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WindsongMoonChild

DBS Update - 8 years

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Odd, isn't it, how time has a way of slipping by, like a rambling river, winnowing this way and that, barely noticed at all, until, one day... Our skin is wrinkled, our shoes are soaked through--and, we have little or no idea how we came to be up to our shins in unfinished business?  Then, of course, there is the passage of time and tides as we Parkies know them...  A day takes a week; seems like a month; could have been a year; perhaps, was merely a minute--but it hardly matters, since we ourselves do not even know.  And, so it has gone with me.  Time.  Washing past my senses like the Falls of Niagara, until now, I stand here, dripping apologies for my continued silence and hoping, in some small way, I shall be remembered.

 

This time last year I was preparing for a visit from my Mother.  I shall post after her visit, I told myself.  She was here for a month and, after that, well... the water of time continued rising, unabated, until here I am, preparing for a visit from my sister, her husband, and two grandchildren in January.   

 

The whole time I was preparing for Mother's visit I kept thinking, battery, just keep going until after her visit, that's all I ask!  My wish was granted.  Then, after twenty years with the same company, my husband changed jobs.  My internal dialogue changed, too.  Just keep going, dearest battery, until... well, until we are sure about the job!  Once again, I got my wish.

 

Then, in early October this year, when I was just about to start entreating my beloved battery to give me until January, I checked my levels one day and, there it was: The "Magic Number" I had been told to watch for.  Within two weeks: ERI.  Elective Replacement Indicator.  

 

I texted a picture of my settings to Ken at Medtronic.  Ken set the ball rolling and, on October 27th, I was admitted to Vanderbilt for surgery.  It was a surprisingly simple procedure (although certainly not cheap--eight years earlier, the DBS surgery, complete, was about $150K--replacing the neurostimulator (battery) was right at $77K) with surgery taking just fifteen minutes and, recovery, two hours.

 

This time, I healed very quickly (as compared to the original battery placement) and, the sutures held for a month without dissolving, so I removed them myself.  The incision is healing nicely and the redness around it beginning to fade.  I saw my Primary Care doctor for a follow-up last month and she tells me I am healing fabulously. The same day, I had a follow-up with my Neurologist and, he seemed to think I "looked great," too.

 

A few days ago, I was talking with my Medtronic hero, Ken, and he mentioned something very interesting and it was information that had, somehow, escaped me.  Let me see if I can regurgitate the gist of it...

 

There are two specific types of DBS settings.  1. Constant Voltage Mode.  And, 2. Constant Current Mode.  My DBS is set on Mode 2, Constant Current.  This, I knew.  What I didn't know is that I am a rare case--well, at Vanderbilt Hospital, anyway.  Ken told me that, as a wild, wild guess, he'd estimate that about 95% of the Vanderbilt DBS patients were on Constant Voltage Mode.  That put little ol' me in the remaining 5% group.  

 

Hmm... 

 

Evidently, I have been responding to DBS just a little differently to most patients since the very beginning.  For one thing, I had no "honeymoon period" at all.  Then, for another, I was plagued with rampant dystonia for quite some time.  Eventually, I switched--to one Neurologist.  The biggest problem I had at the time was, too many cooks in the kitchen and each one was clearly loathe to step on the other's professional toes, which, of course, left me under treated and frustrated as all get out (to use the Southern vernacular).  Dr. K. suggested I would do a lot better, in his opinion, if I were switched to Constant Current.  So, he set up a "B" setting (so I could switch back if in trouble) and, away I went.

 

Now, this change took some time to tinker with; making small slow, slow, slow changes to meds and adjustments to my DBS but, eventually, I was weaned off Sinemet altogether and when I had my battery replacement surgery in October, they removed the old setting completely and gave the new setting the "A" assignment.  

 

Now, why is the Constant Voltage Mode/Constant Current Mode thing of any significance?  Well, I think it's because  my response to DBS is quite different to the vast majority of DBS patients--because, if it wasn't, I'd be on Constant Voltage Mode, too, just like the other 95%.  This is neither a good thing or a bad thing.  It just, "is."  And, because it is, one should be very careful in comparing other patients results with mine.  After all, if my settings were the "best" option generally, we'd all be on it.

 

So, symptom-wise, where am I now?

 

  • The dystonia is definitely down to significantly less than a dull roar.
  • My speech can tend to be a little slurred occasionally, but it's mostly when I'm tired, or unwell.
  • Fatigue has been a continuous struggle for me.  I was prescribed ProVigil which made a HUGE difference, but I'm in a pitch battle with the new insurance company because they are refusing to pay for it (it costs $600 for a thirty-day supply).
  • I know I should get in 10,000 steps a day, but I average about 6,000.
  • The Blue Hole of depression returned, back in August, so Dr. K increased my Cymbalta to 60mg.  I am doing much, much better now.
  • My balance is getting progressively worse.  I have had one fall this year.  DBS does not correct balance issues, so I guess I'm in a holding pattern--just waiting to see when I become unsafe.

Well, that's all I can think of right now and, I guess I should be getting some sleep!

Goodnight my fellow travelers on the Parkinson's Pathway... May your tremors be few and, triggered only by lust!!!

 

Kim

Oh, P.S. Just a general FYI, for anyone new to the battery replacement thing... If you decide to schedule surgery too soon, your insurance company may just decide not to pay for it.  The ERI symbol, I was informed, pretty much needed to be on the screen before the surgery--which would seem to make no sense because it means "Elective" Replacement Indicator, after all.  But, when my battery hit The Magic Number Ken had told me to let him know.  I did and, it took about a month to set the surgery up and, by then, the ERI was there.  I was a little nervous for a while because I don't take any Sinemet and a switch off would mean BIG trouble for me!  Anyway, something to consider when you time comes for a new battery. :)

Edited by KimAgain
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TexasTom    706

Thank You!  I appreciate everything you have written, as I have much to learn.

 

Our Medtronics rep left for another company, but was widely admired. The new rep has some very large shoes to fill,

but seems to only show up for surgeries and not otherwise available. Thankfully we have a DBS Support meeting in town

once a month so we can exchange thoughts/questions/concerns with fellow parkies.

 

I did learn post brain surgery -- no exercise for six to eight weeks.  I returned a little too soon (ahem) and could have had

major complications. For me the exercise is doing great on pushing depression away as long as I work out, one reason I

pushed getting back to the gym.

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Thank You!  I appreciate everything you have written, as I have much to learn.

 

 

I had absolutely no one to turn to for advice in the early days except my Medtronics rep and, if I've learned anything, it is that we are all so  different that others can help, but by far the best teacher is our own quiet mind.  Over time, you will gain experience with your DBS and, the trick is, learning to listen to yourself--before you listen to other voices.  Spouses, friends, family all mean well, but even your doctor doesn't know what it's like to have this thing in your brain and controlling the movements of your body, so learn fairly early to trust yourself.  Good Luck!

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MurrayPD2    219

Thanks.  My surgery is 3 weeks away so this helps to see a good outcome for years (not without persistence). It is like standing in the big roller coaster line... big anticipation.

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Thanks.  My surgery is 3 weeks away so this helps to see a good outcome for years (not without persistence). It is like standing in the big roller coaster line... big anticipation.

 

It is.  But, I guess the only option we have is to place our trust in our surgeons and then, jump in feet first!  Good Luck, and have a great Holiday Season!

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Oakman    39
  • My balance is getting progressively worse.  I have had one fall this year.  DBS does not correct balance issues, so I guess I'm in a holding pattern--just waiting to see when I become unsafe.

 

Kim, I must say that my balance has definitely improved since DBS five months ago. I too understood DBS would not correct balance issues. But I stand daily on each foot, with the other extended forward, just to see if I'm still able - something I could not due prior to DBS.

 

And ditto on my Medtronic rep. I asked him to turn my generator on when installed, which he did. His initial setting was almost identical to my current setting after five months of programming.

 

Always enjoy your updates.  Merry Holidays.

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siak    43

KimAgain, I am so happy to see you back on the forum. I was wondering if you were ok. You have always had such good observations and writings about the DBS. I had put a plea out to people who had the surgery more that 5 years ago to tell me their experience. I got only a few people who answered me and I was very worried that possibly the ones who had  the surgery more than 5 years were not doing well.  My experience has been less than satisfying. The fatigue, depression, change in personality were the things that bothered me the most. The surgery had allowed me to walk normally for almost 2 years, but now I am freezing again and falling a lot    because I cant pick my feet up off the floor and the top of my body goes ahead of my legs. I have never had a Medtronic rep. In fact, I thought that the rep was supposed to talk to me after surgery but there wasnt anyone there. Thanks again for taking the time to write about your experience.

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waruna01    44

Odd, isn't it, how time has a way of slipping by, like a rambling river, winnowing this way and that, barely noticed at all, until, one day... Our skin is wrinkled, our shoes are soaked through--and, we have little or no idea how we came to be up to our shins in unfinished business?  Then, of course, there is the passage of time and tides as we Parkies know them...  A day takes a week; seems like a month; could have been a year; perhaps, was merely a minute--but it hardly matters, since we ourselves do not even know.  And, so it has gone with me.  Time.  Washing past my senses like the Falls of Niagara, until now, I stand here, dripping apologies for my continued silence and hoping, in some small way, I shall be remembered.

 

This time last year I was preparing for a visit from my Mother.  I shall post after her visit, I told myself.  She was here for a month and, after that, well... the water of time continued rising, unabated, until here I am, preparing for a visit from my sister, her husband, and two grandchildren in January.   

 

The whole time I was preparing for Mother's visit I kept thinking, battery, just keep going until after her visit, that's all I ask!  My wish was granted.  Then, after twenty years with the same company, my husband changed jobs.  My internal dialogue changed, too.  Just keep going, dearest battery, until... well, until we are sure about the job!  Once again, I got my wish.

 

Then, in early October this year, when I was just about to start entreating my beloved battery to give me until January, I checked my levels one day and, there it was: The "Magic Number" I had been told to watch for.  Within two weeks: ERI.  Elective Replacement Indicator.  

 

I texted a picture of my settings to Ken at Medtronic.  Ken set the ball rolling and, on October 27th, I was admitted to Vanderbilt for surgery.  It was a surprisingly simple procedure (although certainly not cheap--eight years earlier, the DBS surgery, complete, was about $150K--replacing the neurostimulator (battery) was right at $77K) with surgery taking just fifteen minutes and, recovery, two hours.

 

This time, I healed very quickly (as compared to the original battery placement) and, the sutures held for a month without dissolving, so I removed them myself.  The incision is healing nicely and the redness around it beginning to fade.  I saw my Primary Care doctor for a follow-up last month and she tells me I am healing fabulously. The same day, I had a follow-up with my Neurologist and, he seemed to think I "looked great," too.

 

A few days ago, I was talking with my Medtronic hero, Ken, and he mentioned something very interesting and it was information that had, somehow, escaped me.  Let me see if I can regurgitate the gist of it...

 

There are two specific types of DBS settings.  1. Constant Voltage Mode.  And, 2. Constant Current Mode.  My DBS is set on Mode 2, Constant Current.  This, I knew.  What I didn't know is that I am a rare case--well, at Vanderbilt Hospital, anyway.  Ken told me that, as a wild, wild guess, he'd estimate that about 95% of the Vanderbilt DBS patients were on Constant Voltage Mode.  That put little ol' me in the remaining 5% group.  

 

Hmm... 

 

Evidently, I have been responding to DBS just a little differently to most patients since the very beginning.  For one thing, I had no "honeymoon period" at all.  Then, for another, I was plagued with rampant dystonia for quite some time.  Eventually, I switched--to one Neurologist.  The biggest problem I had at the time was, too many cooks in the kitchen and each one was clearly loathe to step on the other's professional toes, which, of course, left me under treated and frustrated as all get out (to use the Southern vernacular).  Dr. K. suggested I would do a lot better, in his opinion, if I were switched to Constant Current.  So, he set up a "B" setting (so I could switch back if in trouble) and, away I went.

 

Now, this change took some time to tinker with; making small slow, slow, slow changes to meds and adjustments to my DBS but, eventually, I was weaned off Sinemet altogether and when I had my battery replacement surgery in October, they removed the old setting completely and gave the new setting the "A" assignment.  

 

Now, why is the Constant Voltage Mode/Constant Current Mode thing of any significance?  Well, I think it's because  my response to DBS is quite different to the vast majority of DBS patients--because, if it wasn't, I'd be on Constant Voltage Mode, too, just like the other 95%.  This is neither a good thing or a bad thing.  It just, "is."  And, because it is, one should be very careful in comparing other patients results with mine.  After all, if my settings were the "best" option generally, we'd all be on it.

 

So, symptom-wise, where am I now?

 

 

  • The dystonia is definitely down to significantly less than a dull roar.
  • My speech can tend to be a little slurred occasionally, but it's mostly when I'm tired, or unwell.
  • Fatigue has been a continuous struggle for me.  I was prescribed ProVigil which made a HUGE difference, but I'm in a pitch battle with the new insurance company because they are refusing to pay for it (it costs $600 for a thirty-day supply).
  • I know I should get in 10,000 steps a day, but I average about 6,000.
  • The Blue Hole of depression returned, back in August, so Dr. K increased my Cymbalta to 60mg.  I am doing much, much better now.
  • My balance is getting progressively worse.  I have had one fall this year.  DBS does not correct balance issues, so I guess I'm in a holding pattern--just waiting to see when I become unsafe.
Well, that's all I can think of right now and, I guess I should be getting some sleep!

Goodnight my fellow travelers on the Parkinson's Pathway... May your tremors be few and, triggered only by lust!!!

 

Kim

Oh, P.S. Just a general FYI, for anyone new to the battery replacement thing... If you decide to schedule surgery too soon, your insurance company may just decide not to pay for it.  The ERI symbol, I was informed, pretty much needed to be on the screen before the surgery--which would seem to make no sense because it means "Elective" Replacement Indicator, after all.  But, when my battery hit The Magic Number Ken had told me to let him know.  I did and, it took about a month to set the surgery up and, by then, the ERI was there.  I was a little nervous for a while because I don't take any Sinemet and a switch off would mean BIG trouble for me!  Anyway, something to consider when you time comes for a new battery. :)

Kim, what was the magic number before ERI came on?

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Kim, Very interesting.

 

I don't know if I am constant current or voltage. I am only 3 months into post DBS surgery and the programmer  is still trying to find what works best. Had a group A and on my second group B right now. Apparently with bipolar settings you can pinpoint certain areas.

The programmer said she can make me do anything she wants, so I asked her if she could make me cluck like a chicken? No word on that yet, but she seems to think she can make my balance worse or better.

 

We will see

 

Thanks

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noah    66

I dont know what mode I am either. Would one mode be associated with more complications than another. I had DBS 12/15 and lately my speech has been terrible and gets worse every time I up the voltage. 

Anyone know the difference between the medtronic vs the st jude version??

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waruna01    44

Speech usually gets worse with DBS and you need an expert programmer like Sierra Farris if it continues to be a problem. If your frequncy and pulse width is over 130 hertz and 60, it might be partly to blame. Bi polar settings, frequncy less than 130 hertz Lower pulse width at 60 might be helpful. If your speech is improved when the DBS is switched off, it's stimulation that is causing it

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noah    66

Has anyone that has already had the surgery seen this serria ferris in colorado?

If so who manages your PD meds if you live in a different state

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waruna01    44

My dad saw her. She is a very good programmer but you will have to travel to Denver to see her. She works with Dr Giroux who is a very good movement disorder specialist and she manages the PD meds. There are few places that handles troubleshooting clinic for DBS patients in U.S. She is one of them. UF florida has one too.

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