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WindsongMoonChild

4-Year DBS Follow-up

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CoachT,

We are all excited and happy for you both. This is a topic I'm sure we will all face, and we thsnk you for sharing it with us.

Bless you on your journey!

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O.K., here goes...

 

I promised myself, no more sharing only the airy-fairy upside of DBS, I would share it all, or give nothing at all.  So, here's the latest...

 

On the 7th of August, I turned my right body (that's the left side of my brain) up by one increment to 1:3 in an attempt to correct a tremor that had begun to show itself in my right leg as my meds wore off/kicked in.  For about a week, the tremor left me and my toes were at rest, so all seemed good.  But, by about August 13th, I started to notice the big toe of my right foot pulling up... well, it has slowly gotten worse, until I have to stop walking and "will" it down, or it causes a lot of pain when it happens spontaneously as I walk.  So, what to do?  If I turn down, the tremor will most certainly return.  The tremor was tolerable and infrequent, but still, not ideal... so, today, I have dialed back my Sinemet by 100mg.  I won't know if this will do the trick for at least a week, I imagine, but here's hoping, because if it doesn't, it'll be either, a) tolerate the tremor, or B) back to the doc's office.  

 

So, there you have it... the balancing act continues.  I'll keep you posted.

Kim

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Kim, d'ya think in the 5 years since your DBS they have made significant improvements in the procedure and it's results, or not so much? I would have to think that every one they do, they learn a little bit more, ya know?

From what I understand, this procedure has been in use in Europe for way longer than it has here and, my neurosurgeon told me that it has been in use here for nearly twenty years.  So, from what they tell me, it's no longer "experimental," or anything like it, so I imagine individual surgeons are becoming more and more skilled with the surgery.  As to improvements in technology, well, I can tell you that there was one offered to me on the very day I had my surgery done.  My neurosurgeon came to see me to ask if I wanted the new battery technology, or if I wanted to go with the older (tried and true as it were) battery.  I was prepped and ready for surgery, so that was a lot to think about at the eleventh hour, I can tell you!  

 

The new battery was rechargeable.  Hmm... so, I asked, what did that mean exactly?  Well, it meant that, rather than needing to be replaced in three to five years, it may not need to be replaced for significantly longer.  But, how much longer?  They didn't yet know, the technology was so new.  O.K., how long would recharging take and how was it done?  He said it would take about an hour a day and I'd have to be plugged in to an outlet of some sort.  Oh.  So, if I didn't recharge daily, I could run out of juice?  But, if I stay with the old type of battery, I would eventually need to have surgery to replace it?  My decision was this:  The recharging process takes about an hour a day... but, that's time I will have to schedule into my life, which may sound easy, but given the erratic sleeping habits of a Parky, it may not be as do-able as it would seem at first blush.  Since they didn't know how reliable the batteries were then, it was entirely possible I could wind up having surgery in a few years to replace a rechargeable battery just as I would a non-rechargeable--and, in the meantime, I'd be hooked up to an outlet for an hour a day.  Until the technology had been in use for a while, I went with the old battery.

 

This means that I have to keep an eye on my battery levels (currently at 2.91v - they must be replaced at 2.60v) and, when the level drops close to replacement time, schedule surgery.  Will I go with a rechargeable battery then?  Yes.  IF the batteries are tried and true by then. And, IF the surgery a second go-round is as uncomfortable as the first!  And IF the new batteries have a good long, proven lifespan and are relatively easy to recharge.  Otherwise, I may just go with a replaceable one again - if it is still available. 

 

So, five years in, I think the procedure is probably about the same, but I'll bet there are a lot more experienced surgeons out there doing it!

Kim

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Oh... I was offered only one battery, not two.  I didn't know then that two batteries were an option.  So, my wires run down only one side of my head and to the one battery, which it's looking like (according to my Medtronics rep and all round DBS Guru) I'll get about five to seven years out of at the rate I am using it.  The battery was, post-operatively, for *me only* the most painful part of the recovery.  My neurosurgeon did tell me, however, back five years ago when I had my surgery, that they were in clinical trials for a wireless DBS.  That would mean no, "roto-rooting" down your scalp and neck to the battery.  This sounded fabulous to me.  I do not know if the clinical trials are over, if this is an option yet, or anything more than that it was in the works five years ago... but, it did sound like a BIG improvement on the wires down the neck thing.  IF, that is, it works as hoped!

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Wires down the neck like mine sound annoying but they really aren't so bad for me.  Rather, it's the three entry points into the top of the skull that have been capped and leave a protrusion of 1/32 of an inch or slightly more  which worry me. Several times I've bumped my head and thankfully the blow missed these bumps.  I also wonder about absorbing a common household electrical shock and what might be the result.  Last week I filled 16 solar powered batteries in series and fretted over the result if spilled distilled water connected the positive and negative poles...a migthy jolt of several hundred volts that could kill a human whether or not a wire ran to his or her core.

 

The secret to DBS success, as Kim will tell you is in the neuro-adjuster's machinations post installation.  That it seems to me must be vastly more sophisticated what with the thousands of procedures now performed, than my guy is  telling me about.  I intend to talk with him about a data base for the various procedures and follow-up at our next programming session.

 

BTW here in DC we have two or three reknown surgery teams at Georgetown, George Washington University Hospital and Johns Hopkins in Baltimore. If any PWP or ones caregiver needs a place to stay that is super convenient to all three, just ask.  You'd be most welcome during your evaluation, post-op or convalescence in my spare bedroom w/ private bath.     R. 

Edited by Rogerstar1
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"Wireless"........well THAT'S a no-brainer. You watch, pretty soon you'll be able to link it to your I-pad for maximum control. Or even be linked to a "specialist" for fine tuning.

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I just talked with Medtronic, and for now? No wireless........ although we can hope. The re-chargeable battery sounds nice, but you'd be royally screwed if you wanted to go camping, or if your power was out due to a storm. I can see me now, big storm, power's out city wide, and there I am, wandering the streets looking for someone with a generator......... pssst, hey man, do you think I could possibly bumm a few watts off your generator, to keep my brain working???? Could you help a guy out with a few watts of power? lol

 

I agree Kim, I hate it when my toes curl. Mine tend to want to curl under, when I've been on my feet too long. Dinner has become quite the adventure, trying to keep food on the utensils, you don't even want to watch me try to eat soup... lol  At restaurants, I generally order things like grilled sandwiches and fries, or fish&chips, basically things I can use my hands/fingers for, because that way I have somewhat more control, and I don't have to embarrass myself with making such a big mess.

 

I am so ready for the DBS........ the more I ponder it, the more I am sure that it is the right choice.

Edited by AB-Normal
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Roger! You're a bit of a daredevil aren'tcha?!  Filling solar powered batteries?  Risking bumping your noggin?  (Although, on that front, I must admit that I am a little more cautious when lifting things down from a shelf or something--standing back in case something were to fall and bonk me on the noggin!)  I completely agree with you... post surgery adjustments are most definitely the key.  I once met up with my Medtronics rep in a Starbucks for a very minor tweak that made a world of difference to me.  (And, the coffee was good, too.)  My wires  seem to tighten up in cold weather--ever experienced that??

 

Musicman, I like the way you think!

 

Michael, your power outage imagery had me laughing audibly... and, I feel the tone of your response; it's disconcerting to feel dependent on something!  I believe, in the final analysis, that is why I elected to forgo the rechargeable option.

Edited by KimAgain

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I can see it now, Roger outside trying to fill his batteries with sunshine.

 

I can see us, if we had the re-chargable batteries, fighting the yuppies with cell phones at Starbucks for outlet space, just for a quick re-charge with our coffee.......

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Just a small note on the charging of the battery.  DBS uses the same type of battery technology that is found in my SCS.  I do not have to be plugged into the wall to charge.  My charger is charged separately.  When I need to charge, I attach the charger to a belt that is held over the battery.  I am able to move about the house while I charge.  I've even charged while I'm sleeping.  The charger can recharge my battery several times before it needs to be charged.  Say all that 10 times real fast (She sells sea shells down by the sea shore).

 

Dave

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Dave, cool!  I thought there had to be some way to recharge that didn't require being hooked up to a wall outlet!  This info makes the rechargeable battery way more appealing next go round!  Thank you.

Kim

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Dave;

That might be well and good, as long as you have access to the power grid. Where my concern lays, is when that power grid is offline. Due to weather and/or natural disasters. I can think of many incidents in the last few years when due to weather and/or natural disasters, whole communities and cities have lost access to the power grid for several days/weeks. This is much more common that most people realize. I prefer to NOT put myself in a situation where I might become another victim/statistic because I chose the new "cool" technology.

Also,  if you charge the battery to much and/or too often, it will develop what's called a "Memory Effect", decreasing the batteries capacity, and overall life. In my opinion this creates too many potential problems in order to extend the replacement time by 50% or so.

Bottom line, you still have to replace the battery anyway, so in the long run, what are you really gaining? Not much, other than the "COOL" factor.

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Michael,

 

The rechargeable battery is not new and "cool" technology.  I have no desire to split hairs or argue with you.   If you think the technology is crap, that's your opinion. 

 

My suggestion is to do some research.

 

Dave

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I have no problem with the technology, I'm just pointing out that it has drawbacks. I use rechargeable batteries all the time in emergency communications, but there I can just pop one battery off and pop a fresh one on, but that's a world of difference from a battery implanted in my body. So for myself, based on many years experience handling emergency communication as an Amateur Radio operator, as well as my knowledge of battery design and application, I'll stay with the standard battery unit when it comes to DBS.

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Michael,

 

The Activa RC neurostimulator contains an electronic circuit-board and is powered by a rechargeable battery that can last for up to nine years.  This means that most Medtronic DBS patients with an Activa RC device will be free from replacement surgeries for nearly a decade.  The patient’s only task is to choose between daily or weekly battery recharge options.  My recharger will recharge my battery about 4 times before it needs to be recharged, therefore you could go off the grid for a minimum of two weeks and possibly a month.  You don't know everything.  Do your research about this technology.

 

Dave

 

P.S. You can't overcharge these batteries. Once charged the charging system stops.

Edited by Daven

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If I had a standard non-rechargeable unit, I would have had surgery about 3 years ago based on my battery consumption.  As such, I will probably get another 2 years out of my battery which will put it at the 7 year mark.  That's pretty good based on the power consumption that I use on a daily basis.

 

The rechargeable batteries are also smaller and if you had one of these implanted under your skin you would know - smaller is better.

 

Dave

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Dave;

My original post on this subject was a statement of my opinion, interspersed with a bit of levity. I then tried to explain my opinion in very basic language. You seem to have taken exception to both my levity, as well as my stated opinions. Normally I'd say hey, no problem, to each, his own. Then you had the audacity to make the following statements:

 

"The rechargeable battery is not new and "cool" technology"

 

I would consider it "NEW" technology, considering it was only approved by the FDA in March of 2009

5 years ago (per Medtronic). Whereas the non-rechargeable unit has been in use for decades.

 

" You don't know everything.  Do your research about this technology"

 

Allow me to fill you in. You are correct, I don't know "EVERYTHING", no one does, but I do have a good working knowledge of the subject at hand. In fact I currently hold a few FCC & FAA licenses in Electronics, communication, radio, and avionics.

 

 This means that I am Licensed and qualified to service/rebuild/replace any of the avionics/electronics systems in anything flying today. from the lowly Cessna, up to the latest Boeing 777 or 787, or Airbus A380 etc..

 

I am also licensed and qualified to service/rebuild/replace/and operate everything from the Radio Shack walki-talki, up to and including amateur and  commercial radio/electronics equipment, as well as any radio/TV/micro-wave facility/transmitter in the U.S..

 

So yes, I have a few credentials.

 

You stated: "Activa RC neurostimulator contains an electronic circuit-board and is powered by a rechargeable battery".

Ok to begin with, I have seen thousands of electronic circuit boards fail is hundreds of different ways. All Medtronic implantable units have electronic circuit boards. What makes the "RC" different is that it has a rechargeable battery, with a separate recharger unit. By replacing the standard battery with a rechargeable battery/recharger, you have added another level of electronics that can fail. 

 

Ok back to your Activa RC system.

First off, you have to recharge the battery in your recharger unit, and that is done just like most battery operated electronic devices, from a wall socket. The electrical current/voltage from the wall socket passes through a rectifier bridge, changing the voltage/current from A/C to DC. Then it passes through a voltage/current regulator to limit the voltage and current to preset levels. The recharger is circuit protected with either a clamper or a SCR crowbar circuit (would you like me to draw you the schematic?), both of which have been known to fail, not often, but they do. The recharger unit's batteries are subject just like all batteries (sorry, I can't change the laws of physics) to over-charging/over-voltage and/or memory effect. (again, I'm using very basic language here)

 

Once the batteries in the charger unit are charged, you can then use them to power the built-in transducer/induction loop.  What happens here, is when the unit is activated, voltage is passed from the battery positive to the battery negative through a wire coil. The current through the coil creates an electromagnetic field.

 

The implantable part of the Activa RC is basically the same as the standard unit with the exception of replacing the standard battery, with a rechargeable one, adding a transducer/inductance loop, and a charging circuit.

 

How the charging unit charges the battery in the implanted unit is via an electromagnetic field. Basically when you hold the activated charger's transducer/inductance loop over the matching loop of the implanted device, the electromagnetic field created by the charger unit, induces a matching electromagnetic field in the implanted device. The internal device then changes the electromagnetic field back to voltage and current to charge the battery. The voltage and current again passes through a regulator with a battery voltage level sensor, and a circuit protector (either a SCR Crowbar or Clamper circuit) before charging the internal battery. Again, like any battery , is subject to overcharging (if the voltage level sensor fails) and memory effect. Memory effect can happen regardless.

 

This is all before the voltage get to the actual DBS controller.

 

As you can see, there are many many various different circuits the electrical current/voltage must pass through before it ever gets to the actual DBS controller. Each of these circuits can fail, due to anything from a cold solder joint, to a bad diode, transistor, thyristor, resistor, capacitor, inductance loop, etc. etc. etc.......... Way too many variables for me.

 

Whereas the traditional DBS controller has the charged battery preinstalled before implantation. Once implanted, it's done (zero maintenance). Yes it needs to be replaced (per Medtronic) about every 4-6 years, but the rechargeable controller needs to be replaced (per Medtronic) at 9 years. Thus with the rechargeable, you only get approx. 50% more life before replacement.

 

The question here is, do I go with the device that's only been available for 5 years? or the device that's been tried and proven for decades? 

 

Personally, I'll take the tried and proven battery technology.

 

The above technical information comes from both my own knowledge of electronics, as well as information I received from one of the design engineers at Medtronic, that holds comparable FCC Licenses as my own.

 

Sorry if this is long folks, but it's been awhile since I've written a technical manual....... lol

The last one was for the Auto-Pilot system on the Boeing B767-300.

 

So David,

Next time you tell someone that they "don't" know what they are talking about? You might want to think twice.

Edited by graflexmaster
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As for me, I'm still on battery power and having my usual conundrum... 

 

August 7th, turned (L brain, R body) up by one increment to deal with an emerging tremor.

 

August 18th, couldn't take the toe twisting it caused any longer, dialed back meds by 1 pill (100mg Sinemet) from 4 pills to 3.  Saw an improvement as the day wore on. 

 

August 19th, took only 1 pill, because the relief was so much better.  

 

Today:  Awoke with severe hip pain and now have a tremor in my right leg again.  It would seem to make sense, then, that I should turn the DBS up, right?  But, going on six years of experience, tells me that this will cause further twisting of my toes.  So, I took a morning Sinemet CR... now, I shall wait and see if I need more meds throughout the day.  

My point?  It's often a fine, fine balance and a personal juggling act that I usually face alone.  I often do not know what to do for the best and there is no one--outside of calling my doctor or Medtronics--who can give me helpful advice, because my social circle is strangely devoid of people with this kind of crap implanted in their brain or body.  Now, I'm in tears again because I feel I set of a s**t storm of debate over batteries.

 

People ask about the down side of DBS, well THIS IS IT.   Feeling like I have to figure things out alone all the time and fearing, if I say or opine too much, I will upset somebody, worry somebody, or else be seen as a whiner.  I am not an engineer, but I have a deep and abiding respect for engineers because, for one thing, my husband is one.  He is an engineer who carries a lot of weight on his shoulders and I will  not add to that weight with my petty PD ups and downs.  But, what am I supposed to do when my toes are twisting, or I'm tremoring to an annoying degree and there is no one to give me a truly informed opinion?  

 

I'll tell you what I do:  I suck it up and try a little adjustment at a time until I get somewhere I can live with. 

 

I'm going to make tea.  

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Kim,

I am sorry if I set off any kind of storm for you. Very sorry, as it wasn't my intent.

 

Yes, I hate it when someone that doesn't know me, tells me I don't know what I'm talking about, and I am afraid I went all tech nerd on here..... in your quiet corner....... Hand me a rag, and I'll clean my little mess up on the floor.

 

I'm here to learn from YOUR experiences..... not spout off my petty issues........

 

please forgive me?

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Michael,

 

Never said I had a DBS (see quote), so don't like your insinuation.  I have an SCS which is the same technology but implanted in my lower back.  Your initial comments came off as condescending.  I was only offering my personal experience with a similar type technology.

 

Quote from above post 61:

Just a small note on the charging of the battery.  DBS uses the same type of battery technology that is found in my SCS.

 

SCS has been around for over 40 years.  The rechargeable systems received FDA approval in 2006.  Considering that it takes years for the FDA to grant approval for a medical device, it's rather easy to conclude this is not something new and "cool".  There have been studies comparing a rechargeable vs a non-rechargeable system.

 

Rechargeable spinal cord stimulation versus non-rechargeable system for patients with failed back surgery syndrome: a cost-consequences analysis.

RESULTS:

A rechargeable SCS system is projected to require from 2.6 to 4.2 fewer battery generator replacements for battery depletion than a non-rechargeable SCS system. The total lifetime savings of a rechargeable system range from $104,000 to $168,833. In all of the one-way sensitivity analyses conducted, a rechargeable system saves money. Among all of the assumptions underlying the analysis, the annual cost after device removal contributes the most uncertainty.

CONCLUSIONS:

A rechargeable SCS system is projected to save up to $100,000 over a patient's lifetime. Fewer pulse generator replacements will also decrease patient discomfort and morbidity from procedural complications.

 

 

Another thing to consider is less surgeries required to maintain the DBS system.  There has been many threads mentioning the dangers of surgery on Parkinson's Patients.  One would think that surgery on an advanced Parkinson's Patient would increase their risk for complications.

 

Someone got the bright idea to use the SCS technology in the brain to treat Parkinson's. 

 

Kim, I apologize for hijacking your thread.  I will say no more on this subject.

 

Dave

Edited by Daven

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<sip sip sip>  Tea.  Makes so many things better.  

 

Michael, I absolutely refuse to forgive you when you have nothing to be forgiven for.  I actually found your posts interesting (well, the bits I could understand, that is), I just worried that I had caused disharmony in the one place I can come for a truly understanding ear - and, often, well informed advice.  

 

I have been loathe to share this side of DBS, because, for one thing I feared it was a struggle I alone had and, for another, I was terribly afraid that it would put someone off of a surgery that might help them a great deal.  The fact is, it is a lot of trial and error for me but... when I get it right and, (even if it takes a few weeks), I usually do, I can go months without thinking about it at all.  I have learned to be extremely conservative in my approach to making adjustments to my DBS or my meds, because I know from experience that too soon, too much, or too often can be disastrous in terms of stabilizing again.   

 

For what it's worth, I elected to have the old kind of battery for pretty much the same reasons you iterated... and, if I get 7 years out of this battery as my Medtronics guru is predicting, then I weigh recharging time, energy (emotional and mental - keeping track - not the kind that comes through an outlet), the size of the battery and if recovery from a second battery implant will be much easier on me than the first (I'm thinking, scar tissue is already set and the battery will be less likely to do the "wandering" thing it is apt to do when first implanted??)... and those are just my initial thoughts without all the in-depth medical consults I will most certainly go through when the time comes.  

 

I keep saying this:  We are all different.  We all have different needs and values, so what works for one, may not for another.  I'm happy Daven that your battery works for you.  I will fully support your choice, Michael, when and if the time comes, for whatever kind of battery you choose.

 

Tea anyone?

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Thanks Kim,

I will take a glass of chocolate milk.

Coach.

p.s. they sent home the controller, so now we have to wait until next month to turn it on.

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Coach!  So glad she is home and her recovery has begun.  I couldn't wait for my DBS switch-on day.  When it came, my husband actually joked with my MDS that he wanted "what she's having," because they tested the perimeters and, at one extreme, I felt (and sounded) tipsy!  Then, they adjusted it to just below that point, so--no--I can't give myself a buzz at will!  Oh well.

 

You deserve a glass of chocolate milk, you've been through a lot.  Keep me posted on your DW's progress,

Kim

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Please quit making such a fuss children,  or we will have to put you in the corner for a time out !  I would rather know as much as I can good and bad to make a better informed decision. Face it regardless of how well educated you are are not, we all face a common challenge. PD doesn't pick and choose it's an equal opportunity afliction, but at the same time it's like you have said it's a very personalized struggle.

 

 I wish the battery choices were as simple as Everyready or Rayovac but it isn't. For me it would be which choice are you at peace with after all. The only thing I can say is the tech has come a long way in just a few short years. My mother has had a pace maker now for several years now, at first she had to travel to the heart specialist for adjustments and every thing. A year ago she had a lead that went bad when they replaced it they just basicly rewired and replaced everything, sent her home the same day. Now they can contact a box that's connected to the phone line, get her read out, make adjustments and the whole thing any time of day and all this without her even knowing about it untile they call her back . The  purpose of this ramble is Medtronics makes her pacemaker. So see how things are progressing ! Speaking of progress the dogs want to go out so I'd better be moving to the door Peace all   

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