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 ...

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.

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!

One star
 

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!

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.

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?

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

Rytary
 

I have mentioned this before. If you are having periodic stiffness and are taking Sinemet, you should ask your doc to Rx Rytary. Rytary is Sinemet but comes as a capsule with small timed release particles and should better even out the dopamine swings your brain has when on Sinemet..

I live in Florida, North Carolina and Philadelphia. What this means to me is that at various times of the year I am in places where there are choices for DBS. Coming to mind are U of Florida, North Carolina at Chapel Hill, and Philadelphia at University of PA (HUP) and its' affiliates. Does anyone have opinions about choice? Thanks! (U of NC is not in the picture now because of the terrible flooding we have had there. I am in Florida now. I "should" be in NC but have to wait until the floods have subsided.)

Magnesium goes a long way toward reducing stiffness. I also take extended release (ER) Sinemet. DBS has reduced my tremor 95%, I love it!

has your neuro told you he/she thinks you would be a good candidate for DBS? That's your first step, if your neuro thinks it is your best choice then believe him/her. noone is going to really try to convince you, they'll give you facts and leave it up to yourself/family to ponder. neuros are busy and don't have a lot of time to discuss DBS with you if your're on the fence. but if they say your're a good candidate, then don't wait, get it done, imho a reputable neuro imho isn't going to recommend a DBS unless it is the best choice for you, they put their reputation on the line everytime the recommend a DBS so won't recommend it to someone who isn't going to first past the tests and second be able to handle the stress of 2 operations and a year of programming the neurotransmitters.

i was approved and scheduled for surgery but backed out of it. i just didn't feel i had the family/friends behind me if something bad happened. i'm single, no significant other and if by chance i was one of the few that had something serious happen i would be alone. I had my doubts about this from the start but noone seemed concerned so i stopped worrying about it until someone on this board had a DBS, SCOTT someone - military - and he developed a serious infection and was in the hospital for awhile. then a friend loaned me a book written by someone who had to have all of the DBS equipment replaced after a year, the risk is low but i just couldn't put the burden of my becoming incapacitated or having to be hospitalized for awhile on my sister who has a full time job. i'm also not on medicare and having TRUMP as president scared me out of the DBS, he pledged to get rid of the AFCA and i didn't want to take the risk the i'd get the DBS and then not be able to get affordable health insurance within the next year. if i was married, then i would have gone thru with it without hesitation and probably years ago. as an aside, when i cancelled the surgery, nobody made a big deal about it. noone tried to change my mind, there was no discussion. medical people dealing with pd are busy and above all, they don't want to operate on someone who might back out when they are on the operating table. doesn't matter to them, there is a lineup of people waiting for a DBS.