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| Epilepsy Discussions of medical issues and treatments specific to Epilepsy. |
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| C'mon Brainy! Cant you handle the BIG BUDS?!?! Join Date: Oct 2006 Location: GreenLand Co-Op: NO Vendor: NO Patient: YES
Posts: 468
Rep Power: 950 | Epileptic Clinical Trials Epilepsy trial Article Last Updated: 07/08/2007 11:41:31 PM PDT If you have epilepsy, take daily medication but still experience uncontrolled seizures, you might be a candidate for a trial now underway at USC University Hospital. Neuropace, a company in Mountain View, Calif., has developed a device that's implanted in the skull and designed to provide "responsive stimulation" to the area of the brain that triggers epileptic seizures, attempting to stop the seizures before they cause symptoms. Called the RNS neurostimulator, the device is controlled by a battery and contains a computer chip designed to detect and store a record of your brain's electrical activity. Of course there are potential risks and side effects, and implantation is a 2- to 5-hour procedure, but interested parties can call 1-866-904-6630 or visit www.seizurestudy.com for more information. So, I had heard about this implant about ten yrs ago and My neurologist says that it has been going through trials for the past few years. I am hoping that I am eligible for the program. If it is sucessful, I just might get my drivers license back. The www.seizurestudy.com should answer q's and has a ph# to the office conducting the trial. |
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| C'mon Brainy! Cant you handle the BIG BUDS?!?! Join Date: Oct 2006 Location: GreenLand Co-Op: NO Vendor: NO Patient: YES
Posts: 468
Rep Power: 950 | Re: Epileptic Clinical Trials Note: this article says 'implanted in the skull'. However, when I had my interview, they said it may be able to be placed behind my collar bone. So Im hoping for no metal plate on my skull.... hehe (here comes franken greenman) |
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| Re: Epileptic Clinical Trials thanks for the report , good info, amazing whats new,,, be good help for severe deals, must not be to fun not being able to predict them.Sounds like yu have a good humor about it all,, maybe this willworkfor ya,, hope so like your approach,,, keep us posted lots of people here have seizure disorders. peace eagles |
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| WT Regular Join Date: Oct 2006 Location: ventura Co-Op: no Vendor: no Patient: yes
Posts: 67
Rep Power: 65 | Re: Epileptic Clinical Trials Is this like a brain mapping? Im interested in this too, but if its brain mapping ive tried it and i can say it really didnt work for me other than maybe give my doctor a better look at the siezures and where exactly they trigger. Did your doctor refer you to this? |
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| C'mon Brainy! Cant you handle the BIG BUDS?!?! Join Date: Oct 2006 Location: GreenLand Co-Op: NO Vendor: NO Patient: YES
Posts: 468
Rep Power: 950 | Re: Epileptic Clinical Trials orangeGumby- I am getting an actual implant, but they will use brain mapping to determine where to best attatch the wires to nerves. BM only results in pics of your brain. Yup, my Dr & I have been discussing surgery alternatives for about 9yrs. 'BRAIN MAPPING--is a set of neuroscience techniques predicated on the mapping of (biological) quantities or properties onto spatial representations of the (human or non-human) brain resulting in maps. All neuroimaging can be considered part of brain mapping. Brain mapping can be conceived as a higher form of neuroimaging, producing brain images supplemented by the result of additional (imaging or non-imaging) data processing or analysis, such as maps projecting (measures of) behaviour onto brain regions (see fMRI). Brain Mapping techniques are constantly evolving, and rely on the development and refinement of image acquisition, representation, analysis, visualization and interpretation techniques. Functional and structural neuroimaging are at the core of the mapping aspect of Brain Mapping.'--wikipedia What the Dr's have been telling me is that they will use brain mapping to determine where to best attach the implant. It works like a pacemaker in the way that pacemakers stimulate the heart with an electronic impulse. With this implant it works to stop the seizures b4 they happen. The implant is supposed to detect neuro impulses going to the seizure affected area and stop them. Or something like that. After all I didnt go to med school, but I am trying to understand this the best I can. I am a little aprehensive about getting my skull cut open. We shall see..... |
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| C'mon Brainy! Cant you handle the BIG BUDS?!?! Join Date: Oct 2006 Location: GreenLand Co-Op: NO Vendor: NO Patient: YES
Posts: 468
Rep Power: 950 | Re: Epileptic Clinical Trials UPDATE- I know its been a while..... but I cant make the people @ USC work any faster. Its funny (or not), they contact me so I can send them my complete medical records (5wks ago). This is so the director of the project can make a determination if I am even eligible for the procedure. So they must have had LOTS to do instead of look @ patient files (I have no idea what, just trying to quell my frustration), because I hadnt heard from them. This week on mon, I called and spoke to the asst to the head of the project. It was really cool to talk to someone who actually knew what was going on. She told me they were having a meeting on tues (the next day) to go over the files and (surprise) mine was on the top to be reviewed first (sure). Then I started believing her when she started asking me personal questions about myself, when I hadnt given any details (so I knew it was coming from my file). So SURPRISE! When my phone rang on wed (yesterday) and it was her calling ME!!! Evidently, the project dir wants me to come in for VIDEO EEG MONITORING. I will post about what that is and what it does after I finish this post and take a toke (and my puppy needs to go pee). |
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| C'mon Brainy! Cant you handle the BIG BUDS?!?! Join Date: Oct 2006 Location: GreenLand Co-Op: NO Vendor: NO Patient: YES
Posts: 468
Rep Power: 950 | Re: Epileptic Clinical Trials This was taken from emedicine.com: EEG seizure monitoring refers to continuous 24-hour EEG monitoring for diagnosis of known or suspected seizures. A single channel often records 24-hour ECG. The recording system may monitor other physiologic measures such as oxygen saturation. EEG seizure monitoring can be performed on either an outpatient basis or an inpatient basis. Inpatient monitoring often occurs in a specialized monitoring unit. Specially trained physicians, nurses, and technicians staff the monitoring unit. Rooms contain a vacuum supply, oxygen supply, EEG recording equipment, and one or more mounted video cameras. Wires connect scalp electrodes to a small lightweight box. The patient wears this box on a belt or shoulder strap when ambulating. In some systems, this box transmits EEG data to one or more additional electronic components within the patient's room. Ultimately, wireless or cable systems transmit bedside digital EEG data to a computer network. Wireless systems are less cumbersome for the patient than systems that rely on lengthy cables. Many systems will automatically store one or more hours of EEG data locally to the lightweight box when disconnection to the network occurs. The network includes one or more workstations, database software, and a file server. Staff members view, interpret, edit, and archive data from workstations within a separate control room or at the nursing station. A more extended network may enable staff members to view data from remote hospital locations or from outside the hospital. The monitoring unit may contain an activity room so that patients are not confined to a single hospital room all day. Continuous video and EEG recordings are documented for 24 hours or more. EEG and videos are generally reviewed every day. In some instances, portable video-EEG systems record patients in standard hospital rooms. Portable monitoring is important for the diagnosis and treatment of patients in neurology-neurosurgical intensive care units with refractory status epilepticus or unexplained encephalopathy. The patient, visiting family, or hospital staff may press an event button to mark the occurrence of a seizure. During and after a seizure, specially trained hospital staff members examine the patient. The examination focuses on memory, orientation, attention, language, and ability to perform skilled motor movements. The staff members also make certain that no seizure-related injuries occur. Seizures may be provoked by antiepileptic drug withdrawal, exercise, or sleep deprivation. If seizures become frequent, severe, or prolonged, the patient receives intravenous anticonvulsant treatment. Hospital personnel supervise monitoring and correct any electrode problems. The advantages of inpatient monitoring are that it may provide more information than outpatient monitoring and that certain specialized procedures require inpatient monitoring. Synchronized video recordings of the patient's behavior contribute significantly to diagnosis. Video recordings of the staff's examination of the patient during or shortly after a seizure are especially useful. Rapid antiepileptic drug tapering, ictal single photon emission computed tomography (SPECT), intracranial EEG recording, and intracranial electrode brain stimulation require inpatient monitoring. The principal disadvantage of inpatient monitoring is that it is more expensive than outpatient monitoring. In addition, some patients are less likely to have seizures outside of their natural environment. Candidates for inpatient monitoring must have events frequent enough to occur during the duration of their inpatient hospitalization. Video-EEG monitoring can determine the type of epileptic seizure. This is important because different types of seizures may require different medical therapies. Examples are differentiating absence from complex partial seizures or secondarily generalized from primary generalized convulsive seizures. EEG seizure monitoring may detect unrecognized seizures in patients who live alone or have minimal behavioral manifestations other than confusion. For example, complex partial status epilepticus may occur as a prolonged confusional state. EEG seizure monitoring may provide information about seizure frequency and may be more reliable with outpatient monitoring when patients engage in their usual activities in their natural environment. EEG seizure monitoring may provide information about the patient's response to antiepileptic drug therapy. In an inpatient EEG seizure monitoring unit, patients can receive intravenous loading doses. Adverse effects can be identified promptly, and drug levels obtained easily. Ineffective drugs can be discontinued quickly. Some patients have frequent drug-resistant disabling seizures. Epilepsy surgery may benefit these patients. Sometimes, preoperative scalp EEG monitoring fails to determine the location of the epileptogenic cortex. When preoperative scalp EEG monitoring fails, the surgeon places electrodes directly on the brain surface (subdural electrodes) or in the brain (depth electrodes). Intracranial recording may occur from more than 100 recording sites. Intracranial EEG monitoring requires a sterile environment and a high EEG channel capacity. Electrical brain stimulation may identify the location of vital brain regions such as primary motor cortex, primary sensory cortex, primary visual cortex, and language cortex. The surgeon must spare these vital brain areas during epilepsy surgery. Electrical brain stimulation is performed in the operating room during surgery or in the inpatient EEG seizure monitoring unit. An important diagnostic test for epilepsy surgery evaluation is the ictal SPECT scan. At seizure onset, an injected radioisotope blood flow tracer delineates the seizure focus. This test can generally be performed only during inpatient EEG seizure monitoring. Technical Considerations: Modern EEG seizure systems vary in methods of data storage, retrieval, and review. Outpatient EEG systems save EEG data on cassette tapes or solid-state memory. Inpatient EEG systems save data on hard drives. Inpatient systems usually consist of a network that links each patient room to a central computer server. A review station displays the EEG data, which may be displayed faster than real time for rapid review. EEG recorded in a digital referential format may be displayed later in a variety of referential or bipolar montages. Computer detection software identifies epileptiform discharges and seizures. This detection software greatly reduces the amount of EEG that needs to be reviewed. Detection is based on quantitative parameters such as wave frequency, amplitude, sharpness, rhythmicity, and duration. These parameters may be adjusted on a case-by-case basis or channel-by-channel basis to maximize sensitivity and minimize false detections. EEG and video data are archived on CD-ROM or DVD. Sphenoidal electrodes may be used for patients with temporal lobe epilepsy. These electrodes are thin, Teflon-coated, multistrand, stainless steel wires. Pain during the first day after the procedure is common, especially when chewing. Rare complications are a transient facial palsy, infection, or wire breakage. One method of application of these electrodes is as follows: * The wires are sterilized. * The distant 3-5 mm of Teflon is removed. * The region anterior to the ears is cleaned with antiseptic. * Lidocaine is injected along the path where the electrodes are placed. * The distant 5-mm tip of the wire is placed in the inner lumen of the tip of a spinal needle; the remaining wire is wrapped in a spiral around the outer part of the spinal needle. * The electrode is placed just below the inferior margin of the zygomatic arch and between the coronoid and condylar processes of the mandible, about 4 cm deep and about 2.5 cm anterior to the tragi of both ears. * The wire is inserted by pushing the spinal needle forward. * Once the wire is placed to the proper depth, it is removed from the spinal needle by pushing the tip of the wire out of the spinal needle with the trochanter of the spinal needle. * The spinal needle is then removed, and the wire outside the skin surface is attached to the skin surface with collodion and gauze. Diagnostic Utility: EEG seizure monitoring captures 50-96% of epileptic and nonepileptic events. It also establishes a diagnosis in 88-95% of cases. This technique is far superior to a single standard EEG, which demonstrates interictal epileptiform discharges in only 30% of patients with localization-related (partial) epilepsies. EEG seizure monitoring will alter management in 73% of patients. The most common changes in diagnosis are increased detection of nonepileptic episodes and generalized epileptic seizures. EEG seizure monitoring results in improved outcomes in 30-74% of patients after monitoring. So thats what I know right now. I have to get a referral from my neurologist to go. When I set it up I am asking lots of q's: Can I smoke MMJ? Do I have to eat hosp food or can my friends bring me In-N-Out? Do I get to exercise (walk around)? Can I bring my radio/books? I think its for 5-7 days.... wheres the shower and bathroom? Im gonna have electrodes on my head, is it a bath (Im a guy, I hate baths)? Is it a wirless unit so I can be mobile? Family/ friends visit (i will get bored with a bunch of dr's, ive been in n out of the hosp since I was a kid)? Anyway...... have some q's you think I should ask? Put em up I want to hear them! GM |
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