Kelly,
The only problem I may have in getting a VNS installed is that I don't ever have auras and don't see how the magnet could be of any use to me. I beleive that a person may be having a seizure and a person nearby could use the magnet to prevent the seizure from progressing, but what if you're alone. Do you think that w/o the use of the magnet the reduction of seizures wouldn't likely be 50%, maybe 0-25%?
Tim Baldwin
____________
From: Kelly Porter <kellyporter@
To: epilepsy@yahoogroup
Sent: Tue, May 4, 2010 11:53:05 AM
Subject: Re: [epilepsy] eliminating no possibility
My epileptologist has been amazing. I have never doubted her. She just
went into private practice last year after running the level 4 unit at
the university of utah's level 4 unit. She has contacts at most
hospital in the area and is highly respected.
My seizures did reduce dramatically after my surgery and then began to
get worse again over time. This leads me to believe that not enough
tissue was removed, leaving some small area that continued to produce
seizure activity and then progressed. It is this progression that
concerns us so much, because as we all know seizures don't generally
halt progression all on their own.
As far as the VNS goes for most people she stated that it cuts seizure
activity in half. About 1 in 100 people become seizure free. The
biggest thing about the VNS is that it is used in conjunction with dug
therapy for most people, but allows them in time to reduce the amount of
medication they are required to be on to maintain control. The nice
thing about this is that the VNS does not come with the side effects of
all the drugs, allowing for the therapy to modified for the patient
without concern for severe side effect increases. There are some side
effects but nothing like our AED meds!!!!
Kelly
TIMOTHY BALDWIN wrote:
> Kelly,
>
> My problem seems alittle like yours.In '96 I had an unsuccessful l. temporal lobotomy.My seizures remained at the same frequency one every 3-4 weeks,I never changed to a lesser amount of medicines.Untill I changed to a different neurologist who reduced my three medicines to just two,that reduced my frequency of seizures.Currently I'm on Vimpat and Keppra XP.Wonder if just one would create another drop in seizures.I've thought of having a secondary surgery,but haven't heard very much about it,or peoples success or unsuccess having it done.I remember back in '96 when VNSs were real new and my doctor asking me if I was interested in trying it.I said No.Surgery on brain wasn't any good,how was I going to get my neck cut open.VNS seems to have been quite a success since then.I'd like to hear any finding that you hear of.
>
> Timothy Baldwin
>
>
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