DBS Off vs DBS On - Deep Brain Stimulation

[Ianfrizell]

Hi all

This video shows the effect that Deep Brain Stimulation (DBS) has upon my Parkinson's Disease symptoms. I perform a number of tasks with DBS switched off, and then repeat them with DBS switched on - the difference is amazing!

youtube.com/watch?v=D0Hlo_5...(Not working as expected?)

Cheers,

Ian

[24071950]

I can't believe the change when switched from on to off. Awesome.

[Nivrac77]

Thank you for sharing Ian. It helps others better understand the actual impact of DBS and how life changing it can be. Best wishes in your fight in our common daily battles with it.

[Enidah]

Thank you Ian! I definitely plan on having that surgery down the road when I need it. You mentioned that there are things it didn't help and things it made worse, would you mind talking a little more about those?

[Ianfrizell in reply to Enidah]

It's difficult to give a definitive list, because so much depends upon the programming of the device. In my case, my current settings don't help my muscle weakness and rigidity (but previous settings have done so), my current settings have made my voice weak, and my balance and walking are a little wonky. My programming focuses on tremor relief, so it is worth it (to me) to sacrifice other things to achieve better tremor control.

[Enidah in reply to Ianfrizell]

Thank you for that information. I don't have tremor dominant symptoms so when the time comes I will have to consult and find out how much help it would be for me.

[Dottie2 in reply to Ianfrizell]

I'm considering DBS soon. Did the DBS actually cause balance & voice problems or did you have them before. I only have tremors at this time

I'm so afraid I'll have this done & it cause other problems.

[Ianfrizell in reply to Dottie2]

Hi Dottie2. I had some mild balance and walking issues prior to DBS. My balance and walking have declined slightly, although I am still not actually falling! My voice has definitely weakened as a consequence of DBS, but that is very dependent upon the settings of my device - the better the tremor control, the weaker my voice. I accept the side effects as being worth the tremor control and, if faced with making the decision again, would choose to have DBS without hesitation.

[Dottie2 in reply to Ianfrizell]

Thank you so much. Thats good to hear. I'm such a coward....don't know if I'm capable of making a decision to have this done. :).... but thinking I'll get the Dr. to schedule the testing to see if I qualify. Praying God will just close the door & I won't qualify if this is not the thing for me to do. Praying for you now.

[Cookie1124 in reply to Dottie2]

That's a good subject. I had major tremor problems and the DBS corrected them 100 percent. Then I developed balance and walking problems and voice problems that i had to a small degree before but I hadn't had a major problem with like I now do. My doc says that he thinks it's because we went off too much medication too soon after I had the DBS and he increased my meds. Presently the walking/ balance problems are getting better. I have to say that there are different places they can place the leads which help different PD symptoms, among these are walking/ balance problem/speech. When determining where the target areas should be this should be taken into consideration. I think this is the key to success.

[Kpapa in reply to Ianfrizell]

i dont have tremmors. could the settings be programmed for improvement in my speech

[Cookie1124 in reply to Enidah]

When considering DBS look at the ASLEEP DBS . Is is only offered ar a few places in the US. My neurologist was skeptical of this (asleep type) and after I went through it he was quite impressed with the lead placenent. It was qiuick to respond when turned on and my tremors were gone right away. In awake DBS the probe has to be inserted more than once increasing the chances of a brain bleed. In Asleep DBS the sophistocated MRI determines the exact location where it should be placed as well as the path it should take to get there. And you don't have to go into surgery off your meds and shaking. It's only common sense, the asleep is better.

[chonz123 in reply to Cookie1124]

I had DBS while asleep. Dr.mark Richardson at UPMC. Pittsburgh did mine.

[Sleeplessparki in reply to Cookie1124]

Cookie you hit the nail on the head asleep is the only way to go. I had mine done at Brigham and women’s hospital in Boston they do only the asleep no longer do awake. Great experience for me.

[Hikoi]

Godvdeo Ian. Thanks

[Pelley]

I have had my DBS in over 5 years and recently one battery change. I am very pleased with the increased quality of life. I am a virtual carbon copy of this. Thanks of rhaving the wherewithal to put this out there Ian!

[movinngroovin]

Me too Ian, me too--no meds!!

[Hollandaise]

Dottie2 you are not a coward, one must be realistic about DBS. In my case it causes a lot of new problems so consider it well if you want to take this risk. Most people benefit but not all.

[Kpapa in reply to Hollandaise]

what new problems

[Hollandaise in reply to Kpapa]

Balance was worse, walking, swimming. I allways lean to the right which caused serious back trouble. The first years it was a nightmare but after four years we finally found (ourselves) the right tuning: a low frequency. All the time they tried to fix it with the right points on the electrode, and less or more volt. It didn t work at all. They never touched the frequency or the pulse withd.

I hope you understand, my english is not so good and this is a difficult issue.

[isis6361]

Please realise this doesn't suit everyone and the criteria qualify for it is strict. It must be discussed with your teams.