Questions about DBS...

Jefferson Jones asked some specific questions about the DBS process and I asked Beckie to respond at length.

Here is Beckie's response:

Hi Jeff,

We try to remind people all the time that NO surgery is without risk.  I'm pretty sure that the % of surgical complications in DBS is practically nil - compared to say that of open-heart, etc.  Not to say it doesn't happen.  I always say that when you can't live with the complications of your disease, then you willingly jump onto the DBS bandwagon! 

In retrospect, we now realize that there were questions we didn't even know to ask prior to surgery!  And in our experience, you don't always get told all the details .... I think because those in the medical profession are SO familiar with the details, that they accept all that comes with it as normal process - forgetting that all this is NEW to we patients (and family & friends).  That said, no question is too simple --- that's their job ... to provide the answers.  Your neuro team should be able to tell you what to expect as a normal process of healing.  Severe headache, nausea, fever ..... these are NOT good and should you experience these symptoms, contact your DBS hospital/ER/team immediately.

re:wires ---- I guess it stands to reason that relatively fragile wires can only withstand so much stress.  Everything we've read and heard has instructed us to avoid obvious activities like sky-diving, chiropractic adjustments to the neck, crazy rides @ Disneyland and your grandkids throwing themselves around your neck ..... just kidding about that last one.  But seriously, as Ken mentioned in his previous msg to you, the kids slamming against the IPG can be painful.  As far as the wires showing -- Ken is mostly bald and we have YET to have someone notice his DBS bumps & wires unless we point them out.  Since you have hair, I doubt even your family will notice once all your hair grows back. (good question for DR --- do they shave your whole head or just partial?)

I love that you are asking questions.  It helps Ken & I refresh our memories of our journey and hopefully be a help to others if we use our convos as a basis for future blog posts.  Along the way we have had the opportunity to attend several seminars for PD patients and have found them helpful.  If you haven't already, check out local & regional PD support groups online to see if they post upcoming events, etc.  We also belong to the Yahoo DBS group @  http://health.groups.yahoo.com/group/DBSsurgery/

you can subscribe directly from that page.

This group has a huge database of information -- the only caveat I generally issue is to use the grocery store method when it comes to postings --- take what you need & leave the rest, remembering that there are people posting from all over ---  some who've had great experiences -- some not.  I would add that for the most part, those who've NOT had good DBS experiences typically had surgery done at a hospital that was convenient to where they lived and advertised that they 'do' DBS, but in reality didn't have the history/experience really necessary. This is SOOOOO important to understand and something I ALWAYS  emphasize when encouraging people toward DBS:  the DBS surgeon/team experience/ability is as important as the programmer's experience/ability ---- if the surgeon doesn't place the probes exactly, then no matter how great your programmer is, you are most likely not going to have a great DBS experience and conversely, no matter how well the probes are placed, if your programmer doesn't truly understand what they are doing, you're not going to be happy with the outcome.  Bottom line: the place you choose for your surgery is VERY important.  The Yahoo group has an article in the database of FAQs --- it covers a lot of these types of things.

Phew!!!! that was long-winded!!  Hope you don't mind .... but there's nothing more important than getting all the info you can when making life decisions.

Be blessed.

Beckie Miller

ps:  if you'd prefer to email Ken/me directly, pls feel free @ ken.group20@gmail.com or beckie.group20@gmail.com

"My Final Answer..." (at least 8 - 10)

I know that's a lame title for this post, but it's 2:50am - I'm awake, my fingers are working, but I'm not certain my creativity is up to par.  Continuing with the Q&A ......

Q8):  What is the battery life of your IPG?
A8):  Three to five years relative to the amount of voltage output.  November 13th is my surgery anniversary ( since 2009 ), and I noticed that my remote control readout says my IPG is at 2.90v as opposed to the 2.96v it's been registering, until about 4 months ago.  What does that mean?  I'm not quite sure, but my doc at Stanford didn't seem worried about it during my last visit.

Q9):   What is the hardest thing to deal with about Parkinson's - physically?
A9):  Actually, over the past 6 months, I've noticed having difficulty swallowing, more coughing, and most obviously, the speaking issue.  My current inability to communicate effectively has taken a toll on our quality of life, and Beckie, my wife and caregiver finds herself isolated and frustrated.  I feel quite helpless most of the time, like Cher, my sentiments are, "If I Could Turn Back Time."

Q10):  My (relative or friend) has Parkinson's.  Could he/she qualify for DBS surgery?
A10):  Age, general health, mental stability and attitude all play into the  process of qualifying for DBS.  I was 55 when first diagnosed, had DBS surgery at 58 and have been quite healthy until diagnosis.  My attitude has been optimistic and my cognitive abilities intact.  If I were 75, with physical complications, I might not qualify.   Depending on your friend's situation, they may or may not qualify.  In my opinion, they should definitely check into the possibility -- sooner, rather than later.  **Beckie adds a footnote:  it's been our observation and personal experience that many neurologists drag their feet (big time!) in even suggesting - let alone being proactive - that the patient pursue the possibility of DBS.  YOU may have to ask for a referral --- and not take no for an answer.  What do you have to lose?

Bonus Q:  Is it true that smokers have a very low incidence of Parkinson's?
A: Yes.   They aren't sure exactly why, but it's true.  However, if you have PD, smoking won't make it go away.  (Even though some say it possibly extends the "ON" time in patients)   I've never smoked more than a handful of times in 60 years.  However, if it does give relief and less side effects than traditional PD medication, maybe................. What would you do?  Like I have often said if Parkinson's doesn't get you, the medications will.   (See my post from a year ago, Oct 13, 2010 about why I feel strange most often.)

And, Ladies and Gentlemen, on that 'positive' note, I'm going to try to go to sleep.  It's 3:58am and all is well.  (It's not, but let's say it is). 

"Night, night" he whispered - with visions of Peter, Paul and Mary on a late night infomercial singing distant strains of 'Puff the Magic Dragon..." followed by the Beatles reminiscing with "Yesterday."  (go ahead, sing along with me:  'yesterday....... all my troubles seemed so far away'  ....fading, fading, f a d i n g  ,  f   a   d  i   n   g  ..........  G' night John Boy.

Miracles DO Happen!

The fact that I'm posting again within a week is truly (well, kinda) a miracle...

Actually, I wanted to pick up where I left off:

Q4) How does DBS work?
A4) 

A battery-pack (impulse generator or IPG) was surgically placed under the skin beneath my collarbone. The 2 wires from the IPG are threaded together up the side of my neck and continue to the top of my head where they split off and connect to the 2 'Leads'.  (I had bilateral DBS-both sides - so the IPG feeds both.) The leads are wires, each containing 4 electrodes, which were strategically placed with the help of GPS signals (yes - really!) into a kidney-bean-sized structure deep in my brain called.... the Substantia Nigra.  Specific 'voltages' (from the IPG) are applied in milliamps to various combinations of electrodes to get varying results. Too much voltage can cause localized 'pins & needles pain' -  or a number of other unpleasant side effects. BUT.... just the right amount can optimize tremor and other symptoms.  All the wires on the outside are tunneled under the skin - so most people never even notice - unless I point them out.  That's amazing, considering I'm bald.  I guess people just think I have a bumpy head!

Q5) Do you have any negative side-effects?
A5) Yes, I do.
When I had my first neuropsych test before surgery, the doc asked me this question: "If you had the choice between being able to speak clearly, OR get rid of your tremor, which would you choose?" My response was, "Do I have to choose?" "Well," he answered, "there is a 60% chance of the surgery affecting your speech center in a negative way."

My answer to him was, "most of my life, I've been on stage - entertaining people with my voice. If those days are over, no problem. As long as I can play with my grandkids and hold them close, it doesn't matter if my speech is affected."

Today, I can play and intract with Leo, Vida and Tesla. Unfortunately, I cannot carry a normal conversation - even with my wife. The grandkids are too young to notice..... yet. But I must admit that Leo (almost 4 years old and going on 14) looks at me very strangely when my words get all confused. We're working on that. It a long, long road.

That said, however, I'd have DBS surgery again in a heartbeat - even with the speech challenge.

Q6) Why doesn't Michael J. Fox have this surgery?
A6) I don't know the answer to that question. He may not be a candidate because of prior surgeries performed. I'm only guessing at this point.

Q7) Is DBS reversible?
A7) Yes! When a cure is found, I'll turn my system off with no regrets.

As Porky Pig used to say, "That's all Folks!" at least for today.
I'll process more Q & A when I've recover from this round of typing.

Popeye put it more succinctly, "I've had all I can stanz ...... and I can't stanz no more." (the backspace key, that is.)

It's a great day. :-)

Kenny Wayne