DBS stage

[muragod]

What is the right time for DBS. At an early stage or later stage.I am on 4 sinemet+entacom per day with 3-4 hours rigidity.No tremor. Uneasiness prevails.But my neuro suggests to post pone.I am 60 now. any one can advise me.

[Hidden]

Good morning muragod

For me it would be the last thing i would consider. The risk of brain surgery is far to great. Meds if they work carry a very small risk. I take 15 sinemet (25/100) a day 3 every 4 hours and 1 6 mg requip at night.

I have no side affects.

I am 62 10 years with PD. I have never had a tremor just not part of my PD.

If you do not exercise please consider it. Exercise seems to be one of the best things we can do to help control our symptoms.

I work out every day and it helps a lot.

Good luck

[muragod in reply to Hidden]

thanks I m exercising & walking for 1 hour each.but problems are persisting even after taking herbal medicine+coconut oil.

[currydan]

I had DBS one year ago when I was 62, it was the best thing for me. I was taking my meds. Every two hours and starting having some issues with them. I now take meds. Only four times a day!!

I have had no problems since the D B S was put in. I believe that you must go into this operation knowing that it will help, it will not take the PD away. For me this has been a great thing . I had a great team of people that work with me, and a lot of people praying !!

[muragod in reply to currydan]

thanks I m on the same line of thinking

[Trixiedee in reply to currydan]

Did you have tremor or rigidity? Did it help with fatigue?

[movinngroovin]

Whenever you feel ready. It took me 6 years after my neurologist suggested it and I only wish I had done it sooner..

[Hidden]

Hi there

I am 54, diagnosed 2005

Without DB'S I'm sure I wouldn't be here. I have had dbs since

2013 after years of battling.

I was depressed tremors were all day

Stiff dystonic pain. I was at my wits end

It's been brilliant for me. Thank god for Scientists that invented it! !!

[mktbob55]

Do it now.

[Donzim]

Please realize that DBS does not address all PD symptoms. When my husband was evaluated at Shands, they told us that at the time it was only good for tremor. He was ineligible as his problem was gait. They were busy un-doing operations which had been done for things other than tremor. Check to see the chances that your particular symptoms can be relieved before getting it.

[Belfort in reply to Donzim]

My husband didn't have tremor and despite some major neuropsychological effects initially, he is now doing well - more than 5 years after the op. He exercises every day - 2 hours on his bike, swims, lifts weights. However his speech is soft and his articulation poor. Still, he doesn't do his therapy. When he does it makes a big difference.

[WtjrBill]

Good Morning Muragod,

Everyone is different and everyones PD is different. I had extensive tremors on first the right side and a year later the left side. I tried every type of medicine that they had and nothing worked. My neuro suggested DBS 4 years before I finally had it done. I wish I would had it done sooner. I was a meat market manager and continued to work thru the whole time. My first surgery was in 2010, left brain, then 2012 rt. brain then 2013 they had to remove the left side due to infection. Later that year they put it all back. Even with all the complications I would do it all over again. I guess you have to look at your symptoms an see what could be corrected with DBS. If your main problem is tremors then I definitely would. But, I see you don't have tremors. DBS brings on its own problems. Speech and swallowing, in my case, are issues. Your voice seems to go away with time. It gets really soft and you have to put a lot of effort into talking. I like to blame it on my wife hearing. Be prepared to hear a lot of whats, huh, blank stares, and anything else you can think of when people don't hear you. I was 58 when I had my 1st. surgery. I have been very fortunate. I've got a good wife, she has been right beside me the whole time - and a great team of Doctors, nurses and support staff at Shands in Gainesville. Good luck with your decision and have a great holiday!

[etterus]

I had mine 1 year ago after getting down to 130 lbs from dyskinesias and dystonia. I'm now 160 lbs. I also was up every 2 hrs trying to pee for 15 min, crawling to and from the bed due to foot dystonia pain.... That too is history.

Is it a cure? No. Would I do it again? Yes. I waited too long. The sooner its done the less damage to overcome.

I do recommend you find the best team approach possible. Not all systems are equal.

[vivace1017]

I had DBS a year ago, the same week I turned 62. It was scary surgery, even though I had great confidence in my surgical team. Things went very well for me, but it has taken a full year to get back to "normal." I was on sinemet every 3 hours before, and was having increasingly difficulty with dyskinesias. Now, I am only taking 4 sinemet a day. Most people do not even realize I have PD! No, it did not fix everything, but my independence is still intact. Energy is returning. While I cannot go back to much that i was doing before PD (diagnosed in 2008), there is still much living to do. I definitely am glad I did it!