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DBS - the good, the bad, and the ugly

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Old 09-14-2018, 06:46 PM   #1
proudest_mama
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Default DBS - the good, the bad, and the ugly

I was dx with PD 15 years ago at the age of 43. For the first 15 years I was only on Mirapex and Artane, both considered "agonist" drugs. I added Carbidopa/Levidopa about 5 years ago.

I'm seriously considering DBS, but before I do, I want to seriously look into all aspects of that surgery. The example I give is this ... Before ordering something from Amazon, I read the one star comments first. In other words, I want to know people's BAD experiences and what COULD go wrong. It's easy to concentrate on only the positive comments ... but I find I'm much more informed if I research the bad comments as well.

I sincerely appreciate any and all comments.

Thanks ...
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Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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eds195 (09-17-2018)
Old 09-15-2018, 01:35 PM   #2
proudest_mama
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Default a good sign?

Well, maybe this is a good sign ... no one has posted anything negative!

If anyone else has had DBS and is happy with the results, can you share that with me as well?

Amy information and insight you can provide would be appreciated.
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People will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 09-17-2018, 12:18 AM   #3
Canna
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Originally Posted by proudest_mama View Post
Well, maybe this is a good sign ... no one has posted anything negative!

If anyone else has had DBS and is happy with the results, can you share that with me as well?

Amy information and insight you can provide would be appreciated.
I had it in June. The surgery part was easy physically. I had some volatile mood swings for about a month after. My programming is not optimized yet and that is frustrating but still. I am more coordinated, thinking and planning better and more independent than I was before I had it.

The surgery is completed in such a short period of time and there is so much emphasis on that part. If you read the info carefully, you will find that it may take six months or more to get a good stimulator and meds combination. If you have other specific questions. I'll give it a go.
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Old 09-17-2018, 02:50 PM   #4
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I had it in June. The surgery part was easy physically. I had some volatile mood swings for about a month after. My programming is not optimized yet and that is frustrating but still. I am more coordinated, thinking and planning better and more independent than I was before I had it.

The surgery is completed in such a short period of time and there is so much emphasis on that part. If you read the info carefully, you will find that it may take six months or more to get a good stimulator and meds combination. If you have other specific questions. I'll give it a go.
I had DBS surgery 2 years ago and am so glad I did. I was able to reduce/eliminate my right sided tremor. Yeah! I think the DBS voltage affects my speech a little but not enough to matter. My Surgeon is one of the best in the US and the surgery was no big event, kinda fun in fact. Talking with the Doc during surgery was fun. Of course I'm an engineer so was fascinated by the details! Having a good programmer is critical to fine tune the DBS. If you have an experienced surgeon and DBS programmer, I highly recommend DBS surgery if the docs are fairly certain that DBS will help!
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Old 09-17-2018, 04:08 PM   #5
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After 20 years of Parkinsons, my husband had a DBS right before Christmas, 2017. This is his 9th month after surgery, with 6 appointments for programming. Would we do it again......YES! Does it have some drawbacks? Yes. One thing we noticed was a change in his speech. His volume is much softer, he tends to speak faster, the longer the sentence, and when that happens, he stutters (not always, but some). Speech was not a problem before the surgery. He has started the Lee Silverman speech therapy program. He has lost about 75% of his tremors, and his medications have also been reduced somewhat. Granted, he is so much better without the tremors and all the meds he had before the DBS. But something I believe everyone should guard against is the expectations that they will return to the physical abilities they had before they started a decline. You can be so much better, but you will not be "cured".
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Old 09-18-2018, 10:59 AM   #6
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Originally Posted by JoClay View Post
After 20 years of Parkinsons, my husband had a DBS right before Christmas, 2017. This is his 9th month after surgery, with 6 appointments for programming. Would we do it again......YES! Does it have some drawbacks? Yes. One thing we noticed was a change in his speech. His volume is much softer, he tends to speak faster, the longer the sentence, and when that happens, he stutters (not always, but some). Speech was not a problem before the surgery. He has started the Lee Silverman speech therapy program. He has lost about 75% of his tremors, and his medications have also been reduced somewhat. Granted, he is so much better without the tremors and all the meds he had before the DBS. But something I believe everyone should guard against is the expectations that they will return to the physical abilities they had before they started a decline. You can be so much better, but you will not be "cured".
I much agree with JoAnn's assessment. I did note an increase in speech speed and a tendency to stumble over words since DBS. I read somewhere that this happens mostly on patients who have DBS installed on the left side of the brain. Overall I'm not perfect with DBS but its much better than it was. I would do it again in a heart beat!
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Old 09-18-2018, 01:00 PM   #7
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My husband's DBS was done on both sides, so I guess he had twice the likelihood of having a speech problem!
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Old 09-18-2018, 01:57 PM   #8
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My husband's DBS was done on both sides, so I guess he had twice the likelihood of having a speech problem!
I'm hopeful that present 5 studies ongoing now on reducing alpha synuclien will come up with a drug that will stop and even reverse PD. Georgetown Univ seems to be very knowledgeable in this and Prothena seems to be on a good track. I believe they are presently doing Phase II studies. Can't wait to see what they find out.
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Old 09-18-2018, 06:37 PM   #9
proudest_mama
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Default DBS and stiffness vs. tremor

All of these comments have been extremely helpful. In just those few posts I have gained a tremendous amount of knowledge.

One more question, however.

Originally my tremor is what was most irritating. Now my tremor is pretty much under control but when I'm "off" , my stiffness is unbelievably debilitating. And I'm not using the word "debilitating" lightly! Does anyone know if the surgery helps mostly those with a tremor and/or is it equally effective for those with stiffness?
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People will forget what you said,
people will forget what you did,
but people will never forget how you made them feel.


Quoted by: Maya Angelou (Reader's Digest Oct. 2006)
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Old 09-19-2018, 04:58 AM   #10
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proudest_mama,

Levodopa is normally effective at reducing stiffness. Before going down the DBS road, it seems sensible to me to spend some time optimising your drug regimen. If that doesn't work, DBS makes sense - but, what type?

John
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