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coacht

Voice weakness

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coacht    95

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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coacht    95

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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TexasTom    706

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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Mizsmitty    1

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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waruna01    44

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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noah    66

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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Mizsmitty    1
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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MurrayPD2    219

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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coacht    95

The neurologist decreased the bandwidth to try and help her speech last time. That was two weeks ago and her speech is slightly better. I don't have to ask her to repeat as much now.

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waruna01    44
6 hours ago, coacht said:

The neurologist decreased the bandwidth to try and help her speech last time. That was two weeks ago and her speech is slightly better. I don't have to ask her to repeat as much now.

Keep bandwidth between 100-130 range. Don't exceed 130 unless she got major tremors. If she is one of the lucky few who can keep tremors under control between 60-90 range, all the better. Most can't but it's good to try these se for few weeks to see if she can use them. Experiment with new settings. Patient programmer allows the doctor to give 4 different settings per each visit. Keep pulse width close to 60

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coacht    95

Our neurologist doesn't give us any options other than what is done at the visit. I wouldn't trust my wife to do any adjusting with her cognitive decline. She is still working, but her judgement and understanding of new things is not good. Also, she has had no tremors since the surgery at all, her main problem is dystonia at this point.

 

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otolorin    28

Hi everyone,

I thought DBS is supposed to help with all motor symptoms,I will appreciate your response.I have not done this,just weighing my options.

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coacht    95
19 hours ago, otolorin said:

Hi everyone,

I thought DBS is supposed to help with all motor symptoms,I will appreciate your response.I have not done this,just weighing my options.

It does work, but there are tradeoffs. Different locations are used for the placement of the DBS depending upon what a person's main problems are, example STN (Subthalmic Nucleus) vs GPI (Globus Pallidus). I can't remember which one is better for tremors and which is better for dystonia. Voice and cognition are affected in many people that have DBS. My DW's cognition improved actually at first due to the removal of so many drugs and their side effects. It was almost two years after the surgery before her voice started being a problem, so is it due to the DBS and the increasing levels, the progression of the disease, or both? I think she would be in a wheelchair by now if it was not for the surgery. She is still working part time and driving, so for her it has overall been nothing but good. Her symptoms started in 2001 and she  is now 52. I think this next year will be her last year working due to a number of things, mostly progression with the increasing symptoms. They said she has had the optimum results of the surgery. Another man in our small town had the surgery and you can't tell anything is wrong with him and he could not tolerate any of the meds. He is in his late 70s. Another man had just terrible results and used the same surgeon as my DW. You just have to weight the pro and con of the whole surgery. I am sure others have more opinions.

Coach T

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otolorin    28

Coacht,

thanks for your insight,very encouraging.Still on medication,but scared of terrible side effects.Diagnosed approximately 2yrs ago..

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otolorin    28

Coacht,

I am sorry that your DW will have to stop work after next year.How come she has reached the optimal result of the surgery?How many years is DBS supposed to be effective?How long has your DW had it?

 

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waruna01    44

Don't do dbs until your PD has substantially affected your quality of life. DBS has major trade offs despite all the marketing you see online. If you can still function without DBS, it may be worthwhile to hold off 

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waruna01    44
1 hour ago, otolorin said:

Coacht,

I am sorry that your DW will have to stop work after next year.How come she has reached the optimal result of the surgery?How many years is DBS supposed to be effective?How long has your DW had it?

 

It takes years of trial and error programming to come to optimum results 

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MurrayPD2    219
10 hours ago, waruna01 said:

Don't do dbs until your PD has substantially affected your quality of life. DBS has major trade offs despite all the marketing you see online. If you can still function without DBS, it may be worthwhile to hold off 

There is an optimum window if you take the "hold off" approach, you may wait too long and you may not qualify or benefit as much.  If you wait until you are desperate, then it could be too late. 

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coacht    95
On 6/4/2017 at 9:29 PM, otolorin said:

Coacht,

I am sorry that your DW will have to stop work after next year.How come she has reached the optimal result of the surgery?How many years is DBS supposed to be effective?How long has your DW had it?

 

She has had physical symptoms since 2001. I think quitting work will be a combination of several things, her voice, fatigue, walking, falling, her judgement, executive function, etc.  The reason she had the optimum result is she took no medication except her anti-anxiety meds after the surgery and she gained in my estimation seven years physically. I am a veterinarian so I am used to looking for things like that, drives her crazy. Gradually sinemet was added back. and she is still at the same level. A lot of her issues started after she slipped in the snow a year and a half ago and broke her ankle. That set her back physically by quite a bit. It was optimum in that she had no complications, her meds were greatly decreased, she had no tremor whatsoever and still doesn't, her dystonia was gone,  (it has come back slightly now), her cognition improved actually since she was off of several meds. In the last year her executive function has gotten worse, her dystonia is back somewhat, but nothing even close to where it was and tweaks to the programming take care of it for now. She is a much nicer person off of the meds  than she was on them. I guess, what more can you ask for as it is chronically progressive.

 

She did tell me of someone else in town that just had the surgery and had infection so the battery and leads had to be removed. Lots of PD here I guess. Three people on our short street at one time.

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otolorin    28

Coacht,

so, would you say she beneffited more from DBS than from medications?How long was she on PD medications and what symptoms did she present before DBS surgery?

Edited by otolorin

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coacht    95
2 hours ago, otolorin said:

Coacht,

so, would you say she beneffited more from DBS than from medications?How long was she on PD medications and what symptoms did she present before DBS surgery?

She definitely benefited more from the DBS than the medications. I am not saying that all will though. The side effects of the agonists was awful and was a really stressful period. The neurologist just cared about physical symptoms and the cognitive and behavioral ones were ignored and she wasn't aware of them. The other meds also had side effects that were not so good, plus her dystonia was getting worse and worse. She could not get by on just the DBS alone so the DBS and meds are complementary to each other. It is not an either or situation. I do think the DBS has extended her life due to the fact she would probably not be mobile now or in a short period the way her dystonia was progressing. Hope that helps.

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