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WindsongMoonChild

DBS and you...?

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I remember with stark clarity the day my MDS at Vanderbilt Hospital suggested that I would be a good candidate for DBS surgery.  Frankly, I was in a state of total shock.  After all, I was only, I think, 49 at the time and my first thought, indeed, the first words out of my mouth were, "Surely I'm not that sick!  Isn't that an avenue of last resort?"  

 

So there it was, my first lesson in the sometimes confusing world of DBS.  My MDS explained to me, that day, that DBS was pioneered with the younger patient in mind...

 

But, to say that I was given all available information, (outside of the bare bones and that little nugget of information about which cases constitute a good candidate and which cases do not), I was told very little.  Why?  Lots of reasons (good and not-so-good I imagine), and, so I was left with the only decision making option we all have:  Research and ask lots and lots of questions.  I did.  But, if you don't know the right questions to ask, the professionals are very unlikely to volunteer them.  Hmm... now, why is this?

 

Well, for a multitude of reasons I imagine.  Perhaps they hold some things back because not everyone experiences the same things.  Or, perhaps it's because they prefer not to "alarm" us.  Sometimes, it could simply be that they see so many patients, that they forget whom they've told what to.  And, there is also the possibility that, if they slap every available option, outcome, possibility, drawback, and distress they've ever seen in front of the patient--the pool of candidates ready to take the risk would fall sharply!  Moreover, since we are all wonderful snowflakes and Parkinson's is, as we all know, a snowflake disease--as individual as we are ourselves--maybe the only sane approach is for the medical profession to hit the big points (such as risk, et al) and, then, wait for questions to arise or individual problems to come up.  I suspect the latter is the most widely held approach.

 

So, where does that leave US as patients?  I remember, before (and after) my surgery, trying like the dickens to hook up with a support group.  Either there were none available, or the doctor's weren't talking!  So, I turned to the PDF forums... with the usual, "Hey, does anyone else out there have DBS?" questions...  Mixed results.

 

What did that leave me?  Well, for the first several years, I managed the best I could with trial and error.  This, was sometimes a bumpy road let me tell ya!!  But, over the course of time, I actually began to learn the finer points of my DBS and how to manage it effectively (for me) and, thus, get the most out of it.

 

O.K., so how does that help anyone contemplating DBS surgery?  Or, the patient who had DBS, but is not getting optimal (or, even close to optimal) results?  What about the patient who started out fabulously, but has deteriorated over time?  What about the countless other possibilities, unexpected benefits or drawbacks, fear management, depression, and such?

 

Well, I'd say, (of course) talk to your doctor(s).  But, in addition, perhaps this forum will be a good place to look for input.  But, remember, one size does not fit all!!  Take any and all advice you get here under advisement - because we are all different!

 

The sad truth is, that Parkinson's Disease is the thing that brings this rag-tag group of strangers together.  Some of us have jumped (fallen? slipped? drifted? whatever!) into DBS in a (sometimes desperate, sometimes not) attempt to improve our PD lot in life.  I, for one, will be visiting here to learn things, validate my own experiences, and connect with kindred spirits--either because they have DBS, or are contemplating it.

 

So, welcome one and all...

I'm glad we have our own little corner of the world!

Kim

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Kim,

 

Given your experience with DBS, was DBS a good choice for you in your opinion? Have you benefited from DBS greatly? Did it improve your qualify of life?  Would you do it again if you had the choice?

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I have started the process so will be asking lots of questions.

What should I expect when I have the neuropsych. Exam

 

Well, noah, I would expect the very thing the neuropshych team told me to expect: "Kim, if you don't walk out of here feeling a little stupid, we probably haven't done our jobs properly!"  The testing turned out to be everything they promised and I was certain that I was either too stupid, or too far cognitively impaired to be a candidate for the surgery.  So, it was with great relief and surprise that I heard the news that I had tested above average for my age range.  

 

I remember one of the questions as if it were just asked a few minutes ago... who was the first president to be assassinated?  I was British born, but had lived in the US for a good many years, had taken American History in college--and, drew a complete and total blank.  I'm sitting there saying, "he had a big chin, and a tall hat, and a beard, and he said four score and ten I think...!!"  And, the poor tester just kept looking at me saying, "But, you have to say the name!"  And the only name that would come readily to mind was Winston Churchill and old sir Winston just kept on shoving old Honest Abe right out of my head!

 

Needless to say, I left the testing feeling stupid, embarrassed, and a complete and utter failure.  The card matching games and the picture identifying games drove me up a wall... I kept second guessing myself and stressing over the results until, that Friday, I called my contact at the hospital and told her, "If you have any mercy for me at all--and the test results already--please don't make me wait until Monday for them, I will completely lose the plot if you do!"  She was so casual about it, because to her, I should have known I had nothing to worry about.

 

Well, it's easy to feel stupid when everything hinges on you passing a test that seems designed to make you fail!  Take a deep breath, wade in, and remember, if you don't do well--perhaps they'll re-test you and, if not, then perhaps the surgery is a bad idea for you.  It's not a personal failing, it's a disease progression thing more likely.

 

 

Kim,

 

Given your experience with DBS, was DBS a good choice for you in your opinion? Have you benefited from DBS greatly? Did it improve your qualify of life?  Would you do it again if you had the choice?

 

Good questions and, I will answer them frankly...

 

Yes, DBS was an excellent choice for me.  Have I benefited from it greatly?  Ohhh, yes.  But, that isn't to say I haven't had my ups and downs.  Nor is it to say that the benefits are going to last forever.  There is no firm timeline for any one individual as to how long DBS will be effective.  I have read that some studies say about ten years, but that it can be a great deal longer.  That would not surprise me one bit.  After all, my battery (neurotransmitter) was supposed to have a 3-5 year life--and, I am currently into my seventh year.  

 

As to my quality of life?  Well, it appears to have slowed the progression of my disease down to a snails pace when compared to its progression prior to DBS, so that alone is an improvement.   However, in the past two years or so, I started suffering with something I had never before experienced: Depression.  I have no way of knowing if this is a function of the disease or the DBS, but since treatment has worked very well for me, I have no reason to question it any further!

 

Finally, yes, I would do it again in a heartbeat.  

 

Regards,

Kim

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waruna01, It would not be fair if I did not tell you this, also...

 

There have been days when I have wondered if DBS was the right choice for me.  And, one day when a doctor, frustrated that he couldn't seem to nail down a good adjustment for me actually voiced that concern.  I left his office, went home and cried like a baby.  Then, I pulled myself together and texted my Medtronics rep (who was in the room during my surgery) and, told him what the doctor had said and asked him if, perhaps, I was after all a poor candidate and destined to do badly with DBS.  He called me right away and, gently but firmly reminded me that 27 specialists--from neurosurgeons, neuropsychologists, physical therapists, and several neurologists--all looked a me, videos of me, my history, my progression, my age, the time since my diagnosis, my neuropsychology results, my meds progression, and a whole slew of other things and they all agreed unanimously that, not only was I an excellent candidate, but I was in the top 15% of good candidates!  Confidence restored, I went back to the doctor and told him exactly that--politely, but in no uncertain terms.  His attitude changed immediately, he made a completely new adjustment--and, we've never looked back.  

 

The fact is, making the decision to have DBS is a very personal thing.  But, once you have made the decision and gone ahead with the surgery, it is VITAL to manage expectations--and, sometimes, not just your own!  Also, it can take a Herculean amount of patience and stick-to-it-iveness.  SO, if your personality is not up to that, take that into consideration during the decision-making process.  

 

And, noah, ask all the questions you like, I can guarantee someone here will have a sensible answer.

Kim

Edited by KimAgain

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Dear Noah, I had the surgery June 25th and am still working with my MDS to fine tune my settings.  I have been told by some of my forum friends to have patience and take things slowly.  Every tweak takes 2 weeks or more to feel the full effect of the change and it can be frustrating to know if the change helped my issue or not.  When I don't see a change right away a I get frustrated but then am amazed when 3-4 days later something changes.

 

I have noticed (or perceive) that my cognitive abilities have slightly declined as far as finding the right word at times, memory issues (Short term), slower gait, some slurring of speech when tired.  On the other hand, I no longer have a window of on time of less than an hour when I am taking my meds q 2 1/2 hrs.  I no longer have dyskinesia or tremors, or stiffness . I have more energy to do household tasks although I still have days when I am overspent from trying to do too much the day before and cannot do more than watch tv or read.  I still have dark days wondering how bad I will get and "WHY ME?". 

 

When I spend time with my grandbabies I realize how lucky I  am to spend some quality time with them whereas before I basically sat in a chair and watched the activities.  Remember DBS is not a cure...more like a respite from constant movement, rigidity, grimacing and jerking.   Would I do it again? You betcha!  READ, EDUCATE YOURSELF, WEIGH YOUR OPTIONS.  We are all so different in this disease process and your decision has to be personal.  Only you are there when you close your eyes at night. Oh that is if you are able to sleep.  I forgot that added benefit of actually sleeping through the night. MICKI

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My neurologist told me the neuropsych test was like the SAT on steroids and laughed. Turns out he was right. Like Kim, I felt that I had tested poorly. Turns out I was wrong, scored very well. Do not worry or fret, just do your best.

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Almost the same results from neuropsych test. The Neuro Psychologist  was great he saw how I was dressed,( I was a rancher for a lot of my life), he started his conversation in that vein, made me very comfortable, when I was calm we went in and did the test. Oh, he did ask my wife more questions about my attitude and moods then he did me. After we were done he told me I was slightly depressed, but not to make to much of it. It is easily treated and most likely caused from the PD. Tim
 

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I participated in a study a couple of years after my neuropsych testing--to, test memory and such.  One of the tests was, to give as many words as possible beginning with the letter "S." (In two minutes.)

 

Well, I panicked, but I started groping around in my head...

 

Serendipity

Salacious

Sadistic

Schizophrenia

Shallow

Sallow

Sachet

Stalwart

Sinusitis...

 

And, so on. But, I was tripping over my thoughts and my tongue, I was so nervous my mouth was dry, and I just knew I'd failed miserably.  

 

Well, after the fact, I could think of so many more words than I had given!  I told the "tester" this and he said, "M'am, I don't think you have anything to worry about, you were giving me words so quickly I couldn't write them down, much less spell them!  And, by the way, most people give words like, Six, Shy, Slow, and Sorry!"

 

Just goes to show you, huh?!

Edited by KimAgain

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Hi everybody !

 

My name is Mireille and  I live in France. I had bilateral DBS-STN surgery in March 2000, so I have been living with neurostimulators (at the time they placed two of them, one for each side) for over fifteen years. My surgery was done in Belgium (where I was living at the time) and I had to have a second one two years later (this time in France) because one electrode (lead) was suboptimal.  At the time, it was only the beginnings of DBS-STN. I was the 8th patient and the youngest (I was only 47 but had been diagnosed for 13 years)  that they operated in Brussels. I had to insist that they accepted me, as they were hesitant because of my young age (at first, they'd rather try their hands on older people !!).  Well fifteen years later, I am still "alive and kicking". I would not want to imagine how I would fare now if I had not had it.  My main problem before surgery was tremors, which were very bad and very embarassing socially.  I have not had one tremor every since first surgery. My gait which was normal (or just about) prior surgery has been a problem for a long  time after surgeries. But here comes the question of programming. It can be a very long procedure, each patient being a different case.  Back in 2000, they had little experience and it was definitely a trial and error thing. I know the procedure is slightly different in the States and in Europe. Here, at least in France and in Belgium, programming is only done by neurologists.  I know that in the States it's often taken care of by people who have received special training but who are not physicians. There are pluses and minuses in each case, but what is most important, the person who does this programming must be totally dedicated and convinced by the procedure and willing to keep trying to find the optimal settings. If you don't have a go-getter, someone who is 200 % willing to try all solutions possible, if you are dealing with someone prone on giving up too easily, then if your case is a difficult one, you may not reach your optimum and you should go and see someone else. This surgery is not a one shot thing. You have to realize that you will have a life-long follow-up and even though it is often said that once the proper settings are found, they don't vary much, this is not what I have experienced. Sometimes certain parameters are good for a few years, then they need to be adapted, just as medication needs to be tailored to disease evolution. And that is when if you are in proper hands your needs will  have better chances to be met. Over the years, I have come accross doctors who gave up on me (saying 'I don't know what to do with you!) but I did not call it quits and found someone else who was more knowledgeable and more optimistic and rightly so ! Speech/voice can be a problem (I have not had it) but i've seen people who were greatly improved by adapting parameters in a certain way (lowering it I think).

 

To summarize, the number one aspect is to turn to a specialized team (I insist on the term team because success is dependant on the alliance of a surgeon, a neurologist and a neurophysiologist (who uses micro electrode recording to help determine the right location), all with wide experience of the procedure.

Number two is to have a good programmer.

Number three is to choose a team that requires that patients be awake through the procedure (it seems results with patients partially sedated are not as good, so why take a chance, lying awake on an operating table for twelve hours is no picnic but if the outcome is better, i think it's well worth it)

Number four is to insist on micro electrode recording ; it proves to be decisive on the selection of proper location of electrodes. Some teams use other, less time consuming means but the results are not as good, I understand.

 

Well, that's about it, folks !

Oh yes, one last thing, if I had to do it again, I would in a heart beat !

 

Regards,

 

Mireille

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bonjour Mireille...........

and welcome.... I've watched your posts in the "ask the DR/surgeon forums, and wondered if you would make it here. I hope you stay awhile and let us get to know you much better. I think we all could learn a lot from your experience over the past 15 years.... The fact that you are still here gives the rest of us hope.... to follow in your footsteps.

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Welcome Mireille, and many, many thanks for your post.  I agree with you totally!  Although I have only been wading through the DBS ocean for seven years now, I have learned the "hard" way that a good programmer is vital and patience, even more so!  Tenacity in one's own treatment is the key thing, I think, one cannot simply accept the opinion(s) or conclusion(s) of one professional as "gospel"--especially if their treatment plan is not working for you!

 

Very informative post,

Thank you!

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Mireille, did your post-surgery walking problem improve with proper programming? My friend just had DBS and  now has a serious new walking problem after the surgery that he never had before. Programmer says she may not be able to fix it.

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Yes, it did. I will post later a more detailed account. I'm away from home for a family gathering. Thank you all for your warm welcome. I'll try and be as informative as possible.  We are indeed our best advocate !

 

Mireille

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