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coacht

Voice weakness

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otolorin    30

Coacht,

I couldn't cope with the agonists too.You have greatly helped me with your insights.My prayers and regards to your DW.

Thanks.

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waruna01    52
On 6/5/2017 at 7:28 PM, MurrayPD2 said:

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. 

My experience is if you have to sacrifice your voice to gain a benefit from dbs as with most dbs patients, think very very carefully if the trade off is worth it. Once you lose your ability to communicate with people properly, it can lead to depression as you will have to hold off your emotions without expressing them to others. Other people will also stop talking with you as they can't understand what you are saying properly. This is the worse part. You will feel isolated as you are living in a bubble.

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MurrayPD2    219

I couldn't handle agonists and I had a DBS infection, so I have been down those roads.   Everybody comments how rare an infection is and only %20  have serious agonist problems.  I also had a CSF leak on spinal surgery and that is rare, so I am batting 1000 on the worst experiences, but I still have a positive DBS outlook.  Those few hours DBS was working  (just before I found out I had an infection)  was great!  I felt close to "normal" again.

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janvier    4
On 5/4/2017 at 3:30 AM, 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. 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 

I find this information to be quite important. The numbers given for speech frequency < 130, pulse width =60, bipolar stimulation do they have any impact on the tremor which is the main purpose of the DBS apart from a few other positive effects. As far as I know it is used in most cases and involves two electrodes out of four namely 0,1,2, and 3. These are coupled one being positive and the other negative. So I assume if 130 and 60 are used this will affect the amplitude requiring more energy in terms of miliampers decreasing the life of the battery. Depending on the case it may or may not be worthwhile. In any case you are quite knowledgeable in the subject. After a certain point we  at least have to know a little bit about the technology of DBS. Otherwise we are at the mercy of Neurologists and Neurosurgeons, who either do not tell us the whole story or they themselves do not really understand neither the technology nor the implications.

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waruna01    52

High frequency over 130 ( I prefer 100 if it keeps tremors under control, 130 is still okay not too high) and high pulse over 60-90 ( prefer 60) width and high voltages are needed if your tremors are not controlled properly but it will also cause tightening of muscles in your throat which can cause speech and swallowing and freezing  issues. So it's best to keep everything below above mention limits to avoid side effects. Mono polar settings (-) also very good at keeping tremors under control but can lead to speech and swallowing issues. Bi polar (-+) settings is a good option to try if you have side effects. Low frequency, bi polar settings, low pulse width and low voltages are key to reducing side effects and will also extend your battery life substantially close to 8 + years. Reducing one parameter may need compensating from another. E.g. You can go with a higher voltage if you keep frequncy low under 100. It will even out battery wear since low frequency reduces battery usage) It's about finding the right balance while keep all these parameters low as possible which can extend battery life and reduce side effects .Also, medtronic patient programmer allows changing of frequency. So you can ask your programmer to,give you that option. So you can experiment on your own. Be sure to use your groups in your programmer to try new settings until find the perfect one which may take several years of trial and error programming. Be precistent about programming.  Most important thing is to select proper electrodes. So be sure to see an expert programmer like Sierra Farris in Colorado or Pam at UF Florida if you not satisfied with dbs results. I still believe dbs should be the last resort as dbs will likely give you new set of problems to deal with and to,understand it's mechanism is not easy and you will be at mercy of your programmer and neurologist after surgery  who will likely blame any post dbs problems to disease progression. You lose you independence after surgery in a way as you have to constantly reach out programmer for more new settings if you are not satisfied with them.You can't undo this surgery. You are stuck with it for life despite what they call as reversible. speech side effects are the most notorious side effects that is very difficult to correct post dbs

Edited by waruna01

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polyparkie    10

I've had my DBS since '14, and yes, I've experienced voice/speaking issues, so I went through the LSVT treatment last Jan. and it seems to have worked well. I don't suppose it will last forever, but I'll go with it today..... and yes, I'd do it all again..... 

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janvier    4

Polyparkie you said voice therapy helps. Thanks for the tip. I'll go with it. Can you tell me how many sessions you had with the specialist and are you still practicing at home. How much time has gone by since you finished the last session assuming that you are still OK.

Waruna01 again the info you have given is very important. Since my DBS I am also having nightmares and hallucinations. Is DBS the culprit and if yes will the low frequency help? Thanks. 

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waruna01    52
15 hours ago, janvier said:

Polyparkie you said voice therapy helps. Thanks for the tip. I'll go with it. Can you tell me how many sessions you had with the specialist and are you still practicing at home. How much time has gone by since you finished the last session assuming that you are still OK.

Waruna01 again the info you have given is very important. Since my DBS I am also having nightmares and hallucinations. Is DBS the culprit and if yes will the low frequency help? Thanks. 

No. If you are having nightmares and hallucinations it's very likely they have turned ON and electrode that is outside STN target. Each lead have 4 electrodes on each side and usually only 1 or 2 electrodes are well positioned in STN as it is a very small region in brain about the size of a rice grain. All 4 electrodes want fit within STN. Usually good surgeons can at least place 2 electrodes within STN. Same for GPI. Sometimes none are well placed and will likely need revision dbs surgery which should only be done at a expert center that handle revision surgeries. You likely need a MRI scan to check lead location and find out what electrodes are well placed anatomically in STN and usually these are electrodes that should be used for stimulation. If others are used, electric current will spread to other areas of the brain and can lead to depression and hallucinations and other side effects. Bi polar settings can also be used to drag and contain the elctrical current into the proper area of the brain as a last resort but it is still dependent upon how well lead were initially placed. Monopolar (- cathode) provides  more benefits in terms of stimulation but can lead to side effects since there is no anode + to contain the current in the brain. Current stream travels from cathode - to anode+. Basically your whole brain acts as anode in monopolar- settings which will spread electrical stimulation into unwanted regions of the brain if leads are not properly placed. I recommend you,go see someone like Sierra Farris in Denver as you may need expert care and it's always worth it to get a second opinion about your dbs settings instead of relying just one programmer. There's a book called patient guide to dbs on Amazon. You can learn a lot about dbs. 

Edited by waruna01

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janvier    4

Yes Waruna01 in fact to stop my involuntary movements on the left side the current there was reduced down to 0.1 mili ampers and eventually the Neurosurgeon changed the electrodes (0, 1, 2, 3)  from 01-02 to  -02 +03  which as he put it is hitting beside the target but reducing the involuntary movement to a tolerable level.  So this may be the reason for the hallucinations and bad dreams. I am currently assembling  all this info and after a discussion with my neurologist next week I will start having a revision of of my settings with a different programming team. As I am residing in Europe it is not easy task to go and see a programmer in the USA and stay at least a month to get results. However if it is worth the journey I'll do it. Apart from Sierra Faris is there anyone else that you can recommend. Thanks.

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coacht    95
18 hours ago, janvier said:

Polyparkie you said voice therapy helps. Thanks for the tip. I'll go with it. Can you tell me how many sessions you had with the specialist and are you still practicing at home. How much time has gone by since you finished the last session assuming that you are still OK.

Waruna01 again the info you have given is very important. Since my DBS I am also having nightmares and hallucinations. Is DBS the culprit and if yes will the low frequency help? Thanks. 

My wife did the LSVT a year ago and doesn't do her daily exercises and you can tell. It is a long term therapy that needs to be done regularly, not just the initial training. Hope it works for you, it did for my wife when she did it.

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janvier    4

That is good news. When you say works well does it mean that her voice got back to normal and  articulation also became normal? Thanks coacht.

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waruna01    52
5 hours ago, janvier said:

Yes Waruna01 in fact to stop my involuntary movements on the left side the current there was reduced down to 0.1 mili ampers and eventually the Neurosurgeon changed the electrodes (0, 1, 2, 3)  from 01-02 to  -02 +03  which as he put it is hitting beside the target but reducing the involuntary movement to a tolerable level.  So this may be the reason for the hallucinations and bad dreams. I am currently assembling  all this info and after a discussion with my neurologist next week I will start having a revision of of my settings with a different programming team. As I am residing in Europe it is not easy task to go and see a programmer in the USA and stay at least a month to get results. However if it is worth the journey I'll do it. Apart from Sierra Faris is there anyone else that you can recommend. Thanks.

I flew my dad from Asia to Denver to see Sierra and Pam at Florida and it was well worth it. You will likely need about 10 days of stay and will likely cost around $4000-5000. You will likely have to pay out of pocket. I recommend Sierra for complex DBS issues. Pam at Florida is good too and might be closer but they have long waits times for new patients. I recommend you get CT scan along with your initial pre-dbs MRI so they can tell you if they can help you or not. If you can get a post DBS MRI from Europe it's even better than a CT but you need special low 1.5 Tesla MRI machine capable of imaging people with implanted devices. Not sure if you can find one in Europe. They can't do much if leads are suboptimally placed.

Edited by waruna01

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janvier    4
3 hours ago, waruna01 said:

I flew my dad from Asia to Denver to see Sierra and Pam at Florida and it was well worth it. You will likely need about 10 days of stay and will likely cost around $4000-5000. You will likely have to pay out of pocket. I recommend Sierra for complex DBS issues. Pam at Florida is good too and might be closer but they have long waits times for new patients. I recommend you get CT scan along with your initial pre-dbs MRI so they can tell you if they can help you or not. If you can get a post DBS MRI from Europe it's even better than a CT but you need special low 1.5 Tesla MRI machine capable of imaging people with implanted devices. Not sure if you can find one in Europe. They can't do much if leads are suboptimally placed.

Thanks for all that info waruna01. As I said at the moment I am browsing the internet to find as much info as possible for my upcoming programming sessions. If problems persist I shall seriously consider that option.  Thanks again.

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waruna01    52
6 hours ago, janvier said:

Thanks for all that info waruna01. As I said at the moment I am browsing the internet to find as much info as possible for my upcoming programming sessions. If problems persist I shall seriously consider that option.  Thanks again.

Programming is an art. Only a skilled technician with years of experience  can do it right. There is no one setting that works for all people. 

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janvier    4
6 hours ago, waruna01 said:

Programming is an art. Only a skilled technician with years of experience  can do it right. There is no one setting that works for all people. 

Quite right waruna, being an IT expert  I can't agree more. The books "the Mythical Man-Month' and "Programming Art", I don't know whether you have seen them, illustrate this fact although a large party of the public think it's a science or some kind of magic only known by the high priests of technology. 

Edited by janvier
typo kind instead of king

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waruna01    52
On 8/5/2017 at 4:34 PM, janvier said:

Yes Waruna01 in fact to stop my involuntary movements on the left side the current there was reduced down to 0.1 mili ampers and eventually the Neurosurgeon changed the electrodes (0, 1, 2, 3)  from 01-02 to  -02 +03  which as he put it is hitting beside the target but reducing the involuntary movement to a tolerable level.  So this may be the reason for the hallucinations and bad dreams. I am currently assembling  all this info and after a discussion with my neurologist next week I will start having a revision of of my settings with a different programming team. As I am residing in Europe it is not easy task to go and see a programmer in the USA and stay at least a month to get results. However if it is worth the journey I'll do it. Apart from Sierra Faris is there anyone else that you can recommend. Thanks.

I would ask for CT scan to confirm if electrode 1 2 3 are in deed within range of STN. They may be off. Have they tested monopolar settings with just one electrode (e.g. -02)? ideally your team should check high and low theresolds for each 4 electrodes and find the one that provides maximum benefit. Bi polar don't work well for all patients and may end up making things worse.

 CT scan or post DBS MRI can further validate this and will give you an assurance that your surgery was done right. If your involuntary movements are dbs induced, they should dial back stimulation but normally dbs induced involuntary movements susbside after few months from surgery once your brain gets adapted so don't panic just yet. 

Also, if you are hullucinating, you may be taking too many meds. You normally only need Sinemet (Levadopa) after dbs and you may want to stop any other dopamine meds such as Requip, azilect etc. sinemet dose also gets 60-70% reduction from post dbs dose per day. Ask dr okun about any meds post dbs if you have any questions 

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janvier    4
3 hours ago, waruna01 said:

I would ask for CT scan to confirm if electrode 1 2 3 are in deed within range of STN. They may be off. Have they tested monopolar settings with just one electrode (e.g. -02)? ideally your team should check high and low theresolds for each 4 electrodes and find the one that provides maximum benefit. Bi polar don't work well for all patients and may end up making things worse.

 CT scan or post DBS MRI can further validate this and will give you an assurance that your surgery was done right. If your involuntary movements are dbs induced, they should dial back stimulation but normally dbs induced involuntary movements susbside after few months from surgery once your brain gets adapted so don't panic just yet. 

Also, if you are hullucinating, you may be taking too many meds. You normally only need Sinemet (Levadopa) after dbs and you may want to stop any other dopamine meds such as Requip, azilect etc. sinemet dose also gets 60-70% reduction from post dbs dose per day. Ask dr okun about any meds post dbs if you have any questions 

Thanks Waruna01 for the info. The meds are drastically reduced after DBS. Currently the daily intake is Myrapex(Pramipexol) 1.5 mg, Azilect 1.0 mg, Amantadine 50 mg, Inderal 2 x 1.I am not taking any dopamine. I have observed something bizarre, my involuntary movement in the left leg seems to have evolved into tremor.  I wonder whether  anyone else has observed such a case.

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waruna01    52

Normally people only take plain Sinemet carbidopa/Levadopa post dbs. DBS need Sinemet in order to work properly. They work in unison so you should not discontinue it. Your brain needs dopamine. Dbs can't substitute meds. You are taking several dopamine agonists which is known to induce hullucinations.  Your complex cocktail of meds post dbs and might be partly to blame. Discuss with your doc about this. Ask Dr ok un in this forum about your meds post dbs. your dbs settings may need further adjustments 

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janvier    4

I wish to contribute to the discussion. I had my first DBS in 2006 and second in 2013. The first was unilateral VIM and the second bilateral STN. So practically speaking I have an experience of 11 years. In both cases Let side in the first and Right side in the second case I came to a point that I could not work anymore. My life became miserable because of unstoppable tremors. I had reached almost the ceiling of daily intake of Levodopa.and Requip with of course all kinds of side effects and at that point I had to decide either continue suffering with disease getting worse and worse or to be liberated from tremor in half a day. I agree with what Waruna01 has been saying that is less is better both for medicine intake and low pulse width, frequency and current. Yes there are some side effects such as weak voice. But think of the case where you are tied in an armchair shaking continuously and not able to drink or eat anything without help. The result is you go for the DBS even if you know what may happen as a side effect.  So the crucial question is when to go for it. I'll give you 3 criteria: If you can not work anymore, if for daily living tasks you have to rely on other people and if you are young enough to  support the brain surgery. Every solution has plusses and minuses. You have to compare them and make the decision yourself. In principle if the doctor after a medicine loading test can decide whether you will profit from DBS. After some general tests they can tell you whether you can support  the surgery. Then the rest is your decision. In the past ie 2006 a unilateral VIM took about 6 to 8 hours to complete with tunneling the leads under full anesthesia and so on. Now a bilateral STN takes about 3 hours.  Just to give you an idea of the huge technical development. At the hospital I have seen  people brought in armchairs and seen the same people walking out with a regular pace. So good luck.

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MurrayPD2    219
15 hours ago, waruna01 said:

Normally people only take plain Sinemet carbidopa/Levadopa post dbs. DBS need Sinemet in order to work properly. They work in unison so you should not discontinue it. Your brain needs dopamine. Dbs can't substitute meds. You are taking several dopamine agonists which is known to induce hullucinations.  Your complex cocktail of meds post dbs and might be partly to blame. Discuss with your doc about this. Ask Dr ok un in this forum about your meds post dbs. your dbs settings may need further adjustments 

The DBS does not "need" Sinemet.  DNS does not replace the medication, but I know 2 people I met in person who no longer take PD meds because their DBS was so successful.  It is more likely someone will need some lower dosage of medication as things are fine tuned. Or, it could treat what the medicine was no longer effective  for.  However, they say if Sinemet is no longer effective, it is too late to get a DBS.   I am going to get my mine re-installed in about 3 weeks

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MurrayPD2    219
41 minutes ago, janvier said:

I wish to contribute to the discussion. I had my first DBS in 2006 and second in 2013. The first was unilateral VIM and the second bilateral STN. So practically speaking I have an experience of 11 years. In both cases Let side in the first and Right side in the second case I came to a point that I could not work anymore. My life became miserable because of unstoppable tremors. I had reached almost the ceiling of daily intake of Levodopa.and Requip with of course all kinds of side effects and at that point I had to decide either continue suffering with disease getting worse and worse or to be liberated from tremor in half a day. I agree with what Waruna01 has been saying that is less is better both for medicine intake and low pulse width, frequency and current. Yes there are some side effects such as weak voice. But think of the case where you are tied in an armchair shaking continuously and not able to drink or eat anything without help. The result is you go for the DBS even if you know what may happen as a side effect.  So the crucial question is when to go for it. I'll give you 3 criteria: If you can not work anymore, if for daily living tasks you have to rely on other people and if you are young enough to  support the brain surgery. Every solution has plusses and minuses. You have to compare them and make the decision yourself. In principle if the doctor after a medicine loading test can decide whether you will profit from DBS. After some general tests they can tell you whether you can support  the surgery. Then the rest is your decision. In the past ie 2006 a unilateral VIM took about 6 to 8 hours to complete with tunneling the leads under full anesthesia and so on. Now a bilateral STN takes about 3 hours.  Just to give you an idea of the huge technical development. At the hospital I have seen  people brought in armchairs and seen the same people walking out with a regular pace. So good luck.

I have am willing to get mine re-installed for better QOL.  I did change my diet also.  I already feel better.  Just another tool to keep the PD from slowing me down.

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janvier    4
12 hours ago, MurrayPD2 said:

I have am willing to get mine re-installed for better QOL.  I did change my diet also.  I already feel better.  Just another tool to keep the PD from slowing me down.

You said diet. What kind of a diet is that. Could you be more precise?

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coacht    95
On 8/5/2017 at 9:35 AM, janvier said:

That is good news. When you say works well does it mean that her voice got back to normal and  articulation also became normal? Thanks coacht.

it was relatively normal. She did not seem to know how loud she was and was quite loud for example when we were eating. She did not continue the exercises and within a few months her voice levels started deteriorating. They improve somewhat for a short time if she does them.

 

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MurrayPD2    219
13 hours ago, janvier said:

You said diet. What kind of a diet is that. Could you be more precise?

For me, I discovered that taking out lactose (completely) and reducing gluten has boosted my mood and lessened the PD symptoms some.  I am also trying to include blueberries and grape (anti-oxidant fruits) I just started following this strictly the last two weeks, but I am already noticing.  Also, a lot less processed foods, but mostly cooked foods and vegetables.

 

I found out, from donating my DNA to 23andme, that I have a lactose intolerance.  So, some of this is making sense. I use coconut milk for anything requiring milk.

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coacht    95

Interestingly, at the appointment with the neurologist this week, my wife's voice was the best it had been in over a year. Just two day before one of our son's texted me and wondered why she sounded drunk.

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