I just want to share my thoughts about DBS. I’m going to be in absolute agony for 2 more weeks. My DBS equipment is implanted, but it can not be turned on for two weeks. My symptoms are now so painful and debilitating. It’s not funny. Awful painful constant dystonia! I started the process nine months ago. Got the testing. It took months and I did not push things because I was unsure so it took three months . Then I got a green light and made an appointment with the surgeon, but the appointment was delayed twice due to my home flooding twice in a row in 2 hurricanes. I am now homeless .
The surgeon worked me in as soon as he could. And that for took 4 more months Each step took a long time and each step of the way my symptoms got much worse. I can no longer walk without a walker. I’m in constant pain due to dystonia and I have kinds of other weird symptoms. CL still helps a little but it’s almost down to no good effect. None of the add on drugs helped me .
I fully expect to feel much better once they turn this thing on and my doctor told me that it should work well for at least 10 years if not more I’ll be able to travel and leave a normal life with any luck at all I deeply regret, dragging my feet at the beginning And urge everyone to look at the early rather than late. Will update this later!
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Gallowglass
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Thanks! I do believe that trials are gifts intended to make us stronger and all suffering can be offered .in reparation for sin and for the good of souls. But I sometimes fail to suffer as well as I’d like!
The programming can take time to work, so I would temper your expectations. Mine helped almost immediately, but then there were some setbacks which were very frustrating. I am four months post surgery and three months since programming began and I am very happy with the results. I, too, wish I would have done this two years ago and saved myself a lot of unnecessary suffering.
Hang in there, Gallowglass! Julie grace is right. Programming will take awhile to find your sweet spot! I am 2 1/2 years post DBS surgery. I had painful dystonia in my feet. I have not had feet cramping since! All glory to God! DBS won’t heal us. This insidious disease keeps progressing. But DBS certainly helps some of the symptoms..
Hi Gallowglass. I agree. We all worry about taking a next step forward where everything we read or hear about makes that step seems ominous. Taking the medications, we concentrate on the negative side effects, and surgeries, we look for those examples that have gone wrong.I delayed taking sinemet for two years, and regretted it. Ive had the side effects but they have still given me 6 years with some normality. I didn't aim to delay DBS but didn't realise that it can take up to 2 years to go from request to surgery, in yhe UK at least. I've yet to see what the medium term effects will be but the surgery went smoothly and initial results look promising.
If you can access medical help do it. Don't delay.
thanks! That’s exactly my point. Because it takes so long to get the surgery just start the inquiry asap . Inquiring does not require a commitment. Nor does testing, nor does meeting the surgeon, or even scheduling the surgery ! We learn much during the process! When the time comes to commit we will be ready . But if we wait too long…we may not qualify
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