Nevada Neuroscience Institute Conference

[Bernard]

OK, with BirdBomb's permission, I'm reposting some notes she took at the Nevada Neuroscience Institute Conference, Saturday, July 10, 2004 at the Sunrise Hospital in Las Vegas, NV:

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This conferance was well attended and the small auditorium was nearly full. Most of the members from my local epilepsy support group, headed by Dania and Janier Alvarez, were there as were several well known neruologists and neurosurgeons. Quite an impressive turn out, if I say so myself.
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Dr. Simon Farrow, MD, Chief of Neruology, Sunrise Hospital and Medical center began the conferance with "You and your Medications"

First and formost; THERE'S NO SUCH THING AS A FREE LUNCH You and your doctor may be able to control your seizures with medications.

• This will not be free
• Someone has to pay for the medicine
• You have to remember to take it properly
• There will be side effects
• You may have to do tests to keep track of the effects of your medicine

If you take your medicine properly and understand as much as possible, the chances of you and your doctor being able to control your seizures with minial side effects are much improved. Generally, the cost to you of knowing about your medicines and dealing with them properly will be less than the cost to you of not doing it properly. It's no good at all leaving the responsibility to your doctor and the medicines. It just won't work that way. You need to be an informed partner.

There is no epileptic drug that is good for all types of seizures.

Your medicine has side effects and may react with other medication. Over the counter drugs often do NOT mix well with AEDS ( anti-epileptic drugs) Always check with your doctor or pharmacist before taking OTC and AEDS Make sure you get your blood tests done. No need to become toxic or not have enough medication in your system.

Take your medications the same time EVERY DAY and try to schedule your blood work the same time, each time, too. Varying from this will make the blood results differ.

Medications effect the way you think and act.

Many HMO"s do not allow certain new drugs because of cost, even when a new drug may be more benificial. VOICE-you have one, use it! Don't be afraid, it WILL get results. Put pressure on the HMOS or doctors for proper treatment.

Over the last 5 years many exciting new AEDs have found their way onto the market , more so than the last 70 years! The down side is we do not know the long tern effects these drugs will have. Seek out knowlege and TALK to your doctor,make him/her aware of new things and treatment options. With proper treatment, quality of like begins.

 

[Bernard]

Dr. William Marks, Jr. MD, Assistant Professor, University of California, San Franciscio, Board President Epilepsy Foundation Of Northern California, was next. "When Medications Aren't Enough: Other Treatment Options, including VNS"

1% of the world has epilepsy. 10% will have a seizure. The goals for treatment are; no seizures, no side effects.

• Epilepsy Treatment in 2004
• Medications (Antiepileptic Drugs, AEDs)
• Epilepsy surgery
• Vagus Nerve Stimulation (VNS)
• Ketogenic Diet
• Investigational Therapies

Medications (AEDs)
First line treatment for epilepsy (recurrent, unprovoked seizures)
Used to reduce the likelihood of seizure occurrence
How well do AEDs work in regards to complete seizure control
1st drug----------->40%
2nd drug---------->20%
3rd drug-----------<10%
4th drug-----------<5 %
25% of seizures are drug resistant

Epilepsy Surgery
Used since the 1800's
Modern techniques: safe & highly effective
Several different types of procedures
Removal of lesion causing seizures (tumor, abnormal vessel blood, brain malformation)
Removal of electrically irritable brain tissue
Other procedures

Vagus Nerve Stimulator (VNS)
Device similar to a pace maker sends small electrical pulses to the left vagus nerve in the neck
Vagus nerve delivers electrical impulses to brain, where seizures start
VNS seems to reduce electrical irregularities
VNS Procedure
Take approximately 1 hour
Uses general anesthesia
Outpatient procedure
Chest/axillary border incision for pulse generator
Neck incision for lead
Performed by neurosurgeon or vascular, ear-nose-throat, or general surgeon
VNS
Programmed non-invasive
Turns on & off automatically; 30 seconds 0n / 5 minutes off
Can be activated by person feeling seizure or caregiver using magnet
Used in combination with seizure medication
VNS: Side Effects
Usually occurs only during stimulation part of the cycle
Voice change (hoarseness) is most common
Coughing, shortness of breath, throat "tickle" also occur but lesson with time
Does not cause medication-type side effects
(there are many more but you must do your research)

Ketogenic Diet
Specialized and strict diet
High fat, low protein & low carbohydrates
Makes the blood acid & produces chemicals called ketones
Can decrease & sometimes stop seizures in some patients
Most commonly used in children

Investigational Treatments
Experimental medications
Brain stimulation therapies
Other treatments

Summary
More treatment options for epilepsy available than ever before...and more on the way!
- Epilepsy surgery
- VNS
- Ketogenic diet
- Other treatments
If your seizures are not fully controlled and/or you are experiencing side effects, seek evaluation at an Epilepsy Center

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VNS Therapy has also been discussed here and more info is available at BirdBomb's VNS Message Board.

 

[Bernard]

The next speaker was Dr. Stuart Kaplan, MD Neurosurgeon, Western Reigioal Center for Brain and Spine Surgery, "Grids and Strips: Epilepsy Monitoring and Surgery" http://www.BrainAndSpineOnline.com/

Epilepsy
New onset seizures: 80/100,000
70 - 80% can be controlled medically
500 - 800,000 patients in the US have medically intractable epilepsy
60% will have epilepsy - "tendency toward recurrent seizures unprovoked by systemic or neurologic insults
Epilepsy: Incidence of 45 / 100,00 per year
90% of all new cases in children less than 20 years old
16 - 62% of unprovoked seizures will recur within 5 years

Infantile Spasms
Uncommon, incidence 1 / 3,500 children
Onset between 3 months and one year old
May be idiopathic or symtomatic
Difficult to control and standard anticonvulsants not generally helpful

Myoclonis Seizures
Usually occur in the first decade of life, not first year of life
Incidence; 1 / 1,000 children
Lennox Gastaut Syndrome
Ketogenic Diet / Corpus Callosotomy

Complex Partial Seizures CPS
May begin at any age but frequently in first decade
COS occur in 23 - 66% of all childhood epilepsies

Patient Selection
Poor response to drug therapy or ketogenic diet
Medically intractable seizures
Significant alterations in Quality of Life


Phase 1 Evaluation
Scalp EEG recording
CT/MRI Scans
Neuro Psych Evaluations
Functional MRI
Video EEG Monitoring
PET Scan

Best Surgical Candidates
Medically intractable seizures
Localized seizure focus
Cortical resection in "safe" area
Goal of Epilepsy Surgery
Remove Epileptogenic Focus
Spare Critical Functional areas of the brain (speech, sensormotor)

Surgical Options
Focal Cortical Resection (VNS is used first before this is tried)
Intractable seizures due to cortical dysplasis, benign tumoe of cerebral cortex
Motor mapping done to avoid post op defict

Temporal Lobectomy (Unsed mainly in adults)
Seizures arising from single cortical focus
Focus can be removed without causing deficit
Seizure free or seizure control in > 80%
In past, not done before late teens, early 20's
Increased risk intellectual deterioration/behavior problems
Language laterlization

Hemispherectomy
Focal seizures from single diseased hemisphere
Utilized in hemiplegic patients
Improves seizure control
Does not worsen physical disabilities
Seizure free: 67%
Improved: 21%
May develop hydrocephalus
Motor: usually regain ambulation
Language: age dependant

Corpus Callosotomy (This type of surgery is used AFTER the VNS. More for drop attacks and children)
Seizures nonlocalizable or bilateral in origin
Single or two state operation
Disconnection Syndrome

Phase 2 Evaluation
Subdural Electrodes
Depth Electrodes
Functional Cortical Stimulation
Subdural Strips
Lateralization
Placed via burr hole
Subdural Grids
Silastic Sheets
More surface coverage
Electrodes brought out through dura
Localization and Functional Mapping

Potential Complications
Infection
CSF leak
Hematoma

Cortical Mapping
Continuous EEG Monitoring for up to 2 weeks
May need to decrease AED's
Coordination between Neurosurgery/Nerology for surgical plan

Subdural Stimulation
Stimulation of brain via implanted electrodes
Not painful
Able to cooperate with stimulation

Nursing care
Seizure monitoring
Prevention of infection
Neuro exam
Pain management
Child like

 

[Bernard]

And the last speaker was Dr. Robert S. Fisher, M.D., Ph.D. Director Stanford Comprehensive Epliepsy Center, Stanford University Medical Center, Palo Alto, CA "What's New In Epelipsy?"

Areas Of Advancement
Genetics
What is a Gene, and Why do They Matter?
Genes are the blue prints for our tendencies.
Genes tell cells what proteins to make
Proteins make the structure of our body
Proteins also control excitability of brain cells

Uses For Genes in Epilepsy
Diagnosis of certain epilepsy conditions
Genetic / family counseling
Using Genes to predict response to medicines
Future development of gene therapy

Epileptogenesis
The process by which injury leads to later developement of Epilepsy
Brain remodeling
Often after a delay
Prevention, not suppression

Localizing the Seizure Focus

New Drugs
Some Old Remedies for Epilepsy

• Lichen of horses
• Genitals of seals
• Hippopotamus testicels
• Blood of tortoise
• Discarded skin of the lizard
• Feces of the crocodile
• Blood of a recently stabbed gladiator

AEDS Timeline (approximate)
1850 - Bromide
1915 - Phenobarbital
1938 - Dilantin
1953 - Mysoline
1958 - Zarontin
1966 - Valium
1971 - Tegretol
1975 - Depakote
1994 - Felbatol
Neurontin
Lamictal
Gabritrill
Topamax
Trileptal
Keppra
Zonegram
2000 - DP-Valporate
ganaxolone
harkoseride
loreclezole
losigamone
NSP1776
NW1015
pregablin
remacemide
retigabine
rufinamide
SKB 204269
stripentol
talampanel
valrocemide
vigabatrin
others

Target

• No seizures
• No side effects

New Drug Delivery Methods
Seizure-Activated Drugs
1. Seizure releases "stuff"
2. Inactive Drug
3. Drug activated by "stuff"
4. Action at the seizure focus

Liposomes
1. Make a solution with tiny bubbles of drugs
2. Attach to homing device
3. Inject into bloodstream
4. Liposomes stick to target and slowly release drug

Cell Transplants
Parkinson's
Huntington's
ALS
MS
Chronic Pain
Epilepsy
Other

Brain Stimulation
VNS
Deep Brain Stimulation
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There was a Q& A period following and some interesting points were made and agreed upon by the panel. But ALWAYS, check with your own doctor.

1. Marijuana can prevent seizures, however the current side effect can be quite disrupting to your lifestyle, namely jail time.

2. Alcohol consumption is okay in moderation. An occasional glass of wine or beer may not effect you.

3. The Atkins diet is very similar to the Ketogenic diet. They both make the blood more ACID thus reducing seizure activity.

4. MEDTRONIC studies are open and looking for guinea pigs for their deep brain stimulation. They are being held at Stanford. You must travel once a month on your cost.


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If there are errors, I'm human. I am just going by my notes and I write like chicken scratch!

If there is a Neuroscience conference in your area, I strongly suggest you attend if at all possible. The new innovations in the treatment of Epilepsy have not all been covered here and most are glossed over. There is just SO MUCH out there and for your doctors to keep abreast with these innovations is difficult at best.

Knowledge is POWER. YOU'VE GOT THE POWER!

Birdbomb (Whew!)

 

[Birdbomb]

Dude, you went to hell and back for that info! :lol: I hope someone gets something from it.

No matter how crappy you may feel, we are finally on the cutting edge of epilepsy treatment. Just keep yourself and your doctor informed.

There is no "One cure fits all"

 

[speber]

Nice job Conner!...that's a hand-cramp and a half!

Seriousdly, thanks for the hard work on that one! If I can find the booklet from the conference here in town I'll see about scanning it into a pdf and putting it up for grabs! Pretty sure it's around somewhere!
:rock:

 

[Birdbomb]

Dude, that was such an informative conference, I wish I knew when the next one was happening. They are well worth attending.