Deep Brain Stimulator

[Beth1949]

I know this is way out of this forum, but I can't find a group to discuss with.

I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results.

At the end of May I had my other hand (side) done. The neurosurgeon put the battery pack so high on the left side of my chest (underneath my skin), that it limits my arm movement. The Dr said that my body will adjust, just give it another month. If not, he would move in down.

Has anyone else had the same problem?

Thank you, Beth

[peege]

Hi, would this be a similar procedure to the brain stimulator used in Parkinson’s? If so you may have more response on the Parkinson’s forum......I'm guessing that there is one on HealthUnlocked 🤞 🤔 . I dont recall anyone mentioning this on AsthmalungUK before but you may be in luck. Take care. Peege

[Beth1949 in reply to peege]

Yes, some type of Parkinson can benefit from this procedure. I'll try to find a Parkinson group.

Thanks for the device, Beth

[Patk1 in reply to Beth1949]

My neurologist wanted to send me to be assessed for ths but I'm v reluctant.have u had gd results from it? My et is bad

[Beth1949 in reply to Patk1]

Yes, I'm very happy with the results I got when I had my dominate hand done 11 yrs ago. They put an electrode in the one side of the brain, wire from the electrode to a battery pack in the chest (under the skin). The battery needs to be changed every 4-6 years (outpatient procedure). The battery pack is about the 2 in X 3 in in size.

Having my dominate hand not shake is wonderful. I can turn the device off at night to save the battery life and turn it back on in the morning.

This time around, I'm not as happy. The battery pack in my chest is too high (right below the collar bone) and thicker. My shoulder is still sore (it's been 7 weeks since the surgery). If I'm wearing a V neck shirt, you can see it. I'm thin and flat chested, so it really shows. My arm movement is getting better, but still limited.

Good luck, Beth

[Patk1 in reply to Beth1949]

Thanku.tremors make simple things difficult.im glad you've had success.hope yr electrode box beds in for u.did they put u to sleep for it x

[Beth1949 in reply to Patk1]

When they put the electrode in you have to be awake so they can tell if they got the right location. But you are numbed, so you don't feel any pain. After they find the right location, they will put you to sleep to do the wiring.

[Coughingalltheway]

There are several devices similar to your that are used to help control seizures in epilepsy. There are many support groups for this condition so maybe check those? I'm fairly sure that someone would have had a similar problem to yours.

Good luck.

[Beth1949 in reply to Coughingalltheway]

Thanks for the advice, Beth

[janedivney]

I’ve been recommended to have Focused Ultrasound for ET, but I’m very reluctant, even though the risks are minimal. ET is unbelievably restrictive & I don’t think people realise how much it can impact your life when it’s bad. Have you thought about FU rather than DBS?

[Beth1949 in reply to janedivney]

I am not familiar with Focused Ultrasound, my neurologist has never mentioned it.

[janedivney in reply to Beth1949]

You can read about it & watch the video here tremor.org.uk/about-tremor-...

It’s not been available on nhs very long, and not many places do it. IF I changed my mind I’d go to St Mary’s in London, but I don’t feel ready for it yet! None of the drugs which lung patients can take have helped me 🫤

[Beth1949 in reply to janedivney]

I live in the states and have never heard of the use of Ultrasound. Nor have my doctors mention it.

[janedivney in reply to Beth1949]

I googled it and it’s definitely available, all over the US, for ET, but maybe your neurologist thinks DBS is best for you fusfoundation.org/search/Es...

[Patk1 in reply to janedivney]

Have u tried primidone jaunedivney

[janedivney in reply to Patk1]

Yes I have, and it was starting to help, but it made me feel mentally unstable, so I stopped it. Such a pity

[Patk1 in reply to janedivney]

Oh no! There are alternatives but I can't think of name,offhand.the primidones not perfect for me,but I'm better with them than not.x

[janedivney in reply to Patk1]

I’ve been wondering whether to try it again but it really made me feel zombie-like. The best drug is said to be propanolol but we’re not allowed to take that. I’ve tried gabapentin, didn’t work. I know it’s a benign condition, but added to everything else… it’s very hard. I can’t write, sew, cook or make a drinks, and have to use two-handled mugs, and eat with a spoon 🙄 Thank goodness I can use a mobile, on large keyboard, tho even that is getting difficult. Moan moan! X

[Patk1 in reply to janedivney]

Yes it is hard.i was already on bisoprolol and gabspentin for other things,& they had no impact on it.yr allowed a moan whn so badly affected.im sure there's a drug beginning with t,that's an alternative. It took 3 primidone to have some impact I now take 4 at nt '- could take 5 but didn't get any added benefit.oh the joys of getting older! X

[janedivney in reply to Patk1]

The one you’re thinking of is topiramate. I was offered that but decided there’s too high a risk of it affecting cognitive function. As you say, getting older is no fun at all! X

[Patk1 in reply to janedivney]

Neurologist offered to me but I wasn't keen due to potential side effects too x

[Beth1949 in reply to Patk1]

Yes, I have taken primidone for years