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Dear doctor, 

Until now the medical literature as far as I can see does not clearly define the functions that are restored or worsened or left as they are by the DBS. To make it more clear we know ıt suppresses tremor and rigidity in the joints and involuntary movements by decreasing the daily intake of medication. but does it influence in positive or negative sense the symptoms such as cheek biting, drooling, eating the tong, dry eyes, dry mouth, slurred speech, loss of short term memory, not being able to find the words to speak, weak voice, loss of balance, weaker muscles, urological problems, nightmares and probably many others that do not come to my mind now. I personally think that most of these symptoms are negatively affected by DBS. Am I right?

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The symptoms you list are usually not improved by DBS and some can possibly be worsened.  What we do is see the patients for 2 days and multiple specialists and we do a complete evaluation, set expectations, and also discuss the individual case and target.  In many cases medications will not be reduced.  Tremor, dyskinesia, and on-off fluctuations have the greatest and most noticeable benefits but other symptoms may also improve.

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As a continuation to this discussion, considering the inevitable progress of the disease in how many months or years can the patient  exploit the  full capacity of the DBS?  As time goes by is it necessary  to change the simulation parameters  such as the voltage or the current in order to suppress the tremor? Apart from the physical limit of the device which is typically about 10 mv, are there other limits to be respected?  Should such a decision be taken solely by the programmer and/or by the neurosurgeon or in consultation with the patient.?

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Here are my thoughts.

The patient is the sun and we revolve around the patient.  I believe always involve everyone but especially the patient in decisions.

The DBS always works but the disease progresses and walking, talking and thinking become the main challenges in many cases.

After 4-6 months there is not much utility in continuing detailed programming.  Pick the best setting and monitor but focus on meds and therapies.

The limits depend on the patient.

I really hope you do well and I wish you well on the journey.

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