When is the right time for DBS surgery?

I've been given conflicting advice as to when is the optimal time to have DBS surgery. I consider myself to be fairly high functioning ie, I still drive and work full-time. But now I walk with a pronounced limp. I can barely speak above a whisper and can't even hold a pen let alone write my name. Things are getting so hard I can't imagine getting harder. Would now be the right time?

16 Replies

  • I just complete all the stages now DBS. I can not put into words the difference this had in my daily live. This is fantastic off meds,no side effects, right now its like I do not have Parkinson's. Don't wait if your insurance will take care of it do it.

  • It's been 2 years since you posted this, are you still doing well and glad you had the DBS?

  • Yes , thanks for asking, I am working on getting my weight down, and started helping out at a small business close to my home!!

  • Yes , still doing well I did start meds back up. 3pills 5 Times a day, I have moved the volts up only two times in almost three years, I talk with my doctor on line if something comes up, I have not gone into office for PD all year . I will go in this Jan no meds, DBS turn off, and get the full work up done. Then I will turn DBS back on take meds and do it again, really not looking forward to that but I do understand the reasoning, I do find it interesting to see the difference of what I look like when everything is turned off and about one hour after everything is back in place.

    I truly hope that each and everyone of you has a great day, your friend with PD . Dan

  • I think you have answered your own question,Do you see conflicting advice instead of two potential options.Youve got the information no one can make the choice for you, perhaps follow your first instinct if you cant rationalise a decision,

  • Once the medication is no longer helping, you should consider the surgery. One thing you must make sure is that the symptoms you have are the symptoms DBS surgery will help. Talk to your movement specialist doctor about your concerns and be will guide you with advice. There are still some difference of opinion among the experts as to when exactly will DBS should be considered as a trea

  • Why are you waiting? I had DBS surgery in Jan 2011 and the first thing that I remember asking myself after surgery is "Why did I wait so long?"

    I too did not consider myself a candidate for surgery because I could still do my job. I had previously been a curriculum specialist who had recently been allowed to transfer to a new job as an elementary school librarian because I no longer felt like teaching workshops with my tremor was in the best interest of myself or the teachers that had to witness the shaking hand.

    This, however, did not ultimately help me make the decision to have the surgery. It wasn't until two of my daughters gave me grandsons within 6 weeks and I realized that I could not feed them. If I tried to hold the bottle with the shaking hand, I risked breaking their lips. If I tried holding the baby with the shaking arm, I risked given them a brain injury (shaken baby syndrome).

    I went back to work and finished the year (without a tremor) and retired in May.

  • I see you wrote this 2 years ago, how are you today. Are your PD symptoms still under control by the DBS?

  • Absolutely!! I waited 5-6 years too long and am lovin' life now!! Good Luck!

  • I try not to read other replies until I write my reply. DBS is and was a "giving my life back"surgery. However the 1st road I walk with was a different doctor & clinic, It didn't feel right I felt pushed and very loved. A year later the surgery was cancelled 20 min before my head was shaved, got dressed and was sent home. I was working full time seasonal meaning I had winter off. As my Parkinson worsened my insurance changed at work and forced me to doctor elsewhere, the clinic was a 2 1/2 hr drive but the best thing that ever happen to me. Fast forward to April 2012 successful DBS surgery, WHEN God slams a door he opens another else where. I was lucky I m not working now but because of COBRA rules for disability I kept my insurance as long as I was able to. The surgery was hard but worth it!! The effects were felt during the surgery my tautness in my arms let go just like some hard pushed a button (Yes--wide awake surgery for 9 hrs) I did be happy to talk with you I could write more but also know long post are hard to read and retain.

  • As usual I mis wrote I meant unloved at the first doctor & Clinic.

  • I'm afraid my swallowing problem would get worse.

  • now is the right time I had Dbs March of 2014. Don't let fear put off changing the quality of your life for the rest of your life.

  • Mars Venus has written some interesting things about using Lithium Orotate to slow down the disease, as for DBS there's a serious risk to Stroke and other issues, so I would think very carefully about that.

  • I went into Dbs last October, hoping to get my life back. I was an elementary school music teacher and loved my job. However the stress was killing me, and my pd symptoms were worsening. I was up to 7 sinemet a day and was experiencing many side effects. I was admitted to Boston-Scientific's Intrepid trial of their Vercise dbs implant. This week, I complete their required 4 months of testing and the device will finally be optimized for my needs. It's been a tough ordeal, a very long four months,but I already know this thing is as close to miraculous as possible. Even though I won't be going back to my full time job, I have every expectation that THIS is the best solution I could have found. Talk with your neurologist to see if your symptoms fit the Dbs profile. If they do, go for it! Yes, it's tough and there are very real risks, but the results are stunning. Oh yes, be sure to research the neurosurgeon to find how experienced he/she is in this procedure!

  • I see this was posted 2 years ago. What did you decide about DBS and how are you currently doing?

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