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WindsongMoonChild

The Time Has Come

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Hello Everyone!  A drive-by update on my current DBS situation...

 

I have a pre-op appointment at Vanderbilt Medical Center on September 29th and battery replacement surgery scheduled for October the 27th.  

 

At the time of my DBS surgery, my surgeon told me I could expect 3 - 5 years use out of my battery--as of July, I began my 8th year with it--I am content.  So, do I have any useful information for you?  I think I might...

 

About two years ago, I asked my doctor when I would know for sure when it would time to think about scheduling battery replacement surgery.  At that time, my doctor told me to give plenty of notice when my battery was "getting close" to needing replacement, in order to give everyone (the hospital, him, Medtronics, et al) time to get me scheduled without the battery actually going dead.  (Especially as I am still taking no Sinemet and, a sudden stop could be quite a jolt to my harmony!)  But, how close is close? I asked that very question, and he told me to let him know when the remote voltage reads, "Ohh, 2.70" (I have a Medtronics unit) and I should be fine.  Then, I spoke with my Medtronics rep, Ken, who gave me some other advice...

 

Caution, of course, is good--after all, no one wants to find themselves suddenly out of power and jerking around all over the room!  However, there are definite downsides possible to scheduling battery replacement a little too early.  The main two are:

 

1.  Replacing the battery too early, out of an abundance of caution, can mean "cheating" yourself out of battery time--and, who wants surgery every seven years, when they can have it every eight?!

 

2.  (And, perhaps, more importantly:)  If you schedule battery replacement surgery before the ERI icon appears on your remote (for a Medtronics unit), your insurance company may choose not to pay for the surgery, considering it an "elective," procedure rather than a "necessary" one.

 

My battery reading was 2.70 over a year ago.  Then, when I contacted my doctor, hospital, and Medtronics rep the first time about a replacement (a week ago now) it showed 2.60.  But, these things are never cut and dried or neat and easy though, are they?!  And, thus it is with a DBS battery.  How simple and convenient it would be if the battery ticked down one increment at a time, giving a clear delineation between the moment when a replacement is required or before, when it is definitely not!  Instead, the voltage staggers its way down, one day (or, minute!) showing 2.60, the next, 2.63 or, even 2.65.  What to do? What to do?  Well, as is my wont, I immediately texted a picture of my DBS remote to my go-to guy Ken at Medtronics and, he told me not to panic, I still had enough time, but I must schedule my appointments right away!  "But, the ERI icon isn't showing yet!" I texted back in a panic.  "Maybe not, but this just means you still have time to consult with your surgeon and get any preauthorizations you need, etc. and, by the time the surgery date comes around, it probably will be, or very close." 

 

As usual, he was right.  

 

At the end of the day, PD is a "snowflake disease" and, so, too, is DBS.  We all use voltage at a different pace, have different settings, and, therefore, place differing demands on our DBS battery--we will then, of course, also require battery replacement on an individual schedule.  Ken gave me an estimate of how much time he thought I had and, I'm going to be just fine I believe--insurance companies will often give a little fudge room, but perhaps not a whole year!   

 

I think that gets it for now, I will of course see you on the flip side with any new info. I may have to share, any new settings I have, etc, etc.

 

Regards,

Kim

Oh... The next generation of batteries is apparently still 3 years away, so looks like this time around I'll have the same ol' remote that tends to switch on in my handbag and run my AA's down at an alarmingly expensive rate!

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Thanks. I am a now deemed a candidate for DBS by MDS and I am starting that process.  Good to know the logistics involved. B)

 

I think I would be pretty worried about running out too.  Having your QOL dependent on that battery is like it is a vital organ! 

 

I hope it goes well for you.

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Hello Everyone!  A drive-by update on my current DBS situation...

 

I have a pre-op appointment at Vanderbilt Medical Center on September 29th and battery replacement surgery scheduled for October the 27th.  

 

At the time of my DBS surgery, my surgeon told me I could expect 3 - 5 years use out of my battery--as of July, I began my 8th year with it--I am content.  So, do I have any useful information for you?  I think I might...

 

About two years ago, I asked my doctor when I would know for sure when it would time to think about scheduling battery replacement surgery.  At that time, my doctor told me to give plenty of notice when my battery was "getting close" to needing replacement, in order to give everyone (the hospital, him, Medtronics, et al) time to get me scheduled without the battery actually going dead.  (Especially as I am still taking no Sinemet and, a sudden stop could be quite a jolt to my harmony!)  But, how close is close? I asked that very question, and he told me to let him know when the remote voltage reads, "Ohh, 2.70" (I have a Medtronics unit) and I should be fine.  Then, I spoke with my Medtronics rep, Ken, who gave me some other advice...

 

Caution, of course, is good--after all, no one wants to find themselves suddenly out of power and jerking around all over the room!  However, there are definite downsides possible to scheduling battery replacement a little too early.  The main two are:

 

1.  Replacing the battery too early, out of an abundance of caution, can mean "cheating" yourself out of battery time--and, who wants surgery every seven years, when they can have it every eight?!

 

2.  (And, perhaps, more importantly:)  If you schedule battery replacement surgery before the ERI icon appears on your remote (for a Medtronics unit), your insurance company may choose not to pay for the surgery, considering it an "elective," procedure rather than a "necessary" one.

 

My battery reading was 2.70 over a year ago.  Then, when I contacted my doctor, hospital, and Medtronics rep the first time about a replacement (a week ago now) it showed 2.60.  But, these things are never cut and dried or neat and easy though, are they?!  And, thus it is with a DBS battery.  How simple and convenient it would be if the battery ticked down one increment at a time, giving a clear delineation between the moment when a replacement is required or before, when it is definitely not!  Instead, the voltage staggers its way down, one day (or, minute!) showing 2.60, the next, 2.63 or, even 2.65.  What to do? What to do?  Well, as is my wont, I immediately texted a picture of my DBS remote to my go-to guy Ken at Medtronics and, he told me not to panic, I still had enough time, but I must schedule my appointments right away!  "But, the ERI icon isn't showing yet!" I texted back in a panic.  "Maybe not, but this just means you still have time to consult with your surgeon and get any preauthorizations you need, etc. and, by the time the surgery date comes around, it probably will be, or very close." 

 

As usual, he was right.  

 

At the end of the day, PD is a "snowflake disease" and, so, too, is DBS.  We all use voltage at a different pace, have different settings, and, therefore, place differing demands on our DBS battery--we will then, of course, also require battery replacement on an individual schedule.  Ken gave me an estimate of how much time he thought I had and, I'm going to be just fine I believe--insurance companies will often give a little fudge room, but perhaps not a whole year!   

 

I think that gets it for now, I will of course see you on the flip side with any new info. I may have to share, any new settings I have, etc, etc.

 

Regards,

Kim

Oh... The next generation of batteries is apparently still 3 years away, so looks like this time around I'll have the same ol' remote that tends to switch on in my handbag and run my AA's down at an alarmingly expensive rate!

Have you heard anything about the longevity of next gen batteries? Do they last at least 10 years before replacement? I meant the non-rechargeable ones.

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Cool!

 

I'm a bare minimum of 3 years out from DBS even being possible (FDA rules only currently allow it once you've been Dx'd for at least 4 years, and I'm only 1 year in).  And quite likely it will be farther out even that that, unless they decide that DBS somehow slows actual progression.  But your documentation of your experiences with DBS is greatly appreciated.

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Thanks. I am a now deemed a candidate for DBS by MDS and I am starting that process.  Good to know the logistics involved. B)

 

I think I would be pretty worried about running out too.  Having your QOL dependent on that battery is like it is a vital organ! 

 

I hope it goes well for you.

 

Yes, ESPECIALLY for me, since I take no Sinemet at all now... A few months ago, I accidentally turned it off and, ooohhh boy, did I know I'd done it within seconds!  It was quite sobering, really, to see the "real" me, sans DBS backup.  Thank you for the well wishes, I'm confident I'll be in good hands. :)

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Have you heard anything about the longevity of next gen batteries? Do they last at least 10 years before replacement? I meant the non-rechargeable ones.

Haven't heard anything on longevity (but, I will certainly ask Ken next time I talk to him), but I have heard that the next gen batteries will connect to a remote that is more like a smart phone--it won't be necessary to hold it to your chest to monitor it or make changes.  LOL... I'd just be happy, at this point, with a remote that doesn't have buttons that can be accidentally pressed just by picking up the case!!

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Cool!

 

I'm a bare minimum of 3 years out from DBS even being possible (FDA rules only currently allow it once you've been Dx'd for at least 4 years, and I'm only 1 year in).  And quite likely it will be farther out even that that, unless they decide that DBS somehow slows actual progression.  But your documentation of your experiences with DBS is greatly appreciated.

I don't understand that.  I don't know how they are judging me, but I have only been diagnosed for about 1 1/2 years, but I can easily point to events several years prior that are related (people just didn't look for it).  Maybe because they (VA) noted I had significant foot drop in 2011?  Anyhow, the VA is starting the process, but I have also shown some progression in the last year and had to rule out certain meds already. Maybe when I go through the qualification exams, they will rule me out.  :?

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Yes, ESPECIALLY for me, since I take no Sinemet at all now... A few months ago, I accidentally turned it off and, ooohhh boy, did I know I'd done it within seconds!  It was quite sobering, really, to see the "real" me, sans DBS backup.  Thank you for the well wishes, I'm confident I'll be in good hands. :)

I can actually relate (to some degree).  I had a Spinal Cord Simulator installed because of back pain.  I didn't know I had PD, and I didn't realize that I was compensating or weakness in my legs so much until I had mine reset and I could barely walk out the door!  Or, when I let  charge get too low, and I had to wait for a recharge, the pain was horrible.

 

As it turns out, PD was exacerbating my spine weak spots into something a lot worse.  A  lot of pain is gone with PD treatment.  I still have a weak spot, but a little more normal than being incapacitated.  Now, I don't rely on the SCS so much.  I am using a much lower setting and sometimes forget it is off until I get a little weak or pain in the legs.   Yet, I got off pain meds and traded that for a buffet of PD meds.  :rolleyes:

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I don't understand that.  I don't know how they are judging me, but I have only been diagnosed for about 1 1/2 years, but I can easily point to events several years prior that are related (people just didn't look for it).  Maybe because they (VA) noted I had significant foot drop in 2011?  Anyhow, the VA is starting the process, but I have also shown some progression in the last year and had to rule out certain meds already. Maybe when I go through the qualification exams, they will rule me out.  :?

 

This is from an article on the approval for Medtronic's DBS that was from February 2016.

 

http://www.massdevice.com/fda-expands-approval-for-medtronics-deep-brain-stimulation-for-parkinsons/

 

The expanded approval covers patients who have had a Parkinson’s diagnosis for 4 years and recently developed motor complications, or have long-standing motor complications that can’t be controlled with drugs.
Edited by stump

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Hmmm... she did mention I am advancing (which used to mean something good).  Reading on, it talks about QOL and advanced stages.  Also, the "or" statement above may be my ticket.  I still can't quite keep good control of my left foot curl.  Meds are helping it, for sure.  However, it tends to sneak back in at times every day; but I can at least have a little control to fight it.   I am getting close to requesting part time because I am slowing down again too.  I wonder if I have an absorption problem?  My morning meds seem to be less effective than the day meds even thought it is the same dose. 

 

in any case, if I am going to try for it.  It seems the struggle for QOL is the real question.  Really, I just want more QOL for my family.

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Kim -- appreciate the feedback.   Eight years is a nice long time for battery replacement.

 

On your remote... get a plastic case for it to fit into.  Or I can send you an "insulating material" and some Kydex.   Lay remote on a cutting board.   Place insulating material over it. Heat Kydex in

the oven, pull out and lay over remote.  It will form a nice form fitting  cover.  Now just rivet/glue/stitch that over to a base and you can slip your remote into it and no chance of getting buttons

accidentally pressed in your purse. :)  If you google "kydex knife sheath making kit" you'll find instructions.  :)

 

Batteries for the remote.  Energizer L91

 

Medtronic does also offer the "rechargeable battery" option. 

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My programmer told me to turn one battery backwards on the remote to keep them lasting longer. Of course you have to reverse the battery again to use the remote.  :mrgreen:

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My programmer told me to turn one battery backwards on the remote to keep them lasting longer. Of course you have to reverse the battery again to use the remote.  :mrgreen:

Isnt this like removing batteries once used and put them back to use the remote again?

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Isnt this like removing batteries once used and put them back to use the remote again?

Sort of, except you won't lose track of batteries if you keep them in the remote.

 

I think it would be a hassle to reverse them all the time. What if you are having a tremor, dyskinesia, or coordination problems and that is why you are trying to adjust it?  Then you have to fumble with batteries adding to the frustration.

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The DBS remote is almost identical to my SCS remote.  I've been through several remotes through the years. My first remote did OK with its internal batteries requiring me to change them every 6 weeks or so.  My second remote was going through batteries on a weekly basis so I had Medtronics send me another one.  This remote has been great (knocks on wood) as I only have to change the batteries about every 4 to 6 months.  I don't know how much you folks use your remotes but I use mine at least 20+ times a day.  If you're going through batteries rather quickly, try contacting Medtronics and see if they can send you another remote. 

 

Just a thought.

 

Dave

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The DBS remote is almost identical to my SCS remote.  I've been through several remotes through the years. My first remote did OK with its internal batteries requiring me to change them every 6 weeks or so.  My second remote was going through batteries on a weekly basis so I had Medtronics send me another one.  This remote has been great (knocks on wood) as I only have to change the batteries about every 4 to 6 months.  I don't know how much you folks use your remotes but I use mine at least 20+ times a day.  If you're going through batteries rather quickly, try contacting Medtronics and see if they can send you another remote. 

 

Just a thought.

 

Dave

So, you have a SCS and a DBS?  I currently have a SCS (lumbar) installed and starting the DBS process.  My MSD wasn't sure is an SCS is ok to keep in for this.  Sounds like it is. 

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So, you have a SCS and a DBS?  I currently have a SCS (lumbar) installed and starting the DBS process.  My MSD wasn't sure is an SCS is ok to keep in for this.  Sounds like it is. 

 

No, I do not have a DBS.  I was just pointing out that the remotes are similar in design and my history with the battery usage.

 

I see no reason why you can't have both devices implanted.

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