Quote:
Originally Posted by 2snowbells
Dear Laura;
Thank you for your reply, and yes, I had various brain scans done prior to the implant of the leads. Afterward, at the onset of the new developments, the neurologist ordered another scan to double check the placement of the leads and the neurosurgeon confirmed that they were located properly. As another member on this board suggested, I turned the neurostimulator completely off, and the neurologist even tried out different settings and along different paths on the leads to no avail. There were no changes at all. I hate to think that the leads caused the havoc. I should mention that I am one of those individuals that cannot tolerate Parkinson’s medications, of which I had tried seven (including various dosages) to date. About my “less bothersome symptoms besides tremor” prior to the DBS surgery? I should say it was constant tiredness, lack of concentration and energy.
Within a month’s time after the DBS, however, I developed other symptoms such as dry mouth, drooping eyelids, shuffling gait, dizziness, stiffness of the leg muscles, and extreme anxiety. Swallowing, too, has become somewhat difficult. Just to reiterate, the disease seems to have bypassed the benefits of DBS and progressed quickly. And, yes, Parkinson’s does have a mind of its own; every morning seems to bring a new surprise.
I am sorry to hear of your own condition; let’s hope that medical science will find a cure in our lifetime. Thanks again for your input and the attached link; much appreciated.
Best wishes,
Jerry
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Thank You for your post..And Im sorry to hear that you had such a terrible experience with DBS
I had been bouncing the idea of having it done, because I have a low tolerance for the many quirks of this illness..ie; dyskenisia, dystonia, off time, freezing, stuttering, urine retention during dyskinesia..The only drug that works for me is Stalevo 200 mgs, and I cant tolerate more than 3 doses per day, because the 4th dose is nothing but 1 - 3 hours of dyskinesia, and nothing else I do seems to help..It's like there is an imaginary barrier that I cant cross, and if I happen to find something/anything/suppliments etc, that helps, it seems like this disease goes on a seek and destroy mission, and within a few days, it eliminates any benefits I reap from whatever the substance/suppliment I was taking was providing
I have seen some miracles from DBS, and Ive seen trainwrecks too..There is a woman in my support group who, like yourself was sensitive to meds, and she had DBS done 4 years post dx, and the surgery failed..They claimed the leads were in the wrong place, so she had it re-done by another surgeon, and now she is worse than when she started, and still has to take meds that she cant tolerate
I witnessed Harley, who is a member of this group, get..( for lack of a better word ).. "electricuted" during programing..Not once, but twice during the same session..That was one of the most horrible things Ive ever seen happen to someone
Most of the people in my area have had complications of one sort or another after DBS surgery during the past couple of years
I decided to table the idea of getting the surgery for the time being, and even more so after reading your posts