ETTERUS, VIVACE 1017 AND HIDDEN. HOW ARE YOU FEELING, SEVEN OR EIGHT YEARS POST DBS SURGERY?

[OREOLU]

Hi Etterus, you a retired PT had DBS done at a hospital in Oregon Portland, according to your post 7 years ago, you were very satisfied with the outcome of your procedure. So far, are there any trade off or side effects now? How is your balance now? I know you are a none tremor dominant pwp.

@ VIVACE1017, your initial periods post DBS was not favorable according to your post. Kindly give me your opinion about how you feel now in terms of the pros and cons.

@Hidden, you were also very much satisfied with your early days post DBS. How do you feel now and how long do you think the positive outcomes will last.

I am about to make a very important decision in my live, as I am a pwp ,with little family support and have been on medication post diagnoses in 2016.

Your responses will be highly appreciated.

[Pauldmd]

I had dbs surgery in 2008, diagnosed in 1999. I have been very satisfied with the results but my results were unusually good. No medication for pd since the surgery until a few months ago. If there is anything i can do to help you with your decision, please let me know.

[glenandgerry in reply to Pauldmd]

Wow, that's very impressive. So pleased for you.

[pdwife41yrs in reply to Pauldmd]

Hello! Yes, I agree, the results of your DBS surgery were unusually good, amazing, actually. My husband, diagnosed with PD in 2008 did the surgery last August. The stimulator was turned on 6 weeks later, the results were life changing, it was like a miracle. All of the PD side effects disappeared, except the speech problem. Recently, about a couple of months ago the freezing started again. He never stopped the levocarb after the surgery, but took it only once a day as per the neurologist prescribed. Now the med is 4x/day as freezing frequency is up. We are still happy with the DBS surgery as his life is way better than before the op.

All the best to you, Paulmd.

[JeanieBeanie]

My husband who had DBS done in 2005 says "Do it". His was wonderful for his tremor dominant PD but did affect his walking. You will need to experiment with your meds to get the correct dose. He has had PD 28 years but despite some problems with DBS he is still glad he had it done. The procedure has progressed so much since he had his op also. I would definitely ask what it would improve in you if your PD is not tremor dominant though.

[OREOLU in reply to JeanieBeanie]

Muscle rigidity , I suppose, to enable me function with Activities of daily living, like walking and transfers.

[JeanieBeanie in reply to OREOLU]

There is a new procedure called Boston Scientific that our PD nurses think has less complications. This is being done in the UK but I am sure it is an American Company.

[eschneid in reply to JeanieBeanie]

JB.....how did it affect husband's walking & did it resolve itself? I play 🏀 and would be bummed if I had to stop. Anything you feel like mentioning that did or did not get better from the procedure would be appreciated, thanks.

[JeanieBeanie in reply to eschneid]

It's about getting the settings right. Nothing has improved his walking but he is one of the few people affected by this. It is also 16 years ago and things have improved. What we have learnt is that it is necessary to get your medication dose right. Too much can cause problems. Would be good if you could speak to someone who has had the op done by the Neurologist you are looking at doing it for you. By the way, he was 56 when he had the op.

[eschneid in reply to JeanieBeanie]

Thanks for response & suggestion JB.....have a guy in mind, at some point will move forward. Stay healthy.

[JeanieBeanie in reply to eschneid]

Goood luck and keep us posted.

[Jennyjenny2]

A friend of ours had her DBS done approx 7 years ago and feels and looks amazing. Her advice would be to do your homework first on the person performing the operation.

[OREOLU in reply to Jennyjenny2]

I am definitely doing my research now on the best hospitals and neurosurgeons who do this. Thanks for reply.

[trishtheteacher]

I had DBS Surgery two months ago and can’t recommend it highly enough. Best decision I ever made.

[OREOLU in reply to trishtheteacher]

Hi trishtheteacher

Are you tremor dominant or otherwise?

[trishtheteacher in reply to OREOLU]

Yes, tremor dominant

[Park4me]

Has anyone with Pd pain and dyskinesia been helped with DBS?

[JeanieBeanie]

Hi OREOLU. Just updating you. Been to see my husbands PD nurse for his DBS and she explained a lot about the latest DBS surgery. Apparently the op can be for PD symptoms or tremor depending where it is implanted. She said it is very good now and successful. While we were there we saw a patient who had had the op and you wouldn't have known he had PD. He hadn't had PD for as long as my husband though but he must have been very happy with the result. Hope this helps with your decision.