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WindsongMoonChild

4-Year DBS Follow-up

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I spent last Thursday and Friday at Vanderbilt Hospital in Nashville undergoing testing to see how my disease has progressed since my DBS surgery which was completed four years ago this past July.  I thought I'd share the test results with my extended PD Family since you have all been along for the ride for some time now.  So, here goes...

 

Physically, I'm holding up pretty well, in fact, "holding" would definitely be the operative word.  I was in Stage II before the surgery and, as of now, I remain there.  My general PD symptoms (balance, tremor, etc.) were evaluated with my DBS switched off for a period of time and then again with it switched back on.  The disease has, of course, progressed, but the DBS has kept the physical changes I have undergone from making themselves too apparent in my body--because, so far, when they appear, a DBS adjustment usually corrects the problem.  At the time of my surgery I was on 600mg of Sinemet a day, now I am taking between 400 to 600mg daily.   My MDS scheduled me for another evaluation in a year.    

 

Then, there was the neuropsychology department and the cognitive functions testing--the thing I dread every time.  Mixed news there, but on the whole, I'd say relatively positive results.  There have been, as my neuropsyche doc put it, "some changes in your cognitive functioning."  Hmm... OK, what?  Well, it seems I am a little slower at retaining new data than I was four years ago.   Also, on the dot-to-dot testing (as I call it), I have slowed down.  This is the test where you are asked to draw a line in numerical order from multiple numbers jumbled on a page.  Then, in numerical and alphabetical order from numbers and letters jumbled on a page (1-a-2-b and so on).  Evidently, I'm slower at this test than I was four years ago.  

 

The UPside, however--and, the area of my greatest fear--is that I am showing, "absolutely no signs whatsoever of Alzheimer's or early dementia."   Well, I'll take dot-to-dot slowness over slowly going dotty any day of the week!  

 

In other areas of brain testing, I'm told I knocked it out of the ballpark.  The tester very kindly thanked me for being, "the most fun person" he'd ever tested, which I thought was rather nice, since I fear it can be annoying--I make jokes when I am nervous.  On the, "say as many words beginning with the letter "S" as you can in one minute" test, I gave words such as, "serendipity, serenity, sacrifice, synonym, and shale..." where most people, they tell me, list words such as, "sleep, sit, sorry, and seven."  The tester rather thought I favoured Royalty in "my name as many boy's names as you can in one minute" test, but really, George and Edward were my father's names and I have relatives to thank for leading me to James, William, Henry and so-on.   

 

My DBS battery is still going strong (currently at 2.94) and my MDS thinks I could get at least another 2 years out of it at this rate.

 

So, there you have it... pretty much, good news I'd say.  I'm passing the information on in hopes it will  prove useful to someone in some way.

Kim

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Rogerstar1    385

What is the deciding point to have DBS done?

 

Discretionary.  My neurologist began discussing it with me about  18 months before I opted for DBS surgery when I was taking around 17 to 20 pills a day and still crashing about every 90 minutes.  She cautioned me that the reason for moving ahead was to have it done while I was in reasonably  good  health and could  pass the rigorous screenings essential to getting approved.  Mental acuity testing is laborious and a stroke or other maladies might have have 'grounded me '. 

Don't rush in as you wouldn't want to begin the 18 month to 2 year honeymoon period  (respite) likely with DBS before PD was seriously encroaching.  Then again I read and filed in this forum a study indicating earlier deep brain stimulation was beneficial and lacking drawbacks.  When, whether, what kind (there are two types) of DBS is brain surgery after all and so complicated I wound up pretty much relying on the good judgement of my doctors. 

Good luck to you Sheila.

R., 

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What is the deciding point to have DBS done?

My MDS told me that DBS surgery is only a viable option in PD for patients who see therapeutic results from drug treatment.  In other words, if you are responding to medication, you will respond in pretty much the same way to DBS.  In my case, that was most certainly true. It was explained to me that if you are responding to drug therapy but are requiring higher and higher doses to achieve therapeutic results, then--if you meet all the other cognitive and general health requirements--you are a candidate. They also told me that young onset patients are, generally speaking, the best candidates for the surgery. 

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Beau's Mom    1,060

Kim, I met the cognitive and other requirements but was disqualified because of the severity of one of my long-standing pre-diagnosis non-motor symptoms: Depression and anxiety. I am hoping to qualify for the Duodopa pump when it becomes available.

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Kim, I met the cognitive and other requirements but was disqualified because of the severity of one of my long-standing pre-diagnosis non-motor symptoms: Depression and anxiety. I am hoping to qualify for the Duodopa pump when it becomes available.

Yes, Dianne, sorry, I sort of lumped that in with all the other "general health" requirements.  There is no doubt the pre-qualifying tests  strike for quite a rigorous standard, but I imagine that is for the purposes of achieving the very best outcome for all concerned... doctors included!

 

Have you heard anything on when the pump might be available?  

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Rogerstar1    385

From seventeen to twenty, 25/100 Sinemets every 24 hours  down to three taken in half pill dosages, as needed.

Edited by Rogerstar1

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She-Ra    63

Sounds like I might not be a candidate further down the line.  I have no resting tremor.  Sinemet has not helped my symptoms.  I was diagnosed at 59.  I took anti-anxiety drugs for about 10 years and stopped about 4 years ago.  This is depressing - I guess I better start taking them again. :|

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You never know until you ask your MDS, is my thought Sheila.  I was taking Klonopin for anxiety at the time (still am), I was 51 when I had the surgery, and I had very little therapeutic results from Requip or Mirapex.  

 

Next time you see your MDS, ask... it never hurts to ask.

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She-Ra    63

Dang, there is just no rhyme or reason to this, is there?  PD makes it up as it goes along!  I haven't been to my dr. in over a year.  I guess it is time to check in.

 

Kim, I am going to Emory but would be interested in who you use since we are near each other.  Thanks.

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young_dad    96

Brad,  

 

I got my DBS in August and had a small stroke, so I am definitely an outlier.  I have not decreased my meds at all yet.  My tremor is gone, but all my balance and gait issues are still there.  I had only one side done, so that might be part of the issue as well.  I am also still going through the programming process and hoping that I will find a setting that will work well with my gait issues.

 

For those with DBS, how much has it decreased the amount of medication you have to take?

Thanks for any input.

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Dang, there is just no rhyme or reason to this, is there?  PD makes it up as it goes along!  I haven't been to my dr. in over a year.  I guess it is time to check in.

 

Kim, I am going to Emory but would be interested in who you use since we are near each other.  Thanks.

My YOPD specialist at Vandi is Dr. John Fang, my neurosurgeon was Dr. Joseph Niemot, and my local neuro is Dr. Matthew Kodsi.

 

You are absolutely correct--they do not call this a snowflake disease for nothing--but, in a way, I see that as good reason for hope. Since we none of us have cookie cutter responses to anything, that gives us good reason not to assume that we shall not respond favorably to something someone else bombed with or vise versa.  

 

I think it's a good idea to check in on a fairly routine--at least annually anyway--basis.  This keeps us firmly on the mind and radar of our doctors so that when something great comes down the pike, we will be front and center in their thinking and top on their list of contacts!

 

 

 

Brad,  

 

I got my DBS in August and had a small stroke, so I am definitely an outlier.  I have not decreased my meds at all yet.  My tremor is gone, but all my balance and gait issues are still there.  I had only one side done, so that might be part of the issue as well.  I am also still going through the programming process and hoping that I will find a setting that will work well with my gait issues.

Did you have your stroke during or as a result of your DBS surgery??

 

My neuro's told me not to expect DBS to help a great deal with balance or gait issues, but that it would help with issues such as tremor and dystonia.  Also, it might help reduce the chance of tardive dyskinesia.  

 

I had bilateral DBS and, I agree, programming is a process!  In fact, I'd say DBS is only as good as the adjustment you get.  Do you have a remote control for yours?

 

 

 

Kim, I read an article in the past couple of days that said the duodopa pump might  become available in 2014.

I'll be keeping an eye out for it!

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young_dad    96

Kim, I had my stroke during surgery at one of the electrode locations.  I was fine right after surgery but as the day wore on, I basically lost the use of my right side.  I went to rehab and was back home within a week, but it was a scary week.  I do have a remote and have been cycling through the program choices.  We have tried 3 of the 4 electrodes so far with various settings and combinations. My programmer is currently climbing in Nepal (Mt Everest) with some Parkinson's patients raising money for stem cell research, but will be back next month.

 

My neuro mentioned that it is used mostly for tremor (which I had) but that it usually also helps with whatever the Sinemet usually helps with (which is my gait and balance issues).  I'm hopeful we'll find some better settings that will help with that as well.

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During my surgery, the surgeon asked me at one point what I was feeling... and I responded, "my face."  I had tears in my eyes because, for the first time in I don't know how long, my face felt normal--the muscles had suddenly relaxed--and, it had been so long since my face felt that way that all I could say were those two words, "my face."   There was a sudden flurry of activity and I remember the surgeon telling everyone he needed complete silence--people suddenly started checking things and tweaking things--and, my surgeon very calmly said, "Kim, tell me exactly what you are feeling in your face," and I responded in a quiet, awe-stricken voice, "normal."  There was a collective and audible sigh of relief in the room and, it was only upon hearing that sigh that I realized the level of concern my two words had engendered.  Everyone in the room--myself alone excluded--thought I was having a stroke.  

 

Clearly, stroke is a risk and I am most sorry that you drew the short straw and suffered one young_dad, but I am glad to hear that you seem to have recovered very well.

 

Kim

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Rogerstar1    385

Yes, I recall something similar.   I'd been 'put under' during the drilling of the holes in my skull and brought back to consciousness when the probes were being inserted.  The room's bright lights and so many people around me (G'town being a teaching hospital) I remember perfectly.  The surgeon's chief assisant began reciting 2.3, 2.4, 2.5 etc. The voltage was being adjusted and I was to report what I was feeling.  My left  arm, unmedicated was particularly stiff and all at once it became free and painless, as if a supernatural force had washed over me and I remember the surgeon saying 'o.k....right there'.  Six months later when going in for an adjustment with another Georgetown neurologist I chanced to bump into my neurosurgeon and that same assistant in surgerical garb in the public elevator and fell apart trying to express my gratitude.  Telling them how much indebted to them I was for restoring my life they both said only "no you don't {owe us anything]".   The elevator door opened and they were gone.

Edited by Rogerstar1
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young_dad    96

Thanks Kim.  I am still hopeful that we will find a setting that works well for more than just tremor.  Also, since I only had one side of my brain done, in a year or two, I could go back and have the other side done and see if that helps.  I at least know that if the tremor gets bad on my left side, they'll be able to do something about it.  

 

To tell the truth, after I had the stroke, my wife looked at me and me at her and we said "Of Course I had a stroke."  If you'd like to hear more about the stroke and recovery, I wrote it up on my blog which is not maintained very well.  It's linked in my profile.  

 

@Rogerstar1: I actually felt the drill going through my skull.  Not painful, just surreal.

Edited by young_dad

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New normal    1,275

Thank you, Roger....I got a little weepy reading this...I don't know why...maybe cuz some things are on the denial shelf...and suddenly they come to the forefront..

 

DBS is starting to be real to me. Tremors are exhausting.

 

Roger, you are in tune with others, I know.....

 

A good thread...

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SeanO    0

I spent last Thursday and Friday at Vanderbilt Hospital in Nashville undergoing testing to see how my disease has progressed since my DBS surgery which was completed four years ago this past July.  I thought I'd share the test results with my extended PD Family since you have all been along for the ride for some time now.  So, here goes...

 

Physically, I'm holding up pretty well, in fact, "holding" would definitely be the operative word.  I was in Stage II before the surgery and, as of now, I remain there.  My general PD symptoms (balance, tremor, etc.) were evaluated with my DBS switched off for a period of time and then again with it switched back on.  The disease has, of course, progressed, but the DBS has kept the physical changes I have undergone from making themselves too apparent in my body--because, so far, when they appear, a DBS adjustment usually corrects the problem.  At the time of my surgery I was on 600mg of Sinemet a day, now I am taking between 400 to 600mg daily.   My MDS scheduled me for another evaluation in a year.    

 

Then, there was the neuropsychology department and the cognitive functions testing--the thing I dread every time.  Mixed news there, but on the whole, I'd say relatively positive results.  There have been, as my neuropsyche doc put it, "some changes in your cognitive functioning."  Hmm... OK, what?  Well, it seems I am a little slower at retaining new data than I was four years ago.   Also, on the dot-to-dot testing (as I call it), I have slowed down.  This is the test where you are asked to draw a line in numerical order from multiple numbers jumbled on a page.  Then, in numerical and alphabetical order from numbers and letters jumbled on a page (1-a-2-b and so on).  Evidently, I'm slower at this test than I was four years ago.  

 

The UPside, however--and, the area of my greatest fear--is that I am showing, "absolutely no signs whatsoever of Alzheimer's or early dementia."   Well, I'll take dot-to-dot slowness over slowly going dotty any day of the week!  

 

In other areas of brain testing, I'm told I knocked it out of the ballpark.  The tester very kindly thanked me for being, "the most fun person" he'd ever tested, which I thought was rather nice, since I fear it can be annoying--I make jokes when I am nervous.  On the, "say as many words beginning with the letter "S" as you can in one minute" test, I gave words such as, "serendipity, serenity, sacrifice, synonym, and shale..." where most people, they tell me, list words such as, "sleep, sit, sorry, and seven."  The tester rather thought I favoured Royalty in "my name as many boy's names as you can in one minute" test, but really, George and Edward were my father's names and I have relatives to thank for leading me to James, William, Henry and so-on.   

 

My DBS battery is still going strong (currently at 2.94) and my MDS thinks I could get at least another 2 years out of it at this rate.

 

So, there you have it... pretty much, good news I'd say.  I'm passing the information on in hopes it will  prove useful to someone in some way.

Kim

Hello, Kim, and everyone out there.

I had bi-lateral DBS on April 3, 2014 with the power packs and the leads attached on April 11, 2014. I was at Stage 3, physically, before the DBS. After the second surgery, I was sent to an inpatient therapy center. But, no one, that I can recall, ever discussed this with me. I had no idea where I was, how long I would be there, and the purpose of my being there. My head was in such pain as were the two incisions on my chest for the power packs. I was miserable. I know that my neurologist, the neuro-surgeon, my family, and many of you, told me that the DBS would do nothing to help with anything but the outward symptoms, such as tremor, etc. But, I was so disappointed that this didn't help AT ALL with anything related to cognitive skills. I believe that I've regressed in this area. I understand that it's only been a couple of months but my scalp, the areas that aren't still numb, still are very painful to the touch, as are the two areas of my chest. 

I've had a really miserable experience thus far and, honestly, I believe I wouldn't do this again. Kim, I'm hoping and praying that this will all turn 'round for me and that my experience will be as good as yours. 

Regards,

Sean

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Sean,

I have tried not to talk too much about the difficult side of my DBS surgery for fear of discouraging someone who might otherwise do much better than me.  Also, I am keenly aware that we all respond differently to surgery, our diseases all have different nuances to them that impact matters such as DBS surgery, and we are all of different temperament and tolerance levels--so I wouldn't want anything I said to be taken as applying to everyone who has the surgery done.  That said?  Let me tell you... it took a full year for me to feel physically back to "normal" after my surgery.  The numbness at the side of my head and in my left ear persisted for several months.   I had only one battery pack, but the recovery from that was, for me, so painful that I was unable to sleep supine for a year--I literally slept sitting up in bed, holding my husband's hand for a sense of closeness. (I can well imagine how painful two of the little blighters can be!)  Then, there are the adjustments.  Sometimes, when there has been a change in my symptoms (probably because my disease has progressed), it can take several trips to my MDS to get an adjustment that actually improves things, rather than make them worse (which has happened more than once), or create a symptom that wasn't there before.   

 

So, fast forward five years.  I am on 4 pills a day now.  My battery still has at least a year of life left in it, and I have hit one of those times when I'm adjusted right in my "sweet spot," meaning that I have little to no tremor and my dystonia is down to a dull roar.  But, as I've said, it hasn't always been like that--in fact, there are times when I've been very frustrated and angry because I felt I was being treated as a guinea pig, not a person.  I can have an adjustment on one day, but it can take, sometimes, three or four days before the effects of that adjustment are fully apparent.  I get an adjustment to address numbness in my back, running all the way down to my big toe, for instance, and--two days later--I end up with a pronounced limp because my toes are now twisting up... I go back and they adjust again, in an effort to correct this new problem.  At first, it's perfect, the twisting has stopped and my feet are relaxed again... but, then I go home and, by the next day, I have a slight tremor.  This gives way to a full blown tremor within a couple of days and now, here I am back at my MDS having another adjustment.  After this adjustment, I go home and... within a day or two, my toes are starting to twist again when I walk.  So, I turn my DBS down one "notch."  My instincts tell me it's the correct approach, but I haven't gone far enough... so, I turn it down again. Then in a day or two, I turn it down once more.  Eventually, I've turned both sides down by three or four increments and slowly, tentatively, I begin to feel I've found the sweet spot.  I wait.  Days go by.  My feet are not twisting anymore, nor am I tremoring.  I slightly adjust my meds--raise or lower just a little--and, bingo! I've reached the "best I can get" place.  Not symptom free, but able to function reasonably well (if a little slowly).   This is where I am now and have been since about April/May of this year.  BUT... a few weeks ago, I noticed a slight tremor appearing in my right leg again.  (I am dyphasic my doctor tells me, so I am often symptomatic when my meds are at their peak, and when they are wearing off.)   In an effort to address this, I tried turning up one increment, but within a few days, the toe twisting was back again--I had to turn back down.  I am waiting now until the breakthrough tremor gets bad enough that a single increment adjustment will address it without giving me another issue--when that time comes and I make the adjustment, it could take my body anywhere from a few days to a week or more to fully settle back down again... And, so it goes.  This, evidently, will be the story of my life from here on in.  For me, it's trial and error, trial and error, and a lot of back and forth until, finally I get a result I can function with.  

 

Now, that's just my story.  Someone else, no doubt, will have a different DBS tale to tell.  To give you an example, the day I had my surgery,  I met another patient in the pre-op waiting room who was having the same surgery and who was, at that time, taking 36 pills a day.  I was taking just 6 pills a day.  After the surgery, she (the other patient) was completely meds free... but, I was still taking 6 pills a day.  I spoke with her on the phone about six months after the surgery and her speech had deteriorated a significant amount.  I was shocked.  I asked her, as diplomatically as I could, if she had noticed this and if she had tried turning up or down to address this.  She said that, yes, she had noticed and that it was annoying, but in the grand scheme, it was a small matter compared to all the other improvements she'd seen. Then she said, "Make an adjustment? How do I do that?"  Turns out, she did not have a remote control and she could not adjust her DBS herself.  When she realized that I did have that ability, she said she was going to talk to her neurologist the very next day.  That was the last time I spoke to her.  So, when I saw my MDS, I asked why one patient would have an adjustable DBS and another not--he told me, it was all to do with cognitive functioning--in short, they didn't give a steering wheel to a driver they were not sure could handle the car.    Just another example of two people having two dramatically different experiences with the surgery.

 

My suggestion to you: Be patient.  Where you are now is likely nowhere near where you will be a year from now.  The physical effects will have healed and you will have a far better handle on things and you will know much more about what kind of improvement DBS will have been to you.  

 

I hope my posting does not put anyone off DBS surgery or make it sound like more trouble than it's worth.  I further hope that it helps you Sean, rather than stresses you more. 

 

Hang in there, it's early days yet... the road may be bumpy now, but it gets better.

Kim

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graflexmaster    1,182

Thank you Kim,

It's good to hear the other side of the coin. DBS is something that's been on my mind for awhile, and most info/stories one hears, are all about the up-side of the procedure. It's good to also hear the down-side. Not that it would affect any decision, but I'm one of those people that needs to know EVERYTHING, both good/bad, up-side/down-side before going in. My primary symptoms include Tremor, Bradykinesia, Balance, Dystonia, and speech problems. I know that DBS probably won't help the balance/stability or speech issues, but my understanding is that it would help with the tremors/bradykinesia/dystonia, and if it could do that? The rest would be gravy...........

So yes, to both you and SeanO, I thank you both, for the courage to be open about the down-side of your DBS.......   

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