Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

4-Year DBS Follow-up


  • Please log in to reply
159 replies to this topic

#141 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted 30 September 2014 - 07:41 AM

The symptoms showed up after the stimulator was turned on. I agree she is taking too high of a dose, but in her mind she wasn't
and upped them a bit. I will communicate with the neurologist before the appointment since I can't say anything in front of the neurologist without her disagreeing. Otherwise there is nothing new to report. Next week is the recheck and changing stimulator
settings. I didn't think anything about not replying, don't sweat it.

Coach T

#142 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 511 posts
  • LocationGeorgia

Posted 30 September 2014 - 08:13 AM

I agree, you need to talk to her doc at the next adjustment.  When I think about it, at my switch on appointment they were testing perimeters, I guess, and they turned my DBS to a setting that had me sounding rip roaring drunk!  I felt it and said, in what I thought was slightly slow speech, "I fheel a llliiiiitttllle drrrrrunk!"  (My husband immediately said, "I'll have what she's having!")  They reassured me that it would not last, they were just testing to see how much was too much and, sure enough, they adjusted me back to my sober self again.  

After the appointment, I mentioned to my husband that, at one point, I almost felt intoxicated and he said, "You think?!  You sounded drunker 'n' Cooter Brown! (my husband is a good ol' Southern Boy!), you were talking slowly and deliberately, because of your wildly slurring speech, your eyes had the look of a happy drunk, and you were swaying where you sat!  I seriously considered asking the doc if he'd set it so I could just buzz you up every now and then!!"  WELL!!   

 

My point is, from my perspective, all I felt was a little "buzzed," but my husband said I appeared to go from normal, to slam intoxicated, back to normal again.  So, your wife may not know that DBS is impacting her or, if she does, to what extent.  Your objective opinion may well help them with the settings they give her next visit.

 

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#143 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted 30 September 2014 - 01:18 PM

Kim,

The punding is really getting to me, paper everywhere. The bed is covered, the table is covered. a third of the living room, the
computer desk. She is impulsive and does things without telling me she has done them (things I usually do). She is clueless about finances, etc, etc. There is much more, but I don't want to go on, plus a lot of it is too intimate. The cognitive aspects drive
me crazy.

Coach T

#144 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 511 posts
  • LocationGeorgia

Posted 01 October 2014 - 07:42 AM

Coacht,

She may be overmedicated now because the DBS is doing a lot of the work her meds used to do... you must talk to her doc!  Tell them how she has been and they will be able to make adjustments accordingly - either to her meds, or DBS.  When I go for my follow-ups, they give my husband a questionnaire to fill out and one of the questions is something like, "have you noticed any unusual or compulsive behaviors in the patient?" (My husband ticked me off by writing, "Yes, she shops too much!" one time, but then he explained to the doc, "Well, it's always seemed compulsive to me--after all, how many shoes can one person need?--but, I have to say it is not unusual per se, in fact, I'd say it's business as usual!"  He heard from me all the way home on that one!)  This leads me to believe that unusual or compulsive behaviors are a risk and should be reported if and when they occur.  Call your doc if you must, but get your wife help!

Kim


Edited by KimAgain, 01 October 2014 - 03:06 PM.

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#145 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted 01 October 2014 - 03:29 PM

Kim,
We are going next week for adjustments to the stimulator levels. I did notice her left foot shuffling or dragging last night so I think they will definitely turn up the levels. Then we will have to go through a med adjustment process again and what she thinks
she feels like and how she acts will be different than my impressions. I noticed her smile is gone already on some pictures.
Coach T

#146 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,696 posts
  • LocationWashington, DC

Posted 01 October 2014 - 03:42 PM

My 'adjuster guy' talks of merely cranking up the amps on a single lead.  With two wires each bearing four electrodes and each electrode susceptible to many (infinite?) modulations I'm starting to look around for greater sophistication and a data base focusing on optimizing results.  Like the ad says, 'after the sale it's the service' and I'm beginning to question the level I'm receiving.  Good luck Coach!


Edited by Rogerstar1, 01 October 2014 - 03:55 PM.


#147 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 511 posts
  • LocationGeorgia

Posted 01 October 2014 - 08:16 PM

Welcome to the DBS world I have been navigating for over five years now...  After the surgery, the adjustments are critical and I'm sorry to say this, but you may have to fight for a good one.  It's worth it though.  Also, adjustments in my experience, often take several days (to even a week or more) to see the benefits (or drawbacks) of.  I have found that it is critical to take your time--to wait a while to give an adjustment chance to do what it's going to do before you start adjusting up or down on your own.  Also, if an adjustment is clearly causing a new and intolerable issue, you need an "open door" policy with your doc to work it out.  Above all, do not let yourself feel like a failure or a let down to your doctor if you are not responding as quickly or in a way they think you should.  

 

Hang tough guys,

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#148 New normal

New normal

    Advanced Member

  • Members
  • PipPipPip
  • 624 posts
  • LocationArizona

Posted 03 October 2014 - 07:43 AM

Well, guys, the twists and turns of PD.

I am scheduled for another DaT scan on October 28 to help determine if I am a candidate for DBS. I still am skeptical of the procedure.

However, my husband and daughter now have medical problems that need more attn than mine, so I will put DBS on hold for a bit.

I appreciate this thread. It has been very helpful.

Good luck to you all....stay strong.
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#149 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted 08 October 2014 - 01:45 PM

Went for the follow up visit. the voltage and bandwidth were increased. Amantadine is to be discontinued. Sinemet only taken as needed. She was overmedicating and that was causing the confusion. It was amazing to see the differences small changes made in her.
She didn't even notice or feel most of the changes. Looking forward to improvements. :)

#150 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 511 posts
  • LocationGeorgia

Posted 09 October 2014 - 05:21 PM

I'm so glad to hear this, coacht.  It often takes a lot of tinkering to get the right "mix" but, in time, you'll get there.  Then, all being well you'll sit tight for some time until slowly, oh so slowly, you notice something changing... and the tinkering begins again.  It is all worth it though, once you find the sweet spot!


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#151 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted 10 October 2014 - 02:28 AM

Finding the sweet spot, is not a process I look forward to, although as like you mentioned, the results, make the journey worthwhile........


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#152 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted 10 October 2014 - 02:38 AM

Almost forgot.......... I have an appointment with a MDS up at the University of Washington Hosp. for a second opinion to make sure I'm a good candidate for DBS (my Dr. said it's just a formality). They called and told me that the appointment. is Dec. 16th. I asked if there was an appointment any earlier, and the receptionist giggled. She said the only reason my appointment was that soon, was because my MDS did the request directly (MDS to MDS), and that they were booking everyone else out in late March/early April........... I was like WOW!! I'll take Dec. 16th and be HAPPY! thankyouverymuch................. I'd love it to be able to get through the process and have all my ducks in a row (not taped), and surgery scheduled by late winter............... of course, I'm not holding my breath.........lol


Edited by graflexmaster, 10 October 2014 - 02:39 AM.

Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#153 KimAgain

KimAgain

    Advanced Member

  • Members
  • PipPipPip
  • 511 posts
  • LocationGeorgia

Posted 10 October 2014 - 09:34 AM

I once needed the ability to make a half increment adjustment and, at that time, there was no one local who could adjust me, so my MDS gave the Medtronics rep, who was  in my area (and had been present during my surgery) permission to make the programming change for him.  We met up at a Starbucks and he made the adjustment--what a trooper!  It was perfect!  Previously, when I turned up one increment, it was just too much, but I needed to adjust because staying where I was was just not enough!  The half increment change was just the ticket, it allowed me to make a tiny adjustment that stopped a tremor without causing dystonia and kept me from needing more meds.  I believe I'm back at the same place again, as a matter of fact.  I'm debating whether to call my neurologist to see if he can change my programming to allow a smaller tweak than I've been making because I have to wait until the symptoms are really very troublesome before adjusting, because a full increment adjustment too early seems to throw me into dystonia again.  My next scheduled appointment is in December because my doc was so booked up, but I think I may need to request a walk-in visit.

 

One piece of advice I would give:  Be diligent about writing things down!  Keep a calendar of symptom changes, meds changes, and DBS adjustments.  Then, take it with you to your appointment.  My doctor is a seriously smart guy who is very easily distracted, so I learned early on to present the information on paper, so that if he's not paying close attention to what I am saying to log it into short term memory (much less long!), he can look down and see what I just told him on a graph or something right in front of him.  Every change I made since my last visit is chronicled in front of him, so that he can keep referring back to it without distraction.  

 

graf,

A second opinion?  I had to have 27 specialists look at my case all at once!  They watched a video of my functioning on and off meds and had the neurologists, neurosurgeons, neuropsychologist, and the physical therapist who had examined me, all present for the final decision--a unanimous vote, or the answer was no.  Then I had to wait for the "verdict" to come down--and, it felt like I was on trial for my life, I can tell you!  I wish you well with your second opinion... once the "hurry up and wait" period is over, things seem, sometimes, to go very quickly. :)

 

Hang strong everyone!

Kim


Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#154 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted 10 October 2014 - 03:59 PM

KimAgain posted.....

...................once the "hurry up and wait" period is over, things seem, sometimes, to go very quickly. :)

 

I Shure hope so, as the waiting is beginning to get to me.............


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#155 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted 12 October 2014 - 07:52 AM

Michael,
I would say my wife has gained 7-8 years physically over where she was before the surgery. That is she is the same now with DBS and a few meds as she was 7-8 years ago with meds only. they also said she had the optimum outcome, so don't get your hopes up too
much. Cogniitively there has not been much improvement, even dropping almost all meds. I was hoping for more there.
Coach T

Edited by coacht, 14 October 2014 - 08:16 AM.


#156 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted 13 October 2014 - 03:36 PM

Thanks Coach, but to gain 7-8 years physically? I'll take it..... because 7-8 years ago, I only had tremor on one side, and that was intermittent, unlike today with tremor most all the time on both sides......... and I had a whole lot less of the "old man" shuffle......... My cognitive is good now, so not too worried there...........


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#157 New normal

New normal

    Advanced Member

  • Members
  • PipPipPip
  • 624 posts
  • LocationArizona

Posted 13 October 2014 - 10:25 PM

This discussion gets more interesting to me every day. As I hv sd in other posts, my neuro talked with me abt DBS and has scheduled me for a DaT scan for Oct 28 to compare to one I had last year.

Last year my scan was normal...but I had considerable symptoms.

Hearing the other experiences, I shd be grateful for the expediency and take advantage of it...so I guess I will be in Phoenix on Oct 28...and we will see where it leads me.

Thank you Coach T, Kimagain...and others for sharing...kinda takes the mystery away...and makes it real....
Dx'd 6/13 @ 66. Symptoms 10 years prior.
carbidopa/l dopa 50/200 5x daily
Normal DaT scan, normal MRI. Dx'd w/l dopa challenge by MDS
Symptoms: break thru tremors rt side, rt leg drag when fatigued, balance, cognitive/ speech issues, apathy

#158 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted 14 October 2014 - 01:05 PM

Although I'm nervous about the whole DBS process, the clarity I've found here, has taken a lot of the fear away.


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#159 coacht

coacht

    Advanced Member

  • Members
  • PipPipPip
  • 352 posts

Posted Yesterday, 10:51 AM

She said she wasn't feeling good so she went back Friday and the nurse turned it up a bit. She doesn't look any different to me.
We will see how it goes now.

#160 AB-Normal

AB-Normal

    Advanced Member

  • Members
  • PipPipPip
  • 867 posts
  • LocationTacoma Wa.

Posted Yesterday, 04:58 PM

Well I'm cheering for a great outcome........


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users