What is it like after DBS?
One person's experience:
I am a 10 year veteran of bi-lateral DBS and have had the same symptoms when drinking, having a dry cough and a tightness in the throat interfering with enunciation and in general sounding like a drunk.
I know what frustration you have trying to be understood and raising the voice in some cultures is an affront. Even family understand this frustration of me shouting (their interpretation) and occasional folks like store clerks avoid me.
Number 1. After my trip to San Francisco for stimulator replacement and reprogramming I frequently choke on drinks, tiredness brings on frustration by trying to be understood and speech appears drunken.
For years I found I could cope by turning off the right chest stimulator. Depending on which side is most disabled would determine which stimulator to turn off. If you have to make a public speech, turn off the offending stimulator and put the shaking hand in your pocket. My right stimulator controls the left hand which I use to write. I just don't write when I feel I may be called on for interaction.
Number 2. There is crosstalk in the halves of the brain that cause head tremor and tightening of the vocal cords and the throat. By turning off the contralateral unit, you regain normal voice volume and your diction will be restored. Chances are that your head shake will not be noticeable if you have either the yes-yes or no-no type.
So far several programmers have not been able to discover a program combination that will alleviate these quirks and most of the time do not recognize the symptomatic unintended consequences of over programming. Your primary care doctor should be alerted that you are a hybrid patient and to not attempt to treat parts of the body that are prone to paranthesias from the devices. Case in point is I came down with a virus which involved mucous and hard coughing in which I could not stop long enough to bet my breath. Antibiotics cured the biological part but the coughing prevailed. At that time my stimulators where on 24/7. I turned the right stimulator off and the coughing and choking disappeared.
Number 3. If your stimulators are programmed to produce a high voltage in order to control your symptoms, you will eat up stimulators in short order. Here in the Philippines they cost about $20,000 each which might sound cheap compared to the hospital billing medicare pays. U.S. medicare is not accepted here. Higher stimulator settings lead to more side effects and shorter life.
One person's experience:
I am a 10 year veteran of bi-lateral DBS and have had the same symptoms when drinking, having a dry cough and a tightness in the throat interfering with enunciation and in general sounding like a drunk.
I know what frustration you have trying to be understood and raising the voice in some cultures is an affront. Even family understand this frustration of me shouting (their interpretation) and occasional folks like store clerks avoid me.
Number 1. After my trip to San Francisco for stimulator replacement and reprogramming I frequently choke on drinks, tiredness brings on frustration by trying to be understood and speech appears drunken.
For years I found I could cope by turning off the right chest stimulator. Depending on which side is most disabled would determine which stimulator to turn off. If you have to make a public speech, turn off the offending stimulator and put the shaking hand in your pocket. My right stimulator controls the left hand which I use to write. I just don't write when I feel I may be called on for interaction.
Number 2. There is crosstalk in the halves of the brain that cause head tremor and tightening of the vocal cords and the throat. By turning off the contralateral unit, you regain normal voice volume and your diction will be restored. Chances are that your head shake will not be noticeable if you have either the yes-yes or no-no type.
So far several programmers have not been able to discover a program combination that will alleviate these quirks and most of the time do not recognize the symptomatic unintended consequences of over programming. Your primary care doctor should be alerted that you are a hybrid patient and to not attempt to treat parts of the body that are prone to paranthesias from the devices. Case in point is I came down with a virus which involved mucous and hard coughing in which I could not stop long enough to bet my breath. Antibiotics cured the biological part but the coughing prevailed. At that time my stimulators where on 24/7. I turned the right stimulator off and the coughing and choking disappeared.
Number 3. If your stimulators are programmed to produce a high voltage in order to control your symptoms, you will eat up stimulators in short order. Here in the Philippines they cost about $20,000 each which might sound cheap compared to the hospital billing medicare pays. U.S. medicare is not accepted here. Higher stimulator settings lead to more side effects and shorter life.