Results of MRIs, CTs, EEGs in diagnosing epilepsy

RobinN

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Many people with epilepsy have clear MRIs, CTs and even EEGs.
Bernard - do you have a really good article that states this. UCLA told my husband otherwise, and he is not willing to budge even after I have shown him articles on EF, pubmed, etc. Would be grateful if you would share.
 

brain

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Robin:

Epilepsy - No Clear Causes

Causes: In about 70 percent of cases there is no known cause. Of the remaining 30 percent, the following are the most frequent causes:

* Brain tumor and/or stroke.
* Head trauma, especially from automobile accidents, gunshot wounds, sports accidents, and falls and blows. The more severe the injury, the greater the risk of developing epilepsy.
* Poisoning, such as lead poisoning, and substance abuse. For example, more than 5,000 persons each year are reported to suffer seizures caused by alcoholism.
* Infection, such as meningitis, viral encephalitis, lupus erythematosus and, less frequently, mumps, measles, diphtheria and others.
* Maternal injury, infection or systemic illness that affects the developing brain of the fetus during pregnancy.
*(More of causes of Epilepsy)

Neurosurgery Today Article


About half of the people who have one seizure without a clear cause will have another one, usually within six months. You are twice as likely to have another seizure if you have a known brain injury or other type of brain abnormality. If you do have two seizures, there is about an 80 percent chance that you will have more. If your first seizure occurred at the time of an injury or infection in the brain, you are more likely to develop epilepsy than if you did not have a seizure in that situation.

Causes of Seizures

Epilepsy is a group of disorders in which there are recurrent episodes of altered cerebral function associated with a seizure. The clinical manifestation of these seizures varies in effect from brief lapses of awareness to prolonged bouts of unconsciousness, limb jerking and incontinence.

There is no clear cause of seizures in many cases. However, in up to 40% of people with epilepsy there is a family history of epilepsy in a close relative. Genetic factors are therefore a strong feature in the cause of seizures.
 

Bernard

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Bernard - do you have a really good article that states this.
My statement was based upon several years of reading patient posts in E forums quoting their doctors when their tests return clean results. What did UCLA say exactly?

A clear EEG just means that seizure activity was not recorded at the time the test was done. Doesn't mean that epileptiform activity isn't happening at other times.

*However*, if a seizure is observed during testing and no epileptiform activity is recorded, it may be an indication of "pseudo seizures" (PNES/NES).

German EpilepsyMuseum said:
The EEG of a patient with a cerebral disorder often looks different. In patients with epilepsy, the EEG often (but not always) has characteristic differences. However, if a patient has a normal EEG, it does not prove that that person does not have epilepsy.
Modern methods for diagnosing epilepsy

The National Society for Epilepsy (UK) said:
'Positive' and 'negative' results

While the EEG can show if someone is having a seizure at that moment, it can't show what happens in the person's brain before or after the test. So unless the person has a seizure, the test might not give much information.

The test may come back 'negative' or 'normal', which just means there was no change seen in brain activity at the time. This does not mean that the person does not have epilepsy.

Some people who do not have epilepsy may have some irregular activity on their EEG. So a 'positive' result, where there is irregular activity, does not always mean that the person has epilepsy.
Information on epilepsy: Electroencephalography (EEG)

The National Society for Epilepsy (UK) said:
Brain scans - sometimes called 'brain imaging' - may be used to help find the cause of someone's seizures. The scans produce pictures of the brain, which might show a physical cause for epilepsy, such as scarring on the brain. But for many people, a brain scan will not show up a cause for their seizures. Even if nothing unusual is found on the scan, the person may still have epilepsy.
Information on epilepsy: Diagnosing epilepsy
 

RobinN

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What UCLA told him/us, was there is a way even without a seizure, for a someone with experience to tell whether one was prone to having epilepsy or not. I was told that even though she had an abnormal EEG at another doctors office, the test most likely wasn't of the quality that they have at UCLA, and that the reader of that scan possibly did not have the expertise that UCLA does in reading such tests.

We have an MRI that has heterotopic gray matter that even I can tell is an abnormality. USC has kindly called it a birthmark. UCLA told me matter of fact that the abnormalities that were evident are not of the magnitude to be a focus of seizures. Though even I could see the heterotopia.

We were told that meds were not going to help and that therapy would be the best.

It's spilt milk, but after all of my online digging, seems to contradict all the knowledge that UCLA shared with us. It has been a disappointing experience. I had high expectations of their "team" and they let me down. In a 20 minute interview, they had Rebecca pegged. She was homeschooled at the time, and that seemed to make a few points. She is a competitive skater and that seemed to make a few more points. She had a memory lapse during the appointment, I answered a few questions to fill in the gap, and that gave her a few more points. Then a math question was thrown at her, and she struggled with the answer (being in front of her parents, with a strange doctor, mind thinking I am dumb, what is the answer, everyone is looking at me, what did he ask me....) and she received the final point.

There were no actual points, but I read the overview of the "appointment" interview, and it was quite skewed, and misrepresented the situation to make one think of PNES.
I was just learning about the difference, and did not know, what I now understand to be true.

I was told hormones did not play a part in seizures, and that putting a child of this age on appropriate natural hormones, should never be done. EVER! They made a mockery of the doctor that tested her to be low in progesterone, and that I was a fool to follow his advice.

I leave this at this time, without finalizing my thoughts, but this experience left me with 6 months of unanswered questions.
 

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Sounds like whoever you dealt with at UCLA has his/her mind made up from the beginning that your daughter had PNES.

Did they try to do a VEEG to capture simultaneous EEG and video evidence of a seizure to be sure?
 

RobinN

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yes...only after I requested it. They hooked her up at 3 pm and taken off by noon the next day. No seizures were captured. Certainly did not suggest that it should be done according to her cycle. I felt that it was only done to appease me. They still told us there was no evidence that epilepsy or a seizure disorder was a concern. They told me to call back if she had a seizure with loss of bladder control.

It is a shame that they use opinion to make their diagnosis. They did not ask me to authorize previous tests so a comparison could be made. No doctors ask to look at previous blood work to see if there is reason for concern, with all of the highs and lows conflicting each other.

I made a commitment to Rebecca and myself after that experience, that no one would send me off with wrong information ever again. I now know enough to ask more intelligent questions.

Sorry for the rant... sometimes it simmers to the surface.
 

brain

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Robin:

This is a Seizure and Epilepsy List:

e-Medicine Seizure & Epilepsy List


These articles are very specific and are very
long reading.

What are available to read without having
to subscribe are:

Neurology - Seizures And Epilepsy Articles


Absence Seizures

Antiepileptic Drugs: An Overview

Complex Partial Seizures

Epilepsia Partialis Continua

Epilepsy and the Autonomic Nervous System

Epilepsy in Adults with Mental Retardation

Epilepsy in Children with Mental Retardation

Epilepsy, Juvenile Myoclonic

First Seizure in Adulthood: Diagnosis and Treatment

Frontal Lobe Epilepsy

Identification of Potential Epilepsy Surgery Candidates

Outcome of Epilepsy Surgery

Partial Epilepsies

Posttraumatic Epilepsy

Preeclampsia and Eclampsia

Presurgical Evaluation of Medically Intractable Epilepsy

Psychiatric Disorders Associated With Epilepsy

Psychogenic Nonepileptic Seizures

Reflex Epilepsy

Seizures and Epilepsy: Overview and Classification

Seizures in the Emergency Department

Simple Partial Seizures

Sudden Unexpected Death in Epilepsy

Temporal Lobe Epilepsy

Tonic-Clonic Seizures

Vagus Nerve Stimulation

Women's Health and Epilepsy
I would strongly recommend bookmarking
the mainpage and taking your time to
read it all.
 

RobinN

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Thank you Sharon for the suggestion. I do believe however that I have read about most if not all of the above subjects. I ruled out what did not make sense, and I worked to connect the dots. I have a fairly good feeling that I have a working knowledge of what is happening with Rebecca. Now to find ways to get her back to where she was for 14 yrs. I just need to add in the burden of hormones, which add their own stress factors
 

brain

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Have you ever read the book from
Dr. Martha Morrell?

Women With Epilepsy?

It speaks about the menstrual cycles,
and it is a good book, and if your daughter
is going through this phase, it might be
something worthwhile to buy and read
up on it.

A AIM Chat with a Neuro & Epi last year
got me to get that book - both of them
KNOW Dr. Morrell and recommended me
to get it and we found one super cheap
on Amazon - and I snatched it; I even
told Dr. Morrell herself that book was
written 100 years too late!

I had TEARS streaming down my face
when I read that book! I felt like going
back to all those Neuros and slamming
that book in their faces!

I strongly recommend that to be a part
of your book shelf; if you have a daughter
or are a woman who have Epilepsy.

I can't put it all into words - it's more than
words could say.
 

RobinN

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Thank you both, I will put this on my next Amazon purchase. It looks like a good one to have right now.
 
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brain

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YES Bernard - but you can get it cheaper!
I got mine for $4.25

:D
 
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Stacy

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Bernard,

Don't post it as a resource... ORDER the book for ME! :) I love you.
 

brain

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ROFL @ Stacy ...

Stacy - you will LOVE this book; I
MEAN IT!


At first I thought Robin was going to say
get me one too ...

:D
 

RobinN

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sounds like a good idea... I mean since you are already getting one, why not two.
 

Bernard

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I must be having trouble with my vision... I can't read the last two posts! :pfft:
 
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