Title: FFA's new site
Birdbomb - September 5, 2008 04:58 PM (GMT)
EFA has a new site No More Seizures.com
Now I understand why people are so MISLED about the VNS. If the major E site can't/won't get it right, people will fall for the marketing bullshit everytime instead of doing their own research. This is really very irresponsible and may cause more harm than good.
After reading the entire site, this is FULL of misinformation. All anyone has to do is read the Physician and Patient Manuels to see the VAST differences.
This is really very disappointing IMHO. Here are just 2 examples, But every page has many errors and misinformation.
| QUOTE |
| Vagus Nerve Stimulation This type of treatment is designed to prevent seizures by interrupting the process of seizure development in the brain. VNS involves implanting a small, flat battery in the wall of the chest, linked by electrodes to the large vagus nerve in the neck. Tiny electrical signals are programmed to go into the brain via the vagus nerve. While it doesn’t cure epilepsy and may not stop seizures entirely, VNS has been of benefit to many patients and is worth discussing with your doctor if you are still having seizures with standard treatment. |
| QUOTE |
| The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagus nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagus nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it. Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past. |
Dispatch - September 5, 2008 05:56 PM (GMT)
:huh: OMG................
Dispatch B)
Dispatch B)
Bernard - September 6, 2008 02:22 PM (GMT)
Well, it doesn't look like the EFA was trying to make the site comprehensive or detailed. Still, for a site that purports to carry the aim of "NO MORE SEIZURES", you would think they might list some information about other treatment options. Color me unimpressed with this site.