DBS Switch on last Thursday

[gingerj]

After the successful surgery on new years eve. I went for the 'switch on' this week. The process was exciting and much quicker than I had expected. The Dbs nurse connected her medtronics setup software to a device that I held over my inserted DBS implant.

She ran a couple of routines where the software read my brain beta signals and determined which node and direction the signal should emanate from to best flatten (neutralise) them.

She then ramped up the signal strength on each side and watched as my very evidant tremor faded to still. Wow.

I also felt a cold wave drop over me as the tension in my shoulders and limbs fell away. Double wow.

She then dropped the strength to 50% and asked me to walk up the corridor. Ive never found walking to be a problem but I did stand straighter and she noticed both my arms were swinging.

I was disappointed that she then dropped the strength to minimum so that I was able to take my meds at this point.

She went through the setup of my equipment to allow me to make minor adjustments and charge my devices. Still a very promising experience.

All done in 30 minutes.

I was able to leave and let my meds kick in properly on my way home.

I have noticed that my involuntary movement has increased since the switch on. Quite considerably today.

Could this be because I am over stimulated and/or over medicated now. I will contact the hospital to ask next week. Hopefully I'll get an answer before my next tuning appointment in two weeks.

Im now hoping to begin gradually reducing medication now. We will see. 🤞

So far so good.

[MBAnderson]

Good for you. I think it often takes a few visits to get the program just right, but you're well on the way.

[gingerj in reply to MBAnderson]

Yeah I went in expecting little if any improvement. But when she said that I had very good Beta signals and that that was a good thing. I allowed my hopes to increase. Hopefully they can help with this heightened dyskinesia without affecting any chance of improvement elsewhere. 🤞

[Maple-st-tig in reply to gingerj]

hopefully that can isolate whatever is causing the dyskinesia. Meanwhile congrats on the other improvements!

[gingerj in reply to Maple-st-tig]

As it turned out, the intense dyskinesia only lasted 4 days then stopped. When I talked to the DBS nurse about it she said it's quite common as your brain gets used to the new signals. Im currently waiting for my second adjustment appointment this afternoon. Hopefully positive 🙂

[Erniediaz1018 in reply to gingerj]

God bless. Keep us posted

[Maple-st-tig in reply to gingerj]

I had DBS surgery a little before yours. One side 31oct24 and other side 12dec24 then first programming 12jan25. Dyskinesia has been a big issue. They are trying to wean me off 6 25/100 c/l and am down to 2.25 c/l per day while slowly increasing the stimulator. It’s helped with dyskinesia but pd symptoms are worse than ever. Trying to “trust the process” like the nurse practitioner says and hang in there. Just had second programming appt and I am to turn it up very slightly once a week till next appt.

Glad your dyskinesia has been resolved.

[gingerj in reply to Maple-st-tig]

Ive just had my second appointment. Ive been told similar. To leave my meds as they are whilst taking the therapy level up from 1 each side to 1.6 stepping up 0.1 every three days. At which point ill be on appointment 3. So I'm on 1.1 today. I've noticed an increase in dyskinesia already but not as vivid as when first switched on.

[HelloIttisme]

How long was the process? First appt, surgery, recovery, to power on?

[gingerj in reply to HelloIttisme]

I was referred by my Neurologist spring 2023. The levadopa challenge was on 25th July 2023, then followed two cognition tests and a psychiatric assessment. The surgery was kn 31st January 2024 and switch on 6th February 2025. So in all it took about 2 years.

[Patient100 in reply to gingerj]

I assume you meant your DBS surgery was performed on 31st December 2024 (not 31st January 2024)... Good luck - please keep us updated on your progress!

[gingerj in reply to Patient100]

Well spotted. Thanks 😊

[Charaf1959]

Bravo

[gingerj in reply to Charaf1959]

Cheers

[jeeves19]

Good luck Ginge

[gingerj in reply to jeeves19]

Hj Jeeves. How are you doing. Have things improved with your depression? It's been over a year since you had DBS. How is it for you now? Did you have the medtronics device and if so have they talked about closing the loop and seeing if it can self regulate your symptoms?

[jeeves19 in reply to gingerj]

I’m doing okay thanks. My ‘depression’ is more along the lines of boredom mixed in with having no real purpose in life whilst all my mates are at work. The main pain in the ass is that it’s affected my speech? There’s been nothing mentioned about the closed circuit yet, but I’m seeing them in March and I’ll raise it then. Hope it all works out for you.

[gingerj in reply to jeeves19]

I kinda understand about the boredom and lack of purpose. I'm feeling that too even though I do hope to return to work. Its a physical job and I have concerns about my left hip which gives me increasing pain. Made worse with these strong unwanted jerky movements.Is there a chance that March will offer you a solution to the speech issue or is that it now?

[jeeves19 in reply to gingerj]

They set up a speech channel which is useful but requires some setting up when I use it. But it’s less powerful than the original hence I sacrifice movement for voice?

[gogofloat]

hi there, good to follow your experience. I had my ZdBS operation on 6 January and I’m going into hospital tonight to stop my meds and do the switch on. Can’t wait, but also very nervous as I find it hard to imagine what it will feel like.

One question, the surgeon insisted that the extension leads were correctly fitted but the do seem to pull very tight and stick out despite my following a gentle exercise routine.to ease the neck. I will add more details of my experience tomorrow

[gingerj in reply to gogofloat]

Good luck tomorrow. Hopefully you won't feel too bad off meds. I was off from 8pm until 11am and felt terrible. However this made the positive switch on experience even more evident. Im also concerned that the wires run visibly from the device over my collar bone and up my neck. I think they must be strong and I'll get used to them.

[DogsWoode]

Ginger! Exciting to hear. You've had that initial experience.....thanks for detailing it. Double wow. And yes, my understanding too is that it takes a few visits to calibrate. Will wait to hear more. We're behind you!!

[gingerj in reply to DogsWoode]

Thanks DogsWoode.

[Gallowglass]

thank you! My turn on is on 3 wks.

[gingerj in reply to Gallowglass]

Hope your switch on is just as positive. Let us know. Good luck 🤞

[Pauldmd]

I had my DBS surgery done in 2008. I had the same experience with dyskinesia. The level of stimulation has to be reduced. I was able to go without meds until 2021. That is not a common result. I am still benefitting from the DBS surgery. Just be patient and keep getting adjustments. You will be glad you did .

[gingerj in reply to Pauldmd]

That is a great result. No meds for 13 years. I'd be happy with some of that. But I expect that's as likely as a lottery win.

[Erniediaz1018 in reply to Pauldmd]

Very encouraging thank you

[JerryinSATX]

Ginger,

I am excited for you to get tuned in so to speak. My DBS surgery was in early November of ‘24 and I’ve had 2 programming sessions so far (late December and January 10). My first programming session was kind of fraught with tremors as I was off meds from 8pm the night before until 2pm. The second programming session was much smoother. The only downside I can think of is I have 3 different scenarios where I can adjust the stimulation. I have Original Settings, Sensing G on RSTN, and C. I can tweak stimulation on Left or Right in all 3 scenarios such that I am confused as to which one needs to be tweaked. I see my MDS on Friday. Adaptive DBS is supposed to be available soon and I am ready for it. Yesterday it was easier to live with mild tremors than to figure out how to modify my settings to get rid of them.

I am glad I live in times where research is leading to transformative treatments for neurological disorders.

Take care,

Gerald

[Lulover]

Thanks Ginger for the very helpful information. I had stage one (installation of the leads) last Wednesday and on February 14th I will have the battery installed. Will be turned on in April.

[gingerj in reply to Lulover]

Hi lulover. So that's the difficult bit done at least. The device implant is routine I'm told. It'll soon be April and I hope for you a positive switch on. Good luck.

[Lulover in reply to gingerj]

I had my first programming session yesterday and it was very interesting. The neurologist and the representative from Boston Scientific seemed to have expectations that I would be feeling. Somethings, like tingles and warm feeling in different areas and parts of my body. But I had none. Another interesting thing is that the tremor in my right hand didn’t stop and the assumption was that it would.

When we finished they explained to me there is different Neuroplasticity in the tissue in various parts of the brain and some of them don’t respond for 15 or 20 minutes or maybe several hours

Actually I left feeling somewhat disappointed. Clearly, they had expectations that some things would be felt by me, and it didn’t happen. But this morning was different. I Woke up with the best night sleep I’ve had in months. And there was no tremor. Dramatic differences. I can’t recall the last time I awoke with no tremors. Now (it’s 2:15pm) and I’ve been up since 5:30am, already an 8 hour day and still no tremors plus I have more energy than I recall feeling for some time.. this is quite a turnaround and I’m excited. In fact, I’m amazed. I’m curious if changes similar to these will continue or not.

It’s been very helpful for me to learn other’s experience. I’ll keep you posted occasionally as well.

[gingerj in reply to Lulover]

Wow,that's great news. I'm really happy for you. Please do keep us updated.

[Juliegrace in reply to Lulover]

My husband reminded me that during the first week after my first programming session I called the nurse crying because I was so miserable, which I had forgotten because now I’m am (mostly) doing so well. It took several sessions to get the program that helps me the most and I still have a couple of symptoms that break through occasionally,but overall we are thrilled with the improvement. It definitely takes time, sometimes hours or days for the improvement to occur and even after several weeks on the same program, sometimes I have to adjust the amplitude to deal with the breakthrough symptoms.

[Erniediaz1018]

Hooray to all of you and thank you for sharing. I have an appointment at the end of the month with my neurologist. Can’t wait to let her know I’m ready for DBS, Rescue, if you’ll know what I mean. ❤️🙏🏽.

[luckyrock in reply to Erniediaz1018]

Ginger

I agree with Pauldmd that you are receiving too much stimulation. Tweaking the stimulation and meditation is needed. When I had my surgery I was surprised to learn that DBS can induce dyskinesia. Are you on Rytary or the new med,Crexont. ? They can help with dyskinesia Are you in the Boston area?

[gingerj in reply to luckyrock]

Hi luckyrockThanks for your reply. Im hoping that I can find a happy medium by slight reduction in medication. Before DBS I was taking stalevo 100mg pretty much every two hours. Im trying to push that out to every 2.5 hours and drop the last dose altogether. Right now i feel that this is working in the morning but afternoon dyskinesia is still bad. Perhaps i need to dial down the stimulation too.

[Jeagar815]

I had my DBS turned on in July. Your involuntary movement is a good sign. It means that you can titrate down the amount of medication you are taking. Congratulations and be well!

[gingerj in reply to Jeagar815]

Thanks, I'm giving reducing my meds gradually a go.

[Jeagar815]

Be wary of Rytary. I had a terrible experience with it. The extension effect didn’t work properly. It dumped too much levodopa into my system too quickly and stopped working too soon, causing severe dyskinesia followed by lengthy off periods. Piecing together information from patient blogs, because you won’t find anything about the problem in traditional source materials, I noticed several blog threads regarding the problem. They were all written by early onset women. I use extended version Sinimet.

[LagLag37]

I had surgery on 12/17/24 and I just had my 3rd programming yesterday and it went very well. My neurologist did the programming yesterday and she left me with a small about of tremor and a small amount of dyskinesia. As of yesterday morning I was taking 5-6 C/L's and 2 Amantadines . I had already gone off Azilect couple of weeks ago. My neurologist told me to quit taking the C/L in the afternoon and take the Amantadine instead. I looked surprised when she told me that. But I went home and tried it and it worked. I never knew that Amantadine could control tremor like that. I thought it just helped extend your C/L throughout the day. I went from 11:00 am to 8.30 that evening without any C/L with very little tremor. A few times my hand would tremor for a second but I would move my hand and it would quit. I took a 1/2 at 9:00 before bedtime but just for security purposes and I slept all night. She said not to take the Amantadine later than 2 pm because it could keep me up. I woke up this morning at 6:15 and feel almost normal. I took a 1/2 a C/L when I got up and so far doing good at 8:00 am. 🥊🙏

[Juliegrace in reply to LagLag37]

My programming is also going well, but I haven’t had time to make an extensive post about it yet. All I can say is that DBS has been life changing in a positive way.

[gingerj in reply to Juliegrace]

Great to hear it. The more we post about it the better the information is for others who are considering DBS

[LagLag37 in reply to Juliegrace]

Juliegrace,

Definitely yes!!!

[Sushibruno in reply to Juliegrace]

This gives me hope. Medication is not working for my husband. His doctor wants to talk to us about this procedure.

[Erniediaz1018 in reply to LagLag37]

This is a great report. Thank you for sharing.

[gingerj in reply to LagLag37]

That sounds great. How did you come of azilect. Gradually or cold turkey? So how much C/L are you taking now?

[LagLag37 in reply to gingerj]

I took 1/2 Azilect for five days and then zero after that. No problems.

I was taking 6-8 C/L's and now I'm taking 2-3 (1/2 a pill) 4-6 times a day and the Amantadine during the day, but it's not working as well as expected. So I'm going to try (Am) = Amantadine

1/2 C/L at 6 am

1 Am at 6 am

1 Am at 1:00 am

Rest of the day 1/2 C/L as needed

I just had a brief few minutes of tremors and then about 15 minutes of dyskinesia and now I'm fine. I'll let you know tomorrow how it goes. I might need to adjust the altitude. I feel I'm getting close to that sweet spot.

Debbie 🧠🥰🥊🙏

[Gumm]

sounds really positive. I am soHappy as I hope to have the same procedure in next couple of months could you tell me please ginger if the device inserted was compatible with the assisted DBS? Thanks. Be well.

[Erniediaz1018 in reply to Gumm]

You mean adaptive dbs?

[gingerj in reply to Erniediaz1018]

Thats it. 🙂

[LagLag37 in reply to Erniediaz1018]

I'm not sure if my DBS is set up for adaptive or not. I asked my surgeon if he knew much about it and he didn't seem to know anything about it. I'm was surprised because he studied at MIT and Stanford. My equipment is from Boston Scientific.

[Gumm in reply to LagLag37]

I Believe it is a recent development out of Amsterdam.

[Juliegrace in reply to LagLag37]

It requires additional hardware, some kind of headband, I think. It’s being touted by Medtronic but is not as revolutionary as they are making it seem, according to my team.

[gingerj in reply to LagLag37]

Im not sure about Boston Scientific. When my surgeon talked about the Medtronics hardware they were planning for me. He talked about the advances that have been made. At one time the brain probes needed to be very accurately placed in the STN. The ones they install now have multiple nodes at the end. Any one of which can be selected as the point from which the signal emanates from. Also the direction of the signal can be altered. In addition the same probe can read signals from the brain and return the data for analysis.This returned data is needed for adaptive DBS. The device/battery needs to be able to accept the data.

To make use of the data for adaptive DBS the software would need updating with the algorithm that was developed in Amsterdam.

So as I understand it, I have the hardware, but not yet the adaptive DBS software.

[LagLag37 in reply to gingerj]

It will be great when it comes out! Thanks for the info.

[Juliegrace in reply to LagLag37]

The adaptive DBS is from Medtronic. Talk to your Boston Scientific rep about it. They should be able to explain the pros and cons.

[Erniediaz1018 in reply to Gumm]

prnewswire.com/news-release...

[gingerj in reply to Gumm]

I am told that the medtronics equipment that I have is ready for adaptive DBS, but there is need to manually adjust the settings until its close to best fit before it would be switched on. It can however read read signals from my brain aswell as send signals.

[gingerj in reply to Gumm]

Good luck with your procedure. Make sure you ask your surgeon whether the equipment they are installing will be ready for adaptive DBS.

[Gumm]

thanks very much for your input ginger… Much appreciated! Be Well.

[Erniediaz1018]

youtu.be/fDWbjPOxH8M?si=hHV...(Not working as expected?)