Jump to content
helplinedonate
waruna01

DBS Programming Sessions Per year

Recommended Posts

For those of you had DBS, how often do you normally see your programmer in a given year?

Edited by waruna01

Share this post


Link to post
Share on other sites
11 hours ago, waruna01 said:

For those of you had DBS, how often do you normally see your programmer in a given year?

Normally every six months, more frequently if need be

Mireille

 

 

 

 

 

 

 

  • Like 1

Share this post


Link to post
Share on other sites

 

On 6/30/2018 at 9:19 PM, MIMILASTER said:

Normally every six months, more frequently if need be

Mireille

Ditto.

 

  • Like 1

Share this post


Link to post
Share on other sites

MDS who does my programming.   Four times a year.

Edited by TexasTom

Share this post


Link to post
Share on other sites

Every 6 months or as needed.  5 times total since surgery.  Only 2 different settings needed since surgery.  One programming I just couldn't turn it down low enough to stop SID's (stimulation induced dyskinesias).  So only took about 5 minutes to reduce my lower limit on my amps.  Last appointment no changes needed.  

My next appointment will be my 1 year follow up where they videotape again on/off meds. Standard practice.  Since I am off all meds, will just turn the DBS off. 

 

 

Edited by Kaydee

Share this post


Link to post
Share on other sites

Kaydee, I never have used that term before, sids, to describe that feeling,  My first trip to Toronto for programming had me going home with too high of a lower limit. Thankfully I had the remote control to turn it right off.  Stimulation induced dyskinesia....  I know that feeling.  I sometimes think that there are not enough words in our vocabulary ( Mireille probably can break into French or Italian or some other language to describe what that machine is doing to her )   to describe everything that happens in this renovated, perked up., re energized body that I live in.. I think that is a bit of a problem, for me and the Doctor who listens to my explanation of the dbs machine running all nite long and creating  this great pile of fake dopamine straining my brain  capacity and it keeps me awake and it feels like slowly I am getting electrified. Or with the pent up energy I could fly out the bedroom wndow and around the world. I showed the programmer my notes and he thought that I could of been under stimulated and perhaps I should of taken more levadopa.  No!.  I don't blame the confusion on the programming doctor. I think that we need a standardized reporting form that you fill in your pills for the day, how you feel, extenuating circumstances (bloody hot in my house) and the voltage settings throughout the day.  Maybe even have key wordings, like school report cards, where you can enter an phrase like stimulation induced dyskinesias.  Or feels like restless arm syndrome.   There is no need to reinvent that phrase everytime. It has to be hard for the programmer to sort through all of our notes to figure out what to try next.  I know that I can stumble for words to describe how I feel.   Happy to report that mine is running pretty good now.      

   

Share this post


Link to post
Share on other sites
On 8/6/2018 at 8:38 AM, jb49 said:

Kaydee, I never have used that term before, sids, to describe that feeling,  My first trip to Toronto for programming had me going home with too high of a lower limit. Thankfully I had the remote control to turn it right off.  Stimulation induced dyskinesia....  I know that feeling.  I sometimes think that there are not enough words in our vocabulary ( Mireille probably can break into French or Italian or some other language to describe what that machine is doing to her )   to describe everything that happens in this renovated, perked up., re energized body that I live in.. I think that is a bit of a problem, for me and the Doctor who listens to my explanation of the dbs machine running all nite long and creating  this great pile of fake dopamine straining my brain  capacity and it keeps me awake and it feels like slowly I am getting electrified. Or with the pent up energy I could fly out the bedroom wndow and around the world. I showed the programmer my notes and he thought that I could of been under stimulated and perhaps I should of taken more levadopa.  No!.  I don't blame the confusion on the programming doctor. I think that we need a standardized reporting form that you fill in your pills for the day, how you feel, extenuating circumstances (bloody hot in my house) and the voltage settings throughout the day.  Maybe even have key wordings, like school report cards, where you can enter an phrase like stimulation induced dyskinesias.  Or feels like restless arm syndrome.   There is no need to reinvent that phrase everytime. It has to be hard for the programmer to sort through all of our notes to figure out what to try next.  I know that I can stumble for words to describe how I feel.   Happy to report that mine is running pretty good now.      

   

jb49 - I didn't even know you could get dyskinesias from stimulation before my surgery.  My surgeon said it is a good sign they found the right spot.   

 

After my first programming (off meds) 2 weeks after surgery, I took my meds and went home.  Dyskinesias from combination of drugs and stim were making my flappy arm (my non-technical term for my dyskinesias) go out of control.  At the time I followed my programmers advice and slowly lowered the stim.  I had to cut in 1/2 to get the SIDS to stop. From 1.7 to .85.  Then it took me a month to gradually stop sinemet and increase the stim.  Lined out at about 1.2-1.3 mAmps.  Loads of fun going through drug withdrawals too! Can you say sugar/carb cravings? That was not fun but not the first PD drug I had withdrawals from.   

Being able to describe the symptoms vs side effects is very tricky.  Video can help too.  My dominant visible symptom is left arm tremor. My dyskinesias happen in same arm but movement is very different.  Also left foot drag and anxiety.  DBS helps a lot with anxiety for me.  Again, I did not know it could improve anxiety before my surgery.  My second programming I specifically asked for the setting my programmer saved for us to try at a future session.  I felt calmer kinda felt like moving through water. Relacing but like the air around me had more resistance.  So when my anxiety was coming back, figured I would give it a try before drugs.  It worked.  Still I struggle trying to use stim and exercise to find a balance for now. 

For me it is a fine line between tremor/dyskinesias. Amantadine I cannot tolerate so not an option for me.  So I cannot set and leave my DBS at one setting.  Fatigue, exercise, and just my daily cycle affect how much stim I need.  

Learning curve for me.  At least one good thing about being off all meds is I am more aware of how my activities affect my symptoms.  I think it would be really interesting to study those with DBS and PD who are off meds.  

I struggle with proper vocabulary for symptoms as well. Like inner tremors.  I feel them before they are visible.  

Lately I started a new physical activity.  Canoeing in a six person canoe.  Before we start, I turn my stim down from about 1.35 to 1.15.  The day I forgot my SIDS got pretty bad.  Hard to paddle correctly when your arm has a mind of its own. Noticed a new leg tremor about 1/2 way through our 1.5 hour workout.  This is in my leg where I hadn't noticed tremor much beforr- but more of a fatigue tremor - pushed past my comfort zone.  But it doesn't interfere with my ability to paddle.  As soon as we stop I have to switch back to 1.4 or so.  I am hoping as I build up stamina this will reduce. 

Also being self aware during programming.  Having a good programmer is crucial.  Mine is a nurse practitioner.  She is a good listener and has excellent emotional intelligence.  

DBS is a whole new world.  We are the rare ones.  A lot of people even in the medical field have never even heard of it.   

Trying to make the most of DBS and my life now that I have this second chance.  So grateful for this treatment. 

 

Share this post


Link to post
Share on other sites

Great reply Kaydee, really good ,I got a flappy arm, no, I used to have a flappy arm, my old chicken arm.  That is now gone with the dbs, or rather that is much better. I used to have restless legs like crazy, that sorta passed when I was on the bigger dose of Levadopa.  Pills for my Parkinsons were up to about 14 levadopas daily, a couple selegeline and that was it. I have wondered before if any parkys have restless arm syndrome. If I go to bed feeling that my dbs is too much, my arms can feel floppy. Flappy arm syndrome. (Flas). See, now we are getting somewhere, and that feeling is every bit as bad as restless leg syndrome.   My stimulater can be turned down to 2.0 on  my left and 2.1 on my right.   That is where I go for bedtime.  In the daytime I go back up to 2.2 and 2.3 although my machine controller allows me to go to 3 on either side.   That is not comfy at 3 though. Makes me feel crawly.  My programming doctor is sure that I do not need to ever go as low as 2 but..unless I am in the middle of an empty 100 acre field with room to move about, i cant go above 2.4.  I think that the problem for programmers is that they don't wear the stimulater and rely on my descriptions to set up the program.  Overall  though Kaydee, I am happy with the dbs machine.  I now take only 4-5 levadopa per day. and no dreaded off period.  Have a good weekend.!

jb

 

  • Like 1

Share this post


Link to post
Share on other sites

ps.  I am a 170 pound Male, and my setting on dbs is likely higher than a smaller person,  I always push my doctor for a lower setting. My setup allows me 2.0  to 2.9.  Yours obviously goes much lower  Kaydee.  (.85).  The only way for me to go that low is to turn my machine right off. thanks for your input.

 

Share this post


Link to post
Share on other sites

6jb49 - which system do you have? I have the St. Jude-Abbott which is in mAmps and not volts.  

Relationship between mAmps and Volts is: 

I(A) = V() /R(Ω)

R = impedence = 1237 for me initially with first program.  I know it increased after the programmer switched it to 1/3 of the directional lead it went up to a much higher impedence but I don't know the exact number.  It is not visible on my controller. It was above max though. She didn't seem worried though. 

1.40 mA ~ 1.70 V (with 1237 impedence) program 1 (no directional lead)

So my estimate for 1.4 mA w 2500 impedence is 3.5 V. ( program 2 w directional lead)

So can't compare the two without knowing impedence and using directional leads can increase it. Since stim is going through smaller area. 

The last time I went in for proramming (really a check up) the programmer lowered my lower limit without me asking.  I haven't needed it though.  I have a pretty big range to play with.  .5 to 2.5 on the program I use. 

Brain stimulation is a whole other feeling.  How long have you had your DBS?  Sounds like your DBS is working pretty well.  I am looking at my current situation as my second chance at life.  Gotta enjoy this time I have now! Trying new stuff, taking trips with my kids.  I still get tired but I can make the most of this new DBS me. 

 

Share this post


Link to post
Share on other sites

I wondered about that.  Was I comparing apples to apples. Mine is a Boston Scientific dbs.  I don't even know what the numbers are on my controller.   And my leads are directional.  Tonite, my dbs machine is running at 2.1 on the left and 2,2 on the right.  I took 2 levadopas earlier today and this evening at about 7 I took a half Levadopa and I will pop the other half when I turn out the lights.  I will leave my  dbs as it is and mess around with the number of pills I use.  The key should be my record keeping  and how well I report to my programmer doctor.  The machine has done a good job for me today.  Again.  I am pretty lucky.

good luck and blessings to all.

 

Share this post


Link to post
Share on other sites
3 hours ago, jb49 said:

I wondered about that.  Was I comparing apples to apples. Mine is a Boston Scientific dbs.  I don't even know what the numbers are on my controller.   And my leads are directional.  Tonite, my dbs machine is running at 2.1 on the left and 2,2 on the right.  I took 2 levadopas earlier today and this evening at about 7 I took a half Levadopa and I will pop the other half when I turn out the lights.  I will leave my  dbs as it is and mess around with the number of pills I use.  The key should be my record keeping  and how well I report to my programmer doctor.  The machine has done a good job for me today.  Again.  I am pretty lucky.

good luck and blessings to all.

 

Dear JB and Kaydee,

Just as I post my answer, I see you both have  a Boston Scientific Dbs. I have a Medtronic so programming may be different. I go forward with my post as there are general  considerations as well. 

JB, I am so glad to read that you are “Happy to report that [your stimulator] is running pretty good now.”  How wonderful to see you have been under the best hands! If you ever meet Elena Moro, tell her her reputation  among patients spans across the Atlantic from Grenoble to Toronto through New Brunswick.

Let me share with you my personal experience, as a sort of pioneer back in 2000.

The situation was entirely different, we were still in the experimental phase; the programming equipment was cumbersome (the size of an attaché case) and there was no remote control for the patient. Therefore doctors were far more cautious in their choices of parameters because the patient would be left with whatever settings were chosen and no other option than to keep these settings until the next appointment.  Even switching on and off the IPG was an unwieldy procedure: you would need to apply a strong magnet on the stimulator and count to 8 to switch it off.  The procedure was so erratic you made sure you would not have to use it!  As I was living only one hour from the hospital, my neurologist was willing to see me as needed, in case of uncomfortable situations;  I  guess he felt responsible for the  poor results of the parameters chosen and wanted to make up for it. He even gave me an appointment on Easter day.  The only part we, patients, had in the programming procedure was to tell the neurologist how we felt with a given setting.  A simple, oral report.  No standard form nor wording.  

It takes time to explore all options available, given your individual case, the exact position of DBS electrodes within the STN and various other parameters.  At the time, doctors did not aim at stopping  meds  altogether, as it was deemed to favor depressive mood.  My meds  were considerably reduced, I don’t have the exact figures in mind but the change was quite impressive.  Surgery stopped my tremors altogether and I have never had any more tremors since March 15, 2000, the day of my first DBS. This in itself was quite an achievement as it was my major symptom. Then again, I developed walking problems which I had never experienced before. I also had stimulation induced dyskinesias.

What I would like to stress is that programming takes into account the exact position of your electrodes in the STN. The location will induce certain effects which will   apply to your specific case and not to another patient whose electrodes are located differently.  What   applies to Patient A will not  necessarily be true for Patient B.     That’s why, given the complexity, you need to Have a really dedicated programmer  who wants to achieve best results for his patient and who does not give up easily. The programmer plays a major role in a successful DBS surgery.

Take good care both of you and keep us posted.

mireille

  • Like 1

Share this post


Link to post
Share on other sites

Thanks Mireille,  

For your advice and blazing the way 18 yrs, ago.  I realize that my biggest job is clear and concise reporting of symptoms, and medications I do take to my programmer on my next trip to Toronto. In the meantime, I can say that I do feel a lot better, and I have hope that I can get things even better.   Thanks Mereille.

jb

 

 

  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×