bernard the same goes for you and your opinion,

IF YOU DONT AGREE WITH VNS TREATMENT KEEP IT TO YOURSELF!!!!!!!

YOU STATED: I am not playing doctor. Your veiled implication is repugnant - especially in light of the fact that you solicited opinions from people on forums when trying to decide whether or not to get your own VNS.

ok bernard, that is what forums are for, to find out what others experiences with the vns or drug or whatever it is you need others person imput on . so you mock me because i asked people about their personal experiences. so does that mean all these people asking questions on the forum are repugnant to you? just because we ask each other questions? we dont ask for medical advise, we ask for personal experiences, you have no personal experience with the VNS so lay off! i didnt make my decision lightly, i listened to what people said, good and bad, i listened to my doctor, i looked at my siezure history which isnt pretty, i talked to people i know personally that have them, i talked to my hubby, i talked to God a lot about it. and in the end, i decided it was the best course of action for me. its called gathering information and discussing it with those who care.

you state SUDEP has no relavence? come out of your little corner and come into the real world. SUDEP does have a lot of relavence to all of this. BELOW ARE 2 ARTICLES OF FACT FROM EPILEPSY .COM, THEY ARE WHY SUDEP HAS RELAVENCE. VNS IS AN OPTION FOR MANY OF THE PEOPLE THEY ARE TALKING ABOUT RIGHT HERE IN THESE ARTICLES. YOUR WHOLE ATTITUDE TOWARDS EPILEPSY IS DISGUSTING AND YOU STILL HAVENT EXPLAINED WHY ITS OK FOR YOUR WIFE TO DRIVE WHILE HER SIEZURES WERE NOT CONTROLED. VERY CONVENIENTLY LEFT OFF YOUR REBUTALS.

COMMUNICATING THE RISKS:

Telling persons with epilepsy and their family members about SUDEP is similar to the wise ferry captain coaching the passenger. The captain does not avoid discussing death – the risk is obvious to everyone. What the captain does is reassuring and useful. He focuses his message upon providing the passenger with the practical skills the passenger needs to have the best opportunity to preserve his life.

We have advantage over the captain regarding SUDEP. The crisis has not occurred yet, so the conversation can (and must) begin with specific positive steps persons with epilepsy and their families can take to improve their overall outcomes. These would include explaining how medications work, their behavior in the bloodstream, therapeutic ranges, and the challenges to be faced in maintaining proper blood levels day in and day out. These include talking about first aid, about how lifestyle habits can improve the chance of seizure control, and the importance of identifying and avoiding seizure triggers. These include the unambiguous goal of good seizure control, with a clear plan for further diagnostic workups and/or treatment changes if current efforts are not successful. These include educating the person about medication side-effects and how to recognise toxicity so these can be reported – and especially so these do not cause poor compliance.

Once patients and families possess the knowledge and skills they need to help protect life, then the physician is in the ideal position to introduce SUDEP as constructive therapy. SUDEP provides the physician with a compelling opportunity to illustrate why proper medical self-management skills are so valuable to the person and family. While these skills are designed to prevent seizures, they also afford important protections against more rare and serious complications in epilepsy, including SUDEP and status. The take home message, ‘Practising these skills daily can reduce your risk of harm from epilepsy. That puts your future in your control.’

So what does this mean for real world medical practices? First, patient and families can handle the discussion of SUDEP and other epilepsy risks when presented properly. Second, the discussion of SUDEP must be preceded by a boatload of patient and family education that provides the knowledge and practical skills needed. This understanding allows them to cope medically and psychologically with the knowledge of SUDEP. Third, knowing epilepsy carries risk is what cements patient and family skills into daily practice and insures better therapeutic outcomes. Finally, the time required to teach every family is not practical for the physician. Specially trained support personnel, such as nurses, health educators, and epilepsy association staff are the key to providing this care. Add them to your practice.

Written By: Robert J Mittan, Ph.D.
Seizures & Epilepsy Education (S.E.E.)
Catalina Rofloc Mittan, Former Executive Director,
Los Angeles County Epilepsy Society

 WHO IS AT RISK:

A systematic review was performed to provide evidence-based estimates about risk factors and incidence of SUDEP (Tellez-Zenteno, Ronquillo & Wiebe 2005). We searched Index Medicus, Medline, EMBASE, and the Cochrane database, for retrospective or prospective cohort and case-control English language studies exploring the risk factors and incidence of SUDEP in adults and children from 1966 to 2003. Of 83 potentially eligible articles 36 fulfilled eligibility criteria (29 cohort and 8 case-control studies). Salient findings follow:

Researchers do not use standard definitions of SUDEP. Standard definitions are essential for meaningful communication about clinical conditions. Some authors did not state a definition, some crafted their own, and others adhered to published definitions. A definition of SUDEP was explicit in 65% of studies, not clear in 29%, and not given in 6%. In many studies, the diagnosis of SUDEP was probable, not definite, because the most used definitions require post mortem data, and autopsies are performed infrequently in many settings. This suggests that the requirement of post mortem examination for a definitive SUDEP diagnosis may require revision. Specifically, how much certainty and precision does the post mortem examination add to the diagnosis of SUDEP?

The risk factors for SUDEP depend on the type of comparison. Studies exploring risk factors use one of two main comparison groups, i.e. non-SUDEP epilepsy deaths, and live people with epilepsy (PWE). Comparisons with non-SUDEP deaths explore best the circumstances surrounding death (e.g. seizures preceding death, place of death, AED levels at the time of death). Comparisons with live PWE explore best the lifestyle and clinical variables related to SUDEP (e.g. frequency of seizures, number of AEDs, use of other drugs). Therefore, the seemingly disparate risk factors found in these studies are really complementary.

High-risk and low-risk groups for SUDEP are identified. The risk of SUDEP is expressed as number of deaths per 1000 person-years. The risk is highest in studies of candidates for epilepsy surgery and epilepsy referral centres (2.2 to 10 per 1000), intermediate in studies including patients with mental retardation (3.4 to 3.6 per 1000), and lowest in children (0 to 0.2 per 1000). The incidence was similar in autopsy series (0.35 to 2.5 per 1000) and in studies of epilepsy patients in the general population (0 to 1.35 per 1000). PWE in the high-risk group typically suffer from more severe epilepsy, have frequent seizures, and require many AEDs. These factors are consistently associated with SUDEP (Langan & Nashef 2003; Lhatoo & Sander 2002; Stollberger & Finsterer 2004). The reasons for a lower risk in children require further investigation.

The contribution of SUDEP to overall mortality varies by risk group. As expected, in higher-risk groups SUDEP is a more frequent cause of death than in lower-risk groups. In studies of children, general population, epilepsy registers and autopsy series, SUDEP explained from 0 to 14% of deaths. In studies of epilepsy clinics, drug trials, epilepsy surgery or surgical candidates, and registers of patients with refractory epilepsy SUDEP explained from 29 to 75% of deaths.

Several aspects of SUDEP require further research. Prospective studies from seizure monitoring units could be fruitful. Standardisation of case ascertainment, definitions, and description of population sources is necessary to improve the analysis and interpretation of data. International panels could review the SUDEP definition and scientific journals could encourage researchers to adhere to standard definitions. Finally, researchers need to assess the impact that learning about SUDEP has on patients and their families, while exploring optimum risk communication and coping strategies for this infrequent, but devastating event.

Written By: Jose F. T

banffgirl

life is fragile, handle with prayer.