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Nevada Neuroscience Institute ConferenceOK, 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: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~ 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. .................................................. ....................... 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.
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 anti-epileptic drugs ( anti-epileptic drugs) Always check with your doctor or pharmacist before taking OTC and anti-epileptic drugs 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 anti-epileptic drugs 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.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? Last edited by RobinN; 10-30-2007 at 12:00 AM. |
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| 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.
First line treatment for epilepsy (recurrent, unprovoked seizures) Used to reduce the likelihood of seizure occurrence How well do anti-epileptic drugs 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 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ VNS Therapy has also been discussed here and more info is available at BirdBomb's VNS Message Board.
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? Last edited by RobinN; 10-30-2007 at 12:04 AM. |
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| 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 complex partial seizures 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 neurologist 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 anti-epileptic drug'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 neurologist exam Pain management Child like
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? |
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| 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
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
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 .................................................. .................................................. .... 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. .................................................. ....................................... 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!)
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback Would you like to help support this forum? Last edited by RobinN; 10-30-2007 at 12:09 AM. |
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| Dude, you went to hell and back for that info! 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"
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