my other Dr.'s, and keep them up to date on my care.

So, no I'm not better, and my seizures are uncontrollable, but my Dr.'s are nice and I can tell that they really care that's one thing I can't complain about!

[RobinN]

Keyna - that is a glowing report. It is a good testament that the system can work when compassion is at the helm.

[3tomaras]

My epileptologist makes me feel like I'm being put in a test tube for his convenience. My neurologist I've known for 25 years and I take him into full confidence when decisions come up about work/stress/seizures/life. The epileptologist will not share test results with my neurologist...if that's not "teamwork"...

[Bernard]

3tomaras, I have heard from other sources that it is almost a stereotype that epis have that kind of attitude about them (and neuros dont).

[angel]

what if you ask questions and the neurologist seems panicked and hurried while running to his big book of meds? then you start to feel bad for him because he seems so rushed for his time....lol

[T's Dad]

The poll in this thread needs an "All of the above" option!

T's Dad

[skillefer]

I really like my neurologist. He always asks me about what's going on in my life, any stressors, what my diet has been like,and nagging me about smoking. But hey, that's what docs are supposed to do right? He's never considered changing my meds, and he encourages me to take prenatal vitamins. Also, he actually signed up to be one of the providers under my insurance plan. And I'm his only patient that has that particular insurance. So do I think he's great? Yup. Oh, that and the fact that the longest I've had to wait to get in to see him is about 10 days....and he's even come in on one of his days off just to see me. So yeah...Dr. Jaffer is FANTASTIC!!!

[LynnW]

I didn't vote because there is no selection for "takes personal calls on his cell phone during appointments and responds in a dismissive and defensive way to questions about side effects of anti-epileptic drugs".

[RobinN]

Time for a change...

[epileric]

I know that tone of responding defensively & dismissively whenever any question is asked. I used to think you had to have that to be a neurologist.

In 44 years of seeing neurologists I can only think of 3 that I have any respect for. The rest either have no clue what they're talking about (one even told me I didn't have E & took me off my anti-epileptic drug's) or have an extreme arrogance & are extremely condescending.

[RobinN]

This quote keeps running though my head today:
"When you always do what you always did, you always get what you always got."

I think we need to start rocking the boat a bit, and tell them that this is just not acceptable behavior any longer.

[epileric]

I usually tell them why I find their behaviour unacceptable for a professional but it never helps. Of course I refuse to keep going back but I've found out they consider such remarks as "hostile" & have put that in my file.

I"ve finally gotten myself a great neurologist but I had to walk out on so many to find this one.

[mishela2008]

neurologist #1

After my first Grand Mal when I was 13, I had the same neurologist for.. well, ever. He was great. I had total and complete faith in him. He recognized right away that I had an increase in activity around my cycles, and he was lucky enough to catch crazy activity on an EEG after my 2nd episode. I deliverd 2 healthy babies while under his care. Both pregnancies were uneventful. If and when I had a problem, my calls were returned in a timely manner. My husband is military though and so we had to leave the area after many years in his care. Bummer.

So here we are in Idaho...
Onto Epileptologist #2

Who has an ego the size of this lovely state!
He claims he might not read my old EEG the same way, so now their is debate about what kind of Epilepsy I actually do in fact have. Since he is a big shot Epileptologist, and my old doc is just a little old neurologist, he is just not as educated. Aparently there is no such thing as my seizures being influenced by my mentrual cycles. So, new guy takes me off of old meds... I agree, it makes sense, but I am VERY nervous. He puts me in for a video EEG. BUT he doesn't take me off of my meds, so of course he doesn't see anything! I'm still not really sure what he was aiming for?! And I'm not really sure why I spent 4 days in the hospital, hooked up to an EEG moniter, taking Dilantin ?? And if and when I call with an emergency, he calls back, only to lecture, and tell me to a medication that has a drug interaction with the medication I am now currently on. So, I am having some serious doubts about the man, lets say that! And I miss my old neurologist! And the silly militarys insurance won't let me switch! Boo!

[RobinN]

Aparently there is no such thing as my seizures being influenced by my mentrual cycles.

We were told this same thing by neurologist #1. I then started attending the University of Internet Research and found out different. Just put in Menstrual Cycle and Seizure in a search , or hormone seizure , and you will get more info than you ever wanted to know.