Im back from the neuro!

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Quite frankly,

your doctor is off his rocker. :soap: It's time, methinks, to doctor-shop. They are NOT Gods. *slapping forehead*

Pardon me ahead of time for my little :twocents: OK........a bit more than that. :bigsmile:

If there is one thing that really gets my goat, it is doctors that do NOT listen, and PAs that are equally stupid.

It is entirely possible for the seizures to be that deep down in the brain, and not be caught. For heaven's sake, my EEGs came out perfectly for 40+ years. Yet the doctors KNEW I had E....they'd seen it themselves.

PNES (non-epileptic seizures) are NOT stopped by meds, as your psych doc told you. They are, in simple terms, brought on by other things--sometimes stress, sometimes mental trauma--and there is NOT a biological cause for them as opposed to epileptic seizures.

Any reputable neurologist knows the difference between the two. If they do not, then they need to go back to school.

Don't EVER let a doctor/neurologist/epileptologist talk down to you. YOU pay THEIR salary. You're doing a great job going in prepared. Keep it up, as knowledge IS power.

But seriously, go doctor-shopping if you need to. Being made to feel like you don't know what you're talking about isn't necessary. You should be able to carry on a coherent, mature conversation where both of you can talk calmly and rationally. If the doc can't do that........bye bye!

Not an easy thing, especially if your options in the area are limited. But, for your own sanity.......NECESSARY AND WORTH IT.

Take care,

Meetz
:rock:
 
The only Epilepsy Doctors I found in the state of Nebraska are the following:

I put in pink if Ive already been to them, or why I wont be able to see them.. one is a pediatric neuro. I have to stay within the state, because our insurance only covers instate drs.


Doctor Information


Pediatric Neuro...
Richard V. Andrews, M.D.
RA Neurological, PC
11930 Arbor St
Ste 200
Omaha, NE 68144-2938
UNITED STATES
402.697.1601

Been to this office, and they send you off the UNMC Drs, who I am seeing now
Matthew Kniss, M.D.
Neurology Associates, P.C.
2631 S 70th St
Lincoln, NE 68506
UNITED STATES
402.483.7226

(Pediatric Neuro)
Paul D. Larsen, M.D.
University of Nebraska School of Medicine
PO Box 982163
Omaha, NE 68198-2163
UNITED STATES
402.559.9539


This is the Dr I am now seeing...
Deepak Madhavan, M.D.
University of Nebraska Medical Center
982045 Nebraska Medical Center
Omaha , NE 68198-2045
UNITED STATES
402.559.4086

This dr is in the same office as my dr, but Ive heard my dr being the "head dr" he will probably go based off of what my dr tells him to do....
Najib Murr, M.D.
Nebraska Medical Center
982045 Nebraska Medical Center
Department of Neurological Sciences
Omaha , NE 68198-2045
UNITED STATES
402.559.4086

(Pediatric Medical Center)
Young P. Oliver, M.D.
University of Nebraska
8200 Dodge St
Children's Hospital and Medical Center
Omaha, NE 68114
UNITED STATES
402.955.5372

I already saw this dr... and he wouldnt budge on any testing!
Sanjay P. Singh, M.D.
Creighton University School of Medicine
Creighton Neurology - CUMC
601 N 30th Street Ste 5300
Omaha , NE 68131
UNITED STATES
402.280.4399

Pediatric Neuro
George J. Wolcott, M.D.
Boys Town National Research Hospital
555 N 30th St
Omaha, NE 68131
UNITED STATES
402.476.2021
 
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Wow, it looks like Nebraska could be worse than Colorado when it comes to medical specialists.
 
Yeah we lived in western nebraska when I was born, and we had to travel to Denver CO and the Scottsbluff area, then found a pediatric neuro that was located in Omaha, Ne. We traveled clear across state to see him. He was the best! :) Then we moved closer, to Kearney, Ne and he moved further east! He then went to Kansas City, MO. So we went to see him there. We then moved east again, and went to Lincoln Ne where we live now, and he then retires! :rolleyes: But, the last time I got to see him, I was 19 years old. :) It was at that time, we found a local neurologist here in town, but when it came to testing, like doing EEG's or VEEG's, they didnt do that here. You got sent to Omaha, Ne. where we currently are seeing my neuro now. Not much to choose from here in this state. Wish we had insurance that would allow us to go out of state.
 
Kristin,

I can imagine the frustrations you are having with your neurologist. It is a pity that there are not many other neurologists in your area that you could try.

I live in a small town with only 2 neurologists in my area which is the neurologist I've been seeing for the last 10 years & his colleague. The only tests available here for epilepsy are basic MRI, EEG, Catscan. My local neurologist tried me on 5 medications before he suggested I look into the surgery & referred me to an epitologist. The epitiologist I was referred to is the head of the epilepsy program at one of the hospitals in the city. The hospital where the epitiologist works & where I had my surgery is a 3-4 hour drive but it has more tests available for epilepsy which is where I had all my pre surgery tests (eg Video EEG, PET Scan, SPECT scan, different MRIs).
I currently go to the epilepsy clinic at the hospital where I had my surgery for regular check ups & I'm due to go back next Monday for another checkup. My parents are driving me to the hospital & we usaually go to the city & back in the day which does turn into a long day but my parents & I treat it as day out :).

The question to him also, was it is possible to not have the seizures be picked up my EEG if they are too deep within the brain?

His response, is No... if there were seizures there, the EEG would pick it up.
Geez, surely as a neurologist he should know an EEG isn't 100% accurate. I know many times it has been mentioned on here that an EEG won't always pick up a seizure because sometimes the seizure activity is deep in your brain.

As long as the Keppra is controlling the seizures, Im doing well. I did get upset that last year he told us I would never be able to have a grand mal or complex partial seizure again, but this year, today... he said I still can have those kind of seizures. Really dude? Why the change? LOL.
I hope that the Keppra xr continues to help control your TCs & complex partials but how does your neuro know for sure you will never have another TC or complex partial again?
I think epilepsy is a really unpredictable medical condition & we never know for sure if we will have a seizure.
 
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That neurologist is full of crap if he told you that you couldn't have a Grand Mal -- I mean, you have a history of such (in infancy), plus he noted epileptic activity on your EEG. Just because the activity on your EEG was apparently partial, there's no guarantee that it couldn't generalize from time to time.

Thank God we have a team of neuros and an epileptologist (spanning 2 continents) that know their stuff and are honest enough to admit if they may have made an error with diagnosis or prescribing the wrong med for his condition (which can easily happen with epilepsy, especially childhood syndromes since not all symptoms display immediately).

But we had one crappy pediatrician for 2 years in the States. He would do stuff like prescribe medicine with a high sugar content (the syrup form), just 5 minutes after discussing that Jon was on the Keto diet and that he could smell the Ketones on his breath. And THEN, rather than just admitting, "Oh, sorry, I forgot" he gave some song and dance that he didn't know what ratio Jon was on, and that on some ratios kids could have sugar. IDIOT! NO KID on the keto diet gets sugar EVER. Another time, I took Jon in with clear symptoms of a sinus infection (thick bloody snot and fever of 104), and he said he didn't have a sinus infection because they're always preceded by a cold, and since Jon hadn't had a cold, he couldn't possibly have a sinus infection (however, it was Spring, and Jon is highly allergic to oak pollen). So, go home with no meds. Four days later back in to pediatrician with worsening symptoms. He then said there was a mild ear infection and sent him home with Amoxicillen, which is essentially useless for a sinus infection. So...4 days later, Jon is in ICU at All Children's Hospital with Status Epilepticus and...you guessed it...a raging sinus infection that should have been treated a week earlier. Even after the entire team at All Children's confirmed sinus infection based on all the testing they were doing, the pediatrician still wouldn't admit that's what he had -- he said that an MRI doesn't provide conclusive proof of a sinus infection.
 
Not much to choose from here in this state. Wish we had insurance that would allow us to go out of state.

:agree: At least come here to Denver to see my epileptologist @ UCHSC.
 
Wow, it looks like Nebraska could be worse than Colorado when it comes to medical specialists.

What do you mean? There are plenty in the Springs and Denver area!
 
I just looked at the card of my dr who I have been seeing since November 2010.... He was the partner of the head dr for epilepsy. That person then moved. Dr. Singh.

But my dr now has these titles to his name....

Assistant professor
Director, The Nebraska Comprehensive Epilepsy Center
Medical Director, MEG Center at the Nebraska Medical Center

Those are all listed on his card now.

Now, you would think a dr who specializes in Epilepsy would know alot about what Epilepsy can do. Last year he is telling me I cannot ever have a grand mal or complex partial seizure, I have non epileptic seizures, referrs me to a psych dr. That psych dr says I have epileptic seizures. He then tells me to switch to Lamictal, which I have a allergic reaction to. He says its not the lamictal, and once I tell him what my primary care dr says, he gets upset and admits he put me on Lamictal becuase I have anxiety related issues which is causing my seizures!?

This year... since taking the Keppra XR since May 2011, that same month I got off the Lamictal due to the reaction, Ive had no seizures. Been very well controlled. He tells me a few days ago... in August 2012, Yes, I can have a complex partial seizure or a grand mal seizure. No, the seizures he witnessed me having on the Video are not epileptic seizures, they are non-epileptic seizures. But then the Keppra controlls those!? Which Ive found out that no anti epileptic drug can control epileptic seizures. Then he goes on to tell me the reason why he kept me on Keppra in March 2011, was because he saw epileptic activity on my EEG. Then why the hell would be keep me on the Keppra for a month, and want to take me off in April 2011, to try out the lamictal, if he saw epileptic activity like he is saying today, but back then it was all talk about non epileptic seizures? And he also adds that when I asked him about if it was possible that what he saw on the video during my VEEG in March, were epileptic seizures, just too deep in the brain to be picked up, since I have not had any more since he put me back on the Keppra? His response... "no, all seizures that are epileptic will be picked up on a EEG"... "What you had there were non epileptic seizures".

Well, explain to me how I could get those seizures when I was taken off both seizure medications and then once put back on the Keppra, they all disappear? Like the psych dr said, if they were non epileptic seizures, I would still be having them. Keppra cannot control non epileptic seizures. After three months of seeing her, she said there was no need to see her. What I was having was epileptic seizures.

I swear, this guy changes his story left and right.

If only we lived in a state that has great epilepsy drs!
 
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I can't even believe he works at an Epilepsy center and said that all seizures can be picked up by an EEG. You need to move to New York. We have so many doctors here. The doctor you're seeing now only has 7 years of experience(according to vitals.com). You need to somehow find someone who has experience in the double digits. My pediatric neurologist said she sees people of all ages. So you might want to try calling one of the ped neuros offices and ask if they treat adults. I know that sounds silly,buy you have to find a experienced doctor.
 
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My Neurologist is the best, far as I'm concered. Of course he's the only one I've seen but I have great experiences with him and he's got over 18 years experience in Neurology and a lot of experience in other areas like Psychiatry and in strokes. He answers my concerns best he can, will explain things in terms I understand, is thorough and doesn't take chances with my health. I was originally referred to a woman Neurlogist & I'm sure she's good but I think it was meant to be with the Neurologist I ended up with.
 
What do you mean? There are plenty in the Springs and Denver area!

Yes, but Colorado is a HUGE state and has only a few cities. So even if there are many in those cities, they are very far for some people to get to.

My parents live out here with me now (we are originally from Jersey) and driving three hours or more to specialists is very inconvenient. They have several different health problems.

Comparing this to NJ: If you drove three or four hours anywhere, you were out of the state!
 
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:agree: It doesn't make a bit of sense to me. Sometimes seizures don't show up with just plain EEGs and VEEGs, and like P-Funk said, sometimes our skulls have to be cracked open and electrodes placed inside to get a full spectrum of one's brain activity. I was in the hospital one week with those inside my head before I had enough seizures that they could evaluate. That is what I had to go thru to make sure they located where my seizures originated. The pain that some of us have to go thru before the docs (?) listen to us!?


The thing that confuses me over seizures is this: If my tests come back negative, will they just say I have non epileptic seizures? What makes them decide to think it could possible be epilepsy not showing up on the EEG or a nonepileptic seizure?
 
Yeah I will have to do more investigating into the other drs. I had a great pediatric neuro and I swear, he knew more than 10 drs combined! I wish I had a dr like that again!
 
Yeah I will have to do more investigating into the other drs. I had a great pediatric neuro and I swear, he knew more than 10 drs combined! I wish I had a dr like that again!

Was he the doctor who saw you until you were 19?

I hope my doctor never retires or moves to another state. That'd be a nightmare for me :cry:
 
I saw a Pediatric Neurologist from when I was a tiny little thing to the age of 19. His name was Dr. Richard Torkelson.

http://www.ucomparehealthcare.com/drs/richard_d_torkelson/


The Best dr in the world! He has since retired, but was the best dr! Since the last time Ive seen him, I have now seen 3 different neurologists. One being a local neuro here in town, which takes care of the easy things, but when it comes to EEGs, VEEG,s MRI's, etc thats when they want you to go to the UNMC, which is where Im going now. Since going to UNMC, I am now seeing the second neurologist there. For us, it really wasnt a bad thing for us to drive to see him. We learned alot from him and he was the kind of dr who listened, and any concerns we had, we didnt feel like we were being rushed, or not heard. He is a great man!
 
i dont get ' none ep sezures ' if i got told that id be like well what is wrong with me then!!! i just think all sezures are linked to epilsey! and i dont think them eeg will fully pick up everything its just like every test ive had is always wrong!
 
Boy this struck a nerve with me. Did it make you mad to get that non-epileptic diagnosis? That puts the fault and the cure smack in your own lap, with no meds necessary or helpful. Who amongst us wishes this to happen to us? I guess if one has had terrible trauma in their life, I can understand this, but if that was never present, I guess those of us with normal EEG's are all thinking, "I think I'll just have a seizure today and get some attention."

I've never had anyone tell me that, but I don't have anything odd in my eeg's either. 4 times I've had seizures because there were no meds or not enough meds in my system. Am I telling myself I'm ok because I don't miss any doses? Is that really what's happening to you too?

Somebody tell us that's not true. If that's true, then I've wasted 51 years of my life on these medicines that make me so tired, depressed so much I don't want to go on. Wasted!
 
For me, ive been on medication since the age of 18 months old. I dont know anything other than that. I do know that when I was being weaned off medications, I would have seizures. Once my dose was put back up, or put on a different medication at a higher dose, the seizures went away. Heck the "Nice Years" for me was between the ages of 17-29. 12 years being on Keppra and Carbatrol. Nice combo of medications to control my seizures. The only time I recall having any seizures was in 2001, when I was 19 years old, I went out with a friend all night long, (due to lack of sleep) I had a grand mal seizure. Mom found me on the floor with slobbers coming out of my mouth, my lips were blue and I wasnt consious. The next time was a month after the birth of my second son. Due to also not getting enough sleep at night I had a complex partial seizure in the early morning hours. But those two times in the 12 years of being on those two medications, were the two times I recall having "Big seizures". So I thought that was pretty darn good.

When my neuro came walking into my hospital room on the second day of the VEEG and told my mother that what he saw on the video, was not registering on the EEG, and that he is going to referr me to a psych dr, I was out of it. I remember him walking into the room, and speaking, but I cant recall all the details of what was said that day. Prior to him walking in, I had a big seizure and there were tons of nurses in the room. I blacked out, and woke up to finding a nurse putting ativan in my IV. But after the seizures calmed down and I rested, I did have a talk with my mom about what the neuro had to say. I disagree'd with it. I did all my research, and went to the psych dr and everything I learned, weather it be through CWE, the internet, google... or even what the psych dr told me.... if the seizures he is saying are "non epileptic" seizures, I would be having them no matter what anti seizure medication he puts me on. Which at the time kind of confused me too. If I did have non epileptic seizures, then my psych dr had to ask me why would he put me back on a anti seizure drug used for Epilepsy seizures? That alone didnt make sense. But again, that was in march 2011. Now comes August 2012. We sit down and talk with him about all of this stuff. Now he is saying he kept me on the Keppra because he saw "epileptic activity" on the EEG, which says I can have any kind of seizure. But in march 2011, he said over and over to my mother that becauase I didnt have a grand mal seizure or complex partial seizure during the VEEG, I would in no way ever again have a grand mal seizure or complex partial seizure again. he even assured me within 2 weeks of being released from the VEEG, I can drive again! It just doesnt make any sense. I was upset and angry at first. But then after going to the psych dr, and she assured me what I had in the VEEG are NOT non-epileptic seizures, and that the Keppra is working, and controling them, they are epileptic seizures. What matters to me is that they are being controlled, and Im feeling good about going each day with no seizures. Thats all that i care about. If my neuro wants to think these seizures are non epileptic seizures, Im not going to fight him over it. He can write it on a huge building wall for everyone to see. I know what I know because its my body. Not all drs are genius's when it comes to knowing exacly what is going on with each person's body. So the way I look at it, Im doing good.. might as well go on the best I can with my days and be happy the Keppra is controlling the seizures! Who cares what others think! :)
 
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