MY DOCTOR SAYS I AM DUE FOR DBS. THIS REALLY SCARED THE SH.......... OUT OF ME. PLEASE HELP! I NEED YOUR ADVICE.

[OREOLU]

I am a young onset non tremor dominant PWP,in my fifties, on Rytary and I have reached the stage where my medication does not work well like before anymore, a stage where it has become very unpredictable, whether I will get "off" period or dyskinesia, unless I increase my medication dosage. However, this means more dyskinesia. So, if you are a non tremor dominant PWP and have had Deep brain stimulation done, please respond.

My cogent questions to you are :

1) When did you get your DBS and what equipment did you get?

2)How long did it take for tunning to get the right setting?

3)What trade offs did you, or are you experiencing ? Examples, speech, balance, personality changes, mood swing, increase sleeplessness, numbness of extremities, stroke.

4) Are you still on medication? If so,any reduction?

5)If you live in the USA, where did you get your DBS done?

I will very much appreciate your reply.

[jimcaster]

I have no experience with DBS, but I am non-tremor dominant as well. If I were in your position, I would be more inclined to confer with SoniModul in Switzerland regarding Pallidothalamic Tractotomy (PTT). I think Trixiedee was not tremor dominant and had a good experience with SoniModul. Best wishes with whichever route you choose.

[jeffmayer]

I was offered dbs last year but turned it for the same reason scared me too death I confess to not knowing much about it just the thought of it scared me too death I will cope as I am for the moment

[Bill55]

I have non-tremor dominant PD. YOPD diagnosed at 46. Had unilateral DBS in April of 2021 (L) at age 58. No surgical problems. As a result I am less stiff on the right side and have most of my dexterity back on that side. I can now easily roll over in bed. My incessant right side toe tapping has stopped making it easier to drive. My Rytary dosage is cut in half with a resulting reduction of dyskinesia. Tuning is going well. Only downside is some increased freezing first thing in the morning before my first dose of Rytary I have the Boston Scientific Vercise rechargeable model. I would definitely have it done again.

[eschneid in reply to Bill55]

Bill,

Where did you have it done in the US, thanks.

[Bill55 in reply to eschneid]

Medical University of South Carolina (MUSC Charleston)

[eschneid in reply to Bill55]

Thanks Bill, hope it works for you for a long time.

[Bill55 in reply to eschneid]

Me too. Thanks.

[JohnPepper]

DBS is irreversible and can be dangerous. There are no meds that have ever been made to cure Pd. Why would anybody do that?

I have had Pd symptoms since 1963 and have been fighting it since 1994. I have been Pd-medication-free since 2002. Ifg you are prepared to put in the effort then I am prepared to help you, free of charge, becaouse only YOU can do this! Email me at [e-mail] anI will send you videos and lots of positive information.

[Park4me]

I was told the same thing by my neurologist about 8 months ago. I was adamant that I was NOT going to have the surgery. Yet my quality of life has changed drastically. Lots of pain. 16 Rytary a day plus more of other pills. Roughly 118 pills a week. Still have off times. Barely drive. So I started reading all I could about DBS. Facebook has a DBS group you can join and read others posts and ask questions. It’s been great for me and I’ve talked to several DBS patients for their opinions. And to John above- hooray for you but I exercise everyday and it makes me feel better but I’m not able to be med free. So OREOLU the choice is yours. I can tell you the majority that have had it say they would do it again. It beats the alternative

[Park4me]

Oh, I might add that I am in the process of testing to see if I’m a candidate for the surgery. Had 2 information appointments, an MRI and a psychological evaluation. Then they do an appointment with you off your meds for evaluation and one with you on your meds. Not sure after that. But my surgery if I pass could be in April. I am scared as you but ready

[Bill55 in reply to Park4me]

It really wasn’t that bad.

[LAJ12345]

Have you tried all the natural interventions like exercise every day and following a strict natural diet, even gluten free, dairy free? And the various supplement recommended like b1, plus red light helmet?

I think the fear of the treatment might be making you feel worse too and exacerbating the symptoms.

I don’t have PD, my husband does, but I would be giving every natural intervention a very serious try first. And maybe go to another specialist if possible for a second opinion on your medication just in case one of them are causing side effects making you feel worse.

I would then consider DBS if you have already tried all that though.

[gginto in reply to LAJ12345]

Absolutely! I have heard of good outcomes with DBS, but this is an invasive operation... Personally, I would exhaust every other avenue until I found relief... Good Luck!

[Park4me in reply to LAJ12345]

Believe me I tried everything! I was going to find a cure! Nope. Parkinson’s is a tough fighter.

[jeffmayer in reply to LAJ12345]

Agreed for the moment exercise is definitely the future

[hanifab23]

Dbs Nov 2019 Stanford After dbs lots of additional symptoms

Dyskinesia so bad uncontrollable with meds

Meds added more looks like it is not working

Fir me

Boston scientific equip

Tremor 100 gone

Had left hand tremor only

[Skydome in reply to hanifab23]

Is your quality of life better or worse today than pre-DBS? Is your dyskinesia still uncontrollable? Any additional symptoms that you did not experience pre-DBS? Thank you for sharing!

[virgo1234]

Hello,My husband had DBS surgery on both sides this last spring. He is 54 years old and diagnosed at 47. We were also very scared, but we trusted in our doctors and it has turned out to be the best thing ever! I am so glad we didn't wait because his quality of life has so improved!

In answers to your questions,

1. It was a series of three surgeries he underwent in the spring of 2021, finishing in April or so. Two in the head and one in the chest for the battery pack. He has a remote control that turns the device on and off. The company is Boston Scientific.

2. He has gone in for tuning roughly once a month since April. As his brain swelling went down, the DBS needed to be adjusted. His last tune has been so great! He is a completely different person than the one with Parkinson's. He is back to the person I married. His tremor is gone, he moves A LOT faster, not as rigid and his mood is better.

3. I cannot think of any negatives or trade offs that he is experiencing as a result of the surgery. No new problems caused by the DBS.

4. His medication has been reduced by 50%. He now feels so good that he really forgets to take it a lot, which by the end of the day has an adverse effect on how he feels.

5. We live outside Chicago and our surgeon is from Northwestern Medicine.

Hope this helps,

Please reach out with any more questions.

[Trixiedee]

Look for my old posts. Too busy to repeat myself I'm afraid!

[OREOLU]

Thank you, everyone that responded to my post. I guess ,I will have to decide eventually which way to go. May God help us all. Amen.

[Sherry1960]

I had DBS in June 2022. The biggest motivating factor for me was painful dystonia in both of my feet. I did a lot of research on the procedure and the neurosurgeon. It has helped my dystonia a great deal. I have had two programming appointments. I was told it could be six to 12 mos for the programming to be completed. The biggest drawback so far is I battle with unsteadiness at times when I stand up quickly. It helped with my tremor on my left so side.

[Sherry1960]

My meds have been reduced some. My neurosurgeon is hoping at least 25 %.