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Appala

DBS Benefits & Un-Benefits

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Appala    8

I've been a member of this forum for a long time, but not usually a very active poster, esp. in recent  years. But I've been thinking for a while that I should contribute what I have to say in hopes that it may be helpful to someone.

I was diagnosed with PD in 2007, but believe I had some of the symptoms for many years before. My worst symptoms were a huge tremor & an unusual & painful dyskinesia that drew my right leg upwards, leg muscle spasms so bad that at times I could not walk nor stand for more than a few minutes. Sinemet never did much for me & caused muscle spasms/dyskinesia, even at very low doses, within a year or so of taking it. I had to use a walker, stopped driving, & withdrew from my usual local PD group activities & classes (a mistake, of course), because I felt I had to focus on figuring out what in the world to do about my situation.

Over a year ago, I had bilateral STN DBS, in study for new Boston Scientific Vercise device, not Medtronic.  Since then, I've had some very good moments, but also some very bad. We constantly struggle to get the device settings properly programmed, or maybe they actually are but the PD has just progressed, or maybe the surgery itself caused some problems. Would I do it again? Yes, because my extreme tremor & dyskinesia have both disappeared, and they really were intolerable. But the side effects are really bad, too: weight gain leading to serious diabetes problems, severe speech & language & swallowing problems, serious balance & walking problems, plus some possible cognitive effects, including word retrieval & fluency, all of which were excellent as tested before DBS. Negative effects on social functioning are very significant.

From my experience, I would have to say that DBS can be wonderful, but at this point in its development (it may improve in future), you should only consider it once your symptoms have become so bad that you can no longer tolerate them. You must decide that possible DBS side effects will not be even worse. Unfortunately, it's often a trade-off, you may lose some old symptoms & gain some new ones. If you decide it's still worth it, pick a good experienced surgeon, make sure there are good experienced programmers readily available to you, and remember that DBS works best for certain symptoms & not much or not at all for others. And remember: Exercise! I'm doing Rock Steady Boxing, learning to jump rope, & planning to resume PD yoga & dance. Good luck to us all!

Edited by Appala
Corrected typo (diagnosed 2007, not 2017).
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waruna01    52

Agree 100%. Most people lose their speech after DBS and lose their ability to communicate with other people. This is such a excruciating pain to bear as you are left depressed as you can't express your emotions. People will also avoid speaking to you as they can't understand what you are saying. Also, losing your balance is just as bad. Be very very careful and think very carefully before DBS. Mini strokes and bleeding inside brain is also common which can lead to permanent PD like symptoms post dbs which they will later blame on disease progression. Swallowing problems also common post dbs. Brain doesn't like to be poked with leads. Trade off may not worth it for most people if they end up losing their speech and balance and as most do. DBS companies have stepped up their marketing in order lure people who,don't even need dbs into getting dbs. So don't fall for their trap. Some centers also recommend dbs prematurely saying window will close if you wait. Don't fall for that. Knowing full well you will get a new set of symptoms to deal with post dbs, leads inside your brain, two holes in your scull and a battery in your chest that you can't live without and wires running through your neck. You will hear the rosy side of DBS from virtually every one and from the internet. This is the other side. So you can make a good independent judgment. DBS is not the holy grail for all PD symptoms. It works best with tremors and dyskinesia and few other PD symptoms but will have its own problems to deal with after surgery.

Edited by waruna01
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stump    463
1 hour ago, waruna01 said:

Agree 100%. Most people lose their speech after DBS and lose their ability to communicate with other people. This is such a excruciating pain to bear as you are left depressed as you can't express your emotions. People will also avoid speaking to you as they can't understand what you are saying. Also, losing your balance is just as bad. Be very very careful and think very carefully before DBS. Trade off may not worth it for most people if they end up losing their speech and balance and as most do. DBS companies have stepped up their marketing in order lure people who,don't even need dbs into getting dbs. So don't fall for their trap. Some centers also recommend dbs prematurely saying window will close if you wait. Don't fall for that. Knowing full well you will get a new set of symptoms to deal with post dbs

I haven't seen stats, so do you have a citation for "(m)ost people lose their speech after DBS and lose their ability to communicate with other people."  I've certainly read that speech problems are a recognized potential side-effect.  But "most" (i.e. >50%) is not the impression I've had of the occurrence of not just speech difficulties but near total loss of verbal communication.

 

Same with balance.  

 

I wonder what the %'s are of the admittedly small number of PWP that have had DBS on this forum?

Edited by stump
proof reading

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waruna01    52
22 hours ago, stump said:

I haven't seen stats, so do you have a citation for "(m)ost people lose their speech after DBS and lose their ability to communicate with other people."  I've certainly read that speech problems are a recognized potential side-effect.  But "most" (i.e. >50%) is not the impression I've had of the occurrence of not just speech difficulties but near total loss of verbal communication.

 

Same with balance.  

 

I wonder what the %'s are of the admittedly small number of PWP that have had DBS on this forum?

http://www.dbsprogramming.com/2016/07/

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TexasTom    716

Over all, still positive here.

The "loose their speech" does affect some, but in my Parkinson's meetings & Rock Steady Boxing class I haven't seen a decline of speech.  One of the things I did not expect was less chocking/gagging.  I love Tortilla chips, but often eating out I was gagging so badly I just didn't touch them, so that has improved.

Freezing. Much improvement.

Balance... I'd say a wash, I don't fall often but pre and post about the same.

Buttoning a shirt, shoe laces... Huge Improvement with finger manipulation.

Reduction of medication has been an improvement.

Dystonia... used to wake me in the middle of the night with twisted hand and twisted foot. Huge Improvement!

Peripheral Neuropathy. Much more aware for the burning. Irony is we addressed the Dystonia, so now I am aware of Neuropathy issues not fun at all. Adding Gapentin to my daily meds.  Nothing new as I remember thinking my feet were on fire a long time prior to DBS.

Cognitive... wash as I know I'd space out before DBS. I suspect this is just a progression of Parkinson's. Adding Donepezil (Generic Aricept) to my medication to help with memory. I gave up flying years before my Parkinson's Dx.

Weight, I had dropped from 300# to 235 (??) at the time of surgery. Went back up to 245# and have been holding around 240# since then. Bottom line is I had to cut out snaking on cheese and crackers when taking meds every three hours. Now with meds every four hours, gives time to snack. Sigh.

There is risk, but addressing DYSTONIA and wearing off of Sinemet was my reasons behind DBS. So it addressed those. Not a "fix for Parkinson's" at all. If it gives me a few more good years, why not. Enjoying a walk with my faithful Golden is worth every moment.

There are risk with DBS, doesn't cure anything, but I had two reasons (dystonia & med wear off) that it addressed. I returned to boxing too soon (take it easy for eight to ten weeks) no regrets.  I know some people who didn't fair well with DBS, but I'd say over 90% had improvements worth while.

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stump    463
On 6/19/2017 at 6:53 PM, waruna01 said:

First off, where on that site did you find those stats?  A quick perusal didn't show them, but I admit I only spent a couple minutes looking.  That said, that website is written by someone that specializes in people that are unhappy with their DBS outcomes.  So, not only could there be bias in sampling to come up with those numbers, she also has a vested interest in people finding dissatisfaction with DBS.  That is not to say she is at all unethical, or doing anything against overall best interests in the PWP population, but one must always consider the source.  

 

Color me still skeptical of your claims of >50% of DBS patients having near total loss of ability to communicate and developing severe balance problems as a direct side effect of DBS.

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waruna01    52

I have seen numerous published articles on scientific journals that talks about speech and balance problems post DBS. If you spend some time on google, you can dig them up. It's out there if you do an extensive  research on side effects from DBS.  There iare dozens of such stories in this forum alone if you do a search. I have also been to several DBS troubleshooting clinics in the country including Dr Okun's UF Florida center and Sierra Farris in Colorado. I also learned from them that speech and balance is a major issue post DBS on STN bi lateral leads. This is why UF center stage the DBS surgery one lead at a time. They see hundreds of DBS patients a year. This is an unmoderated open forum where we express personal opinions. What I made was generalized observation not a scientific claim. I am not here to tell you DBS is good or bad for you. What I said is be warned that your speech, balance, swallowing could take a permanent drastic hit post DBS from bleeding during lead insertion which can lead to permanent mini strokes in the brain and from stimulation induced side effects. This is also why dbs manufacturers now even added speech side effects to list of DBS complications in fine print. Since DBS is only becoming mainstream PD treatment  recently, it will take at least 10 or 20 years for these kind of stats to come out. Even if they did, bad effects will be watered down from marketing as DBS is now a million dollar business. Most people do dbs because they are desperate for some relief after battling PD for years and will overlook the side effects. This post is not meant  to say DBS is bad or good, I'm just highlighting a potential side effect which you may not wish to have post DBS. You may feel like you lost your soul when you lose your ability to talk and interact with other people. You can't undo the side effects of this surgery despite what they claim as reversible. Once implanted, you are stuck with it for life wheather you like it or not. 

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stump    463
19 minutes ago, waruna01 said:

This is an unmoderated open forum where we express personal opinions. What I made was generalized observation not a scientific claim. I am not here to tell you DBS is good or bad for you. What I said is be warned that your speech, balance, swallowing could take a permanent drastic hit post DBS from bleeding during lead insertion which can lead to permanent mini strokes in the brain and from stimulation induced side effects. This is also why dbs manufacturers now even added speech side effects to list of DBS complications in fine print. ... This post is not meant  to say DBS is bad or good, I'm just highlighting a potential side effect which you may not wish to have post DBS. 

This much I will gladly grant you.  It is indeed an unmoderated forum, and you did express a personal opinion, not a scientific fact, though you made it sound like you had data behind your assertion.  I countered your assertion with skepticism.  This is not without precedent.  

 

Had you said "DBS has plenty of benefits, but some (% uncertain but could be closer to 50% than 0%) have issues with severe speech and balance problems after surgery that cannot be reversed by programming, turning off the stimulation or removing the hardware" then you would have made a similar point and I would have just nodded, maybe said something about the rates if I had data at hand, but probably just passed it by without comment, like most of what I read on here.

 

At the end of the day, however, I have read, by far, more commentary from those happy with their DBS experiences than not.  And while some on here have reported speech and/or balance problems it is not usually the near total loss of ability to communicate or severity of balance problems you asserted were more common than not as an outcome.

 

I have no doubt that Sierra Farris and some others you've spoken with about this have horror stories of such effects.  It wouldn't even surprise me if they reported high rates of such problems in their patients.  But those folks only see people that are already in the "adverse outcome" category for DBS so they tend to give a somewhat skewed perspective.  

 

My question is, what are the actual rates of those adverse outcomes?  STN DBS has been around long enough to have a sufficient population to draw some conclusions about the rates of various side effects and complications.  If the rate for extreme speech impairment really is 50% or more I'll happily grant you the point, and will probably take DBS off the table for personal consideration.  However, if the rate is more like 0.50% then I'll probably take my chances.

 

Please understand, I'm not meaning to pick on you.  This is very much not personal.  I just have a real difficulty seeing assertions that appear to have sound data behind them when they really don't.  That can mislead people in ways that are potentially significant.  If someone reads your claim and sees no counter claim they might choose to avoid DBS and thereby miss out on a (positively) life-change procedure.  Of course, the flip side is also true.  

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waruna01    52

I can assure you rate is more than 0.5%. Speech side effects from DBS is very common and it's one of the major side effects from DBS. whatever the real number is, if you are one of the unlucky ones to experience speech side effects, you will experience 100% of its bad effects including loss of your social life. You are not in the DBS group just yet to see the full picture of DBS. Either you or someone in your family needs to have DBS to get a full picture of DBS. You can't understand what it really feels like to have DBS from reading comments or doing online research. Same with losing your speech. It may be only a small problem for a person who doesn't talk much or a major problem for a chatty outgoing social person. So be careful about reading comments. I can understand why people don't like to talk bad effects from DBS as it's the only hope for PD patients to turn their life around. I am not saying DBS is bad. It may work well for the right person but be warned DBS is notorious for speech, balance problems post dbs. It can also lead to uncontrollable anger, emotions, sucidal throught etc. you will see such posts here in this forum as well. so be warned prior to surgery. It can happen to you and only you can decide how big of problem that it would be as everyone's life's are different and opinions are personal and want necessarily apply to another persons life. It could only be a small problem for one person but a major problem for another person who is at a different age and a different stage in life. So be warned when reading comments.

Edited by waruna01
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TexasTom    716

For those with DBS who are having issues getting everything dialed in, please reach out to your Medtronics (if applicable) rep to join you at your MDS programming session. 

DBS is still an art, as much as a science, so your MDS might be working on a 10 x 10 matrix that helps 90% of their patients. The other 10% have to realize the possible matrix is like a 200 x 200 spreadsheet so you may need something different.

DBS isn't a cure all, but to have a few more years of being productive at work it was well worth it for me.

Time is limited, so I'm out of here.

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MurrayPD2    219

I met 4 people in person and know if at least 3 more online.  None of them complain about speech or balance, but that is just my experience so far.  None of them had an infection, but I did, and I still recommend it.  Yes, there are risks, but the QOL can be improved for many.

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waruna01    52

It seems side effects are hit or miss but if it affects your speech, your voice is gone for good for the rest of your life. Changing stimulation parameters can only provide limited benefits as change in speech likely due to micro lesion effect,from lead insertion It's a big gamble especially when it comes to speech. You only realize how important your voice after losing it. It will also stop other people from talking to you. Speech side effects can negate benefits of DBS

http://www.dbs4pd.org/UserFiles/File/SpeechIn Ind_PD_rev_.pdf

http://jnnp.bmj.com/content/jnnp/early/2016/08/16/jnnp-2016-313518.full.pdf

 

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waruna01    52
On 6/21/2017 at 8:38 PM, MurrayPD2 said:

I met 4 people in person and know if at least 3 more online.  None of them complain about speech or balance, but that is just my experience so far.  None of them had an infection, but I did, and I still recommend it.  Yes, there are risks, but the QOL can be improved for many.

Speech degradation post DBS can also happen gradually. At first, degradation may be so subtle and you may not even notice it. It takes about 5 years for speech to deteriorate completely and other DBS side effects to fully surface. So be careful about listening to people who just had DBS in the last couple of years. At that point, it's hard to tell if it is the DBS causing the side effects or disease progression. It's easy to blame it on disease progression than DBS and most DBS centers blame it on disease progression. That could be why DBS side effects get overlooked in studies 

Edited by waruna01
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Ken_S    96

This thread brings to light the importance of proper patient selection, lead placement, and expectation control; none of which can be predicted through industry wide statistics or individual subjective experience. In Appala’s original post she stressed the importance of choosing an experienced team; I would only add to that: with good outcomes. Sure, ask the questions about adverse outcomes but don’t prejudge your team based on someone else’s outcomes.

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At 88+ years and with somewhat debilitating PD symposiums already -- swallowing, speech impairment, & walking/balance problems -- I can't imagine having DBS and to expect any improvement. So, this coupled with  input from my PD physician, I'll not concern myself with further questions regarding DBS!

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TexasTom    716

Lowell, You're a very wise man!  I think there is a point of weighing options on everything. Just do what you think is best for you.   My wife's 83 year old Dad Dad has Parkinson's, and when her stop Mom was talking about his diagnoses, she finally paused and asked my wife "how did you learn so much about it?" Small world.

For me, at 57 when I had DBS done last year, without a doubt my medication was the the point when I went "off" I just stopped functioning. Couldn't write a note, nor speak clearly, so people assumed I was either drunk or an idiot. Oh my, so with DBS I still can function when "off". Who knows what tomorrow will bring, but I'll take it one day at a time.

My latest CT scan shows tumors in my upper long. Sigh, not good. I had part of my lower left lung removed 18 months ago. Thoracic surgeon commented my blood supply was like a bowl of spaghetti. Chemo doesn't touch this stuff, Immunotherapy hasn't been invented yet to treat this type of lung cancer, surgery is best option (but not in my case), so radiation is be best bet. Just wait for it, and like a star wars movie just blast it when the time in right.  My oncologist is good, but when she thought "I didn't understand" I smiled and said it was great news as I may not have to worry about Parkinson's!  One day at a time. 

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Linda Garren    750
On 7/6/2017 at 2:22 PM, Lowell Vanskike said:

At 88+ years and with somewhat debilitating PD symposiums already -- swallowing, speech impairment, & walking/balance problems -- I can't imagine having DBS and to expect any improvement. So, this coupled with  input from my PD physician, I'll not concern myself with further questions regarding DBS!

Hello, Lowell.  You are from Emmaus?  As in the city toward which Jesus walked the road?  :-) 

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scottwh    5

 this is totally nutty,do you have any evidence for your claim or is it all a conspiracy

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stump    463
On 6/21/2017 at 0:12 AM, waruna01 said:

I can assure you rate is more than 0.5%. 

OK.  So what is the actual rate (including citation to a non-paywalled source, please)?

 

On 6/22/2017 at 9:45 PM, waruna01 said:

Speech degradation post DBS can also happen gradually. At first, degradation may be so subtle and you may not even notice it. It takes about 5 years for speech to deteriorate completely and other DBS side effects to fully surface. So be careful about listening to people who just had DBS in the last couple of years. At that point, it's hard to tell if it is the DBS causing the side effects or disease progression. It's easy to blame it on disease progression than DBS and most DBS centers blame it on disease progression. That could be why DBS side effects get overlooked in studies 

Sorry, but this is shifting of the goal posts.  Now you're saying it's hard to tell the difference between DBS effects and normal progression, but then still blaming DBS.  Which is it?

 

On 6/21/2017 at 10:46 PM, waruna01 said:

It seems side effects are hit or miss but if it affects your speech, your voice is gone for good for the rest of your life. Changing stimulation parameters can only provide limited benefits as change in speech likely due to micro lesion effect,from lead insertion It's a big gamble especially when it comes to speech. You only realize how important your voice after losing it. It will also stop other people from talking to you. Speech side effects can negate benefits of DBS

http://www.dbs4pd.org/UserFiles/File/SpeechIn Ind_PD_rev_.pdf

http://jnnp.bmj.com/content/jnnp/early/2016/08/16/jnnp-2016-313518.full.pdf

 

Again, this is shifting of goal posts.

 

Mind you, I am NOT saying the DBS is innocent.  Speech problems are a known side effect.  Not once have I disputed that.  My issue with your claims rests on the extent of that effect.  Death can also occur.  I'd rank that as worse than losing speech capability.  But death can also occur from any surgery (including root canals).  I'd prefer to have actual data on the rate of adverse outcomes and actual data on positive outcomes (and the extent to which those co-occur in patients) and then use that to asses my tolerance for the risks of the procedure vs the benefits.  

 

Again, what are the actual rates?  I get it that it doesn't matter if it's 1:1mil if you are the unlucky 1.  But, not knowing ahead of time, I'd take the 1:1mil chance.  If it was even, say, 25% chance I'd never be able to verbally communicate again I'd be reticent.  So what are the odds?  I don't have the data, but you certainly sound like you do.  Please post it and show me that you are actually right and my skepticism is mis-placed.

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RNwithPD    168

Stump,

The "actual rates" of adverse affects from DBS surgery have been documented in several research studies. I have read through them at work (a hospital) where we have paid access to an online research database called EBSCO. Unfortunately, I didn't print them out and you wouldn't be able to independently verify them unless you had access to the database. However, I can tell you that the overall rate of something going wrong with DBS surgery in general is approximately 4%. This was also confirmed today by my MDS. Implanting the electrodes in SNT yields slightly more adverse affects on speech and gait (walking/balance) than GPi. I don't recall the exact numbers, but the rates were relatively low (i.e. <10%). Also, the effects were relatively mild. I had my initial DBS surgery meeting with my MDS today and she confirmed this. She also stated that it is difficult to know whether the speech issues were caused by the surgery or simply disease progression. The main point, though, is that these adverse affects are nowhere near as severe or prevalent as the waruna01 is trying to imply. I, for one, am moving ahead with the surgery. I have personally spoken with several people who have had excellent results from the surgery, and have read numerous research articles outlining the risks and the benefits, so I feel pretty well informed on what to expect.

Hope this helps.

Kevin

Edited by RNwithPD
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otolorin    30

Hi, RNwithPD.Can I ask how you have been coping with PD symptoms,medication side effects and your job.Do you do clinicals,or soley administration?I do rehab in the homecare setting,and I was wondering how you respond to your patients,if they ever noticed any of your symptoms,and out of curiosity they ask what is wrong.Have you  been in this kind of situation,where you have to reveal to your patients about your PD? If so,do they feel comfortable with the quality of care they get from you?I am glad to see that we share similar field of profession.Please share your on the job experience.I will like to go back to work,as I am a YOPD,and currently running out of disability insurance.My boss would not consider any non clinical position,which will be exact for my PD status,I mean administrative.Please respond.

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stump    463
12 hours ago, RNwithPD said:

Stump,

The "actual rates" of adverse affects from DBS surgery have been documented in several research studies. I have read through them at work (a hospital) where we have paid access to an online research database called EBSCO. Unfortunately, I didn't print them out and you wouldn't be able to independently verify them unless you had access to the database. However, I can tell you that the overall rate of something going wrong with DBS surgery in general is approximately 4%. This was also confirmed today by my MDS. Implanting the electrodes in SNT yields slightly more adverse affects on speech and gait (walking/balance) than GPi. I don't recall the exact numbers, but the rates were relatively low (i.e. <10%). Also, the effects were relatively mild. I had my initial DBS surgery meeting with my MDS today and she confirmed this. She also stated that it is difficult to know whether the speech issues were caused by the surgery or simply disease progression. The main point, though, is that these adverse affects are nowhere near as severe or prevalent as the waruna01 is trying to imply. I, for one, am moving ahead with the surgery. I have personally spoken with several people who have had excellent results from the surgery, and have read numerous research articles outlining the risks and the benefits, so I feel pretty well informed on what to expect.

Hope this helps.

Kevin

That is in line what I've come across.  Which is why I was pushing waruna01 to provide data.  I get that a lot of studies are pay-walled, but are abstracts and such are often still available that give some of that data.

 

Thank you for your post.  I'm likely still 2-10 years away from DBS.  I'm hopeful that by then they'll have figured out a way to reduce the already low rate of complications and nearly eliminate the most severe ones.  Whatever the case, when my MDS recommends it I will likely pursue DBS.

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