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coacht

Voice weakness

9 posts in this topic

Hello all,

 

Question for all that have had DBS. Was your voice weaker after the surgery or not? Secondly, did it become weaker later? My DW took the LVST training last August and it helped for a few months, she forgets to do the daily exercises. Two years after DBS, her voice has become softer, slower and she slurs her words a lot. Just wondering if it is because of the surgery or is just disease progression. I don't know how long she will continue to work if she can't be heard.

 

Coach T

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Hers was actually better at first. I know that most get worse. It has been relatively sudden as to how fast it changed.

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Bring it up with her MDS at the next appointment to see if setting changes or medication should be changed.

Since I had DBS, I can nibble on Mexican Restaraunt favorite chips and salsa! I had given them up as I would often gag and start choking on them.

Hmm, maybe that is why my wait weight is slowly coming back up. (about 5# since surgery)

Edited by TexasTom
slipping words. I do not believe I wrote "wait" and not "weight" sigh
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I have struggled with speech since dbs, including slurring & weak voice.  This was not a problem prior to dbs.  I discussed this with the neurologist who made adjustments which did help but speech is still a problem.

 

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DBS can take a big toll on speech and swalloing especially STN two lead DBS instead of just one. Most PD patients need only one lead but most DBS centers arbitrarily put two leads on the same visit. Less is better with DBS. It may be wise to have one lead and wait few years to judge if you need the other one as well and if its worth the trade off. That is how they do it at UF medical center under Dr Okuns group. Once the the lead is inserted, it will have irreversible effects even if the lead is later removed. So never rush into DBS thinking it will solve all PD problems and it does have big trade offs.  Speech, swallowing and balance can be one of them. Go see an expert programmer like Sierra Farris in Colorado if you continue to have speech issues post DBS.Bipolar settings, low frequency 100-130 hertz, settings and low pulse width 60 settings can help speech. Also, MRI scan might help to check lead location to see if suboptimal leads are turned on. These may help to lessen speech side effects. you only realize who valuable your speech is after losing it. you could end up being depressed after DBS if you lose your ability to speek as it affects your social life to interact with people. So think well before you jump into DBS to make sure the trade off is worth it. If you decide to do DBS, it may be wise to do 1 side at a time. You may not need the other side which may end up saving  your speech. Two leads can increase speech side effects. Having DBS is like living with a another person in your body that you can't get rid of once implanted whether you like it or not. They say the surgery is reversible which is technically not true as lead removal can lead to permanent side effects from bleeding and strokes. So weigh these options before DBS. It does have some bad side effects that you may not expect 

Edited by waruna01
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I guess it is a matter of c hoice.  Before i had DBS I could barely walk.  Since dbs I can walk 4 miles.  But  my xspeech has been effected.  I guess its a trade off

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On 5/3/2017 at 8:30 PM, waruna01 said:

DBS can take a big toll on speech and swalloing especially STN two lead DBS instead of just one. Most PD patients need only one lead but most DBS centers arbitrarily put two leads on the same visit. Less is better with DBS. It may be wise to have one lead and wait few years to judge if you need the other one as well and if its worth the trade off. So never rush into DBS thinking it will solve all PD problems and it does have big trade offs. Speech can balance can be one of them. Go see an expert programmer like Sierra Farris in Colorado if you continue to have speech issues post DBS.Bipolar settings, low frequency 100-130 hertz, settings and low pulse width 60 settings can help speech. Also, MRI scan might help to check lead location to see if suboptimal leads are turned on. These may help to lessen speech side effects. you only realize who valuable your speech is after losing it. you could end up being depressed after DBS if you lose your ability to speek as it affects your social life. So think well before you jump into DBS to make sure the trade off is worth it. If you decide to do DBS, it may be wise to do 1 side at a time. You may not need the other side which can save your speech. Two leads can increase speech side effects.

You seem to be very knowledgeable on this, I truly thought I researched prior to DBS surgery but clearly there is much more to know than l understood. I have STN even though my symptoms are almost all on one side.  Do you know if there is any benefit to turning off the stimulator on the side that was/is not so affected?

 

 

 

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I had no speech issues, but I only had it for a few days.  Got infected and now it is gone.    I do have a chance in trying it again. 

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