Rayilyn,
Hi! This is Paula from PA. I have also had successful bilateral DBS -
four years ago - and I still haven't been able to get a remote. Sometimes I
think I'm "off" when the meds didn't kick in like I thought they should and
I place an inexpensive transistor radio near the implants and it's supposed
to buzz louder - lowest chanel on AM. The left implant - no problem. The
right implant always gives me a problem. I have been after my neurologists
(Philadelphia, PA) to get me a remote. They said they couldn't get the
insurances to pay for it. Otherwise, it would cost the patient $ 700. I
checked and my medicare is to be used first, secondly my husband has me on
his insurance plan at work.Now I don't know if Medicare being my primary is
the problem or what. I wish I had one though. But my batteries are just
like new, I was told, in March 2004. Medtronic Activa implants really
helped painful dystonia in my right foot and took away my
dyskenias............but, as you know, the disease marches on. (Champagne
breakfast at my house the morning after the announcement of a
cure..........all round the world invited). I hope we see it in our life
time. I want to know why and how this happened. My husband doesn't
understand why that is so important to me. He's more of a realist than I
am. I thank God every day that he is standing by me. He keeps our lives
interesting. The one thing he said that got to me was "I took my wedding
vows seriously.." Love helps alot!!!!!!!! Keep your chin up. Paula from
PA
----- Original Message -----
From: "Rayilyn Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, May 27, 2004 3:41 PM
Subject: Re: Medtronic Announces DBS Seminar Schedule
> I can't go to any seminar but can tell you Medtronic Activa implants
really
> stop tremor. One of my implants got accidently turned off and I was
ready to
> check out for good. My part-time CG got me turned back on after 2 tries.
I
> had tried 3 times with no luck. It reminded me what a miracle this is.
Bad
> tremors stopped immediately and my voice instantly got worse, and I can
barely
> walk or write, have double vision, but those tremors really drove me nuts.
I
> have been emailed and heard from people who gotten their lives back after
> bilateral DBS. I'm just grateful not to be shaking so bad, my
programmer is
> ordering me a machine that tells you if you are on or off or if battery
is just
> run down.Ray
>
> PS - I understand they now have just one chest implant for both sides of
> brain instead of two. also Medicare and my secondary insurance pay all
>
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