Update
 

Blog Update
Scottsuf.blogspot.com

Scott - I saw your blog for the 1st time yesterday. Apparently I
repeatedly hosed my URL entry attempts.

I think I may have a suggestion or two when they get everything
straightened out for 'round 2.'

I can't remember exactly what they set the initial voltage to from
the factory. For purposes of discussion, let's say it's 1.5. In my
case, the value is currently at 3.2.

Scott, if you can convince them to let you leave the hospital with
an adequate 'ceiling' meaning that you can 'bump' up the settings
yourself, instead of waiting for your next 'adjustment,' as I was
forced to do, you can save yourself much grief.

For example, based on their advice, and personal trial and error,
if I had been able to do so, I would have increased the setting
by 2.0 each day, until sensing significant relief. I think you are
already aware that any such sensation is short-lived, or at least
it was for me. It usually 'healed' in 2 weeks or so, leaving me
quite miserable for the next 2 weeks, until my next appt.


David

scott, a starting point for reducing surgery infections
 

15 Ways To Reduce Your Risk Of Hospital Infection

much easier said than done when if you ask questions or make demands to people who are highly trained but mistakes are made and surgeons/nurses have bad days sometimes.

boy, if you have a friend who is a surgical nurse ask her for some advice.

i was lucky that a person i was sitting next to in the neurology clinic happened to have worked as a surgical nurse for the neurosurgeon who was assigned my DBS operation and she raved about him.

it's your life and pocketbook.. best of luck.

David,
I had been through the turn/initial programming before infection was found,and they were going to let me have some range in the settings to adjust.
Appreciate it

I think about all of these steps was performed. Just wasn't my day.

thanks & best wishes to ScottSuff
 

Dear Scott - thanks for your experience with DBS. As the daughter of a PD patient who is cautiously considering the procedure, learning about your experiences has been very helpful. Very sorry to learn of your setback and sending you best wishes for a quick resolution.

Please Advise - When Will It End
 

Guys & gals - I am concerned - I don't have any idea how long
or far this will go on.....

Right now the electronic box in my chest is set at 3.3, I think :)

There has been a 'cycle' of sorts that results in substantial relief,
temporarily, each time the doc raises the voltage setting by .1
or .2. My concern is how long will this go on before I run out of
'room' (I understand that the overall limitation on the Medtronic
unit is 10.5).

I mean, at this rate, I'm going through a .4 - .5 increment each
month, or 2-3 weeks, just to get relief of the minimal sort.


Thanks -
David

David -- A great person to ask is Dr Okun over on the Parkinson.org forums

Attended a Medtronics meeting, and went over my settings, frequency, pulse width, impedance. Current settings I'm good for five years of battery life.

DBS Battery Estimator >> Center for Movement Disorders and Neurorestoration >> College of Medicine >> University of Florida

In 2010 is when the Activia Line came out. Titanium Case, so EMI is not an issue like earlier generations. So I can use arc welding and TIG welding. Ya!

Group meeting, so had chance to talk with someone else, retired M.D. who has Parkinsons and was also dealing with Gastroparesis Thankfully when he was first hospitalized a Neurologist realized it was due to Parkinsons, and he responded to Sinemet, saving him from a J tube surgery.

Scott -- sending you wishes for all the best.

Scott - Thanks for the info. All this stuff is so confusing I probably
didn't do a very good job of asking the right question.

I think the current box has a ceiling of 10.5.

I'm currently set to 3.3. Not really concerned about battery life.

What I am concerned about, and if someone could tell me why I
shouldn't be, that would help a lot!

Is - With an adjustment appt. approx. once a month, and with the
typical increase of .2 for each appt., it appears that I would be 'bumping
up' against 10.5 very quickly. Surely they're assuming that most people
wouldn't need an increase close to the above for every month of the year??

Hi David,
Perhaps get neurologist to give you a range you can use and that isn't too great that you can get into too much trouble with?
I think D.I.Y. is a much gentler and far more convenient way to go.
I might go up but only by 0.1V at a time then give that setting a few days to notice any changes as thats how long it often takes.
Then you might want to try 0.1V up or even find you were better off on the setting you had it on and go back to what it was.
I doubt the settings will go up a great deal more as too high can mess with you mentally as well as cause you to physically feel worse.
I agree with you about battery life the main thing is that you benefit from it.
Good luck

I agree with Made It Up, but I'm new in this game of tweaking neurotransmitters, but everyone says it's a long term game of adjust today for results in a couple weeks.
Good luck

Go, Scott!
 

This is all fantastic news, Scott! I'm not so happy about my weight gain (30 lbs) as you are with your 20-lb. gain, but I need to get started on. Healthy diet anyway.

So glad the infection worked out.
Praying for you. Oh, and I had no idea that you had been a lurker for so long!
Peggy

Update
 

Small update to blog
Fighting infection
Scottsuf.blogspot.com

Hang in there Scott....

Well....
 

And to think that I had it bad. Ha!!!!! I honestly think
that what most potential DBS'ers can glean from all of this
is that the chances are ridiculously high that they will never
have to go through what Scott went through. Thank Goodness
for men like Scott that have the courage to take on something
like this. Yeah, I went through it too. But, looking at Scott's
facial expression, I would be the 1st to admit that man could
kick my *** quicker than I could pop another Sinimet!!!

I've had DBS Mar 2016 and already my battery needs replacement! But I don't regret it. Of course, an infection is more serious! They say scratching your healing itchy wounds is a big infection risk. Thanks for your blog and thanks for your RSBoxing tip. I found a class 45 min from me and it is fun bring around other Parkies. May you be healed soon!

I'm glad you joined a Rock Steady group. I can't work out with them yet, but I can go have a brew with them after class on Mondays! We're supporting each other.

I truly hope and pray that nobody has to go through what I have in the last month. As for the facial expression I was in my happy place! Lol!

I'm trying!

The lower setting the better as my high settings caused rapid depletion of battery and maybe my balance issue. Left as on 4,8 but went down to 3.5 after new rechargeable battery. Right on 4.3. Two sides on 1 battery. Rech. is nuisance at first but getting used to the 30 min time to recharge. It is supposed to last 9 yrs...we will see. I was worried that my battery would go dead before surgery as I had to wait a month...but they build safety time within battery. No big deal for surgery this time ...outpatient and only sedation. On no meds as nothing works for me so maybe that explains the higher settings. Still worth the trouble and expense! Hang in there!!

Hi Scott - Want to apologize for not checking on you for
a while - we sold our house in Kansas City and subsequently
signed an apartment lease. What's the latest with you?


David

This pretty much says what I've been up to!lol
Scottsuf.blogspot.com
Seen the surgeon today,will probably try again April.

Re: 24/7
 

Scott - FYI - My wife is bawling her head off thinking about
what you've gone through compared to what I went through,
which was nothing.

I may not know you personally, but there isn't an ounce of
doubt in me regarding how tough you are. So, my friend,
please don't any of us down, including my wife. You WILL
get through this. If anyone has a clue as to what you're
going through, it's me. Think about the near future, less than
a month from now after, the redux, when you can dress almost
as quick as when you were a kid. The days when you could
a leg over a Harley and kick-start the damn thing, the mornings
when you could shave and shower in less than half an hour.
Remember those days? I know you do. Don't let us, or your
family down, Scott. You're so close. I know how sick you must
be of all this medical crap. But, this procedure really works.
And when it works, man, does it work. The sweet Lord knows
that I'm living proof -

In the meantime, let me know if you would like my phone #, and
if it would help, I'll be available 24/7.


David

hi bluesking, sent you a pm
 

i could use a pep talk on dbs

Thanks so much for the encouragement! I won't let your wife or mine down. Lol

Quick update
Scheduled
Scottsuf.blogspot.com

Scott,
Good to know there isn't a higher chance of infection on subsequent DBS surgeries. Excellent comparison of filling holes in your head with repairing drywall or a fender on a car, made me laugh....Hang in.....

Best,
Eric

You do have a top notch hospital and drs! When I had to scratch I used a clean sandwich baggie as a barrier each time. I know you are not supposed to scratch. Also, you may consider taking a green probiotic drink after all the antibiotics. Found in health food places like Whole Foods.

How goes it Scott....hope you're recovering well.......

Eric

Going pretty good, the fun starts again soon, update coming.
Thanks for asking

Bloog Update
 

scottsuf.blogspot.com
Round 2 *Ding!Ding!Ding!*
Update

Scott,
Glad to hear you are doing better and pumped for round 2 which will be successful...sorry to hear about your daughter, very frustrating for both of you...she is so full of life inside and out...maybe she could reach out to someone like "Ellen" who is a very empathetic person that has a national following (or a news show that might get picked up nationally) and might accept "The Mandy Challenge" to get her diagnosed properly and treated properly...there must be a doctor out there, maybe in a different region who can get this right.....You are right Scott, she is a much better writer, but you will have many years to improve after your DBS!!

Eric

OK, Scott, this is the last lap of LeMans....

In the stands are your 2 daughters, and your wife, cheering you on.....

You've got a 1/2-lap lead, all you need to do is maintain, remember
that word, maintain.....

You know that finish lime is just ahead, the one synonymous with
you feeling JUST as good as I do.......

As you veer onto the straightaway, slip the tranny into 7th,,,,'

Hold on Scott, Hold on.....!!!!!

Yes this is Stage 1.2 because this is my second time around for the 3-part DBS

procedure. For those of you that just joined my saga and don't want to go to the beginning

of the story, I'll give you the cliff notes, but I urge you to go back and read from the

beginning. Then follow through with a mouse or finger move (depending on your device

of preference) to my daughter's blog thechroniccaterpillar.com. (which I mentioned in my

previous post). I've already receive confirmation from several of you that Mandy is a

much better writer than dear old dad.You don't have to abuse me though! Lol

Review

Diagnosed December 2003. Thought I could beat this disease by myself with exercise

and nutrition. That helped, but I figured out that I'm not in control here. God has a plan

for me and I need to have faith in him that all will work out.

I've been on the PD scene for over 14 years and have taken most mainstream drugs to

control the symptoms. That's all just control, since there is no cure. Some I could tolerate,

some I couldn't. After the first 10 years of being inconvenienced, I found the

"honeymoon" to be over and started to have struggles in daily life, such as drugs wearing

off, hard to get "on", rigidity , sudden offs, etc. If you google Parkinson Disease

symptoms you'll get a list of motor and non motor symptoms and chances are I've had

about all of them at one time or another. Symptoms come and go, and affect all of us

differently. That's why they call it the designer disease, no two people are alike in disease

symptoms and progression. So I find myself down the one way road having used up

most pharmacology options and I'm only 57 years old. In PD years I'm about 90. Don't

know about you, but I had planned on being around a while to see grandkids etc. Still got

some living to do. I had a doctor mention DBS to me a couple years ago and I was

like "no way am I going to let someone drill holes in my skull and run wires into my

brain, while I'm awake even." I remember the doctor at the Mayo Clinic, Dr Rubino, who

after two years of tests, and doctor's blind eye to the Parkinson's, told me I had

Parkinson's and that since I was young, 42 at the time, to consider DBS down the road. I

find myself down that road.! I decided to go to Vanderbilt Medical Center to see what

they'd say. After testing to see if I was a good candidate for DBS, they

deemed me a very good candidate and put me on the schedule. I complete the three stage

procedure.

I. Bone marker
II.Lead insertion
III.Nero Transmitter insertion

I completed the entire procedure at the end of 2016, and go to have the device turned on

after healing for a month, just to find out my body is rejecting the hardware inserted in

my body, I have an infection! I found myself in surgery several hours later having the

stuff removed. After five days in the hospital I was sent home with a picc line in my arm

and instructions to self-infuse for three weeks. Two rounds of antibiotics daily. That

wrung my body out! What's next? Have my options changed? Has a cure come along in

the last three months? Something to slow the progression?

Why hell no! That takes me to yesterday, Tuesday, March 28, 2017. Scheduled for 10 am

Stage I. I'm up at 0430, (that's way early for you non-military types) and drive to Vandy.

They are very good at what they do at Vandy. It's an industrial body repair factory. The

procedures are the same as last time. Checkin, register, get the ID bracelet to become a

member of the club, and wait. You don't wait long. Inefficient factories don't stay around

long in this day and time. I go to bed number two, put my gown on and get under the

sheet. The surgical team comes by two at a time to introduce themselves.

I had the same anesthesiologist as last time. He kept saying "you look so familiar". Say

bye to your significant other and off you go to the 48 degree operating room. You can

pretty much hang meat in these rooms. I have a student anesthesiologist trying to get stuff

set up and her instructor is grilling her with questions at the same time. I'm thinking "let

her focus!" The instructor says since this patient is skinny he'll only need this much

sleeping juice. I've never been called skinny in my life. What's up with that? She gets her

act together and I breathe some oxygen for about 20 seconds, then I feel the familiar

surge of sleeping juice (my name for it) surging into my veins from my IV and I say

goodnight. The next thing I remember is the nurse in recovery is calling my name. Leave

me alone, all I want to do is sleep. They want you out of that bed because someone is

right behind you, to be sure. Don't get me wrong, if you need to stay there because of a

problem, you'll be taken very good care of. I was able to suck down a couple little cups

of apple juice, got dressed, the nurse said I could walk out or be wheeled. I had just had

my PD meds just a few minutes before and could barely walk, so I took the chair. The

free Valet is a great service that Vandy offers. They must pay those guys well, because

they say no tips. They're fast, friendly, and free! What a deal! I digress! The car is

brought up, I slide in the passenger seat for the three hours and sixteen minutes ride to

the ridge. Stage 1.2 complete.

I felt pretty good till later in the evening. I had a ringing in my ears that I didn't pay much

attention to while at Vandy, but it was disturbing enough for me now to email the

surgeon's nurse. It was like the morning after a Van Halen concert by the speakers kind of

ring/roaring. A muffled ringing! They responded quickly with a "we don't know, we

didn't go intracranial, maybe due to the anesthesia, give it some time to see if it

improves." I'm glad to report I think it's going away. Also last night as I was lying in bed,

I felt a little trickle of something on my forehead. I got up to check and my left front

screw had started bleeding just a little. My full-time teacher, part-time nurse for a wife

went into action with gloves, sterile wipes, and ointment to save the day. You can see in

the pic they both are a little puffy. Other than those two little things all systems are go

and just waiting for the next round of fun to come. Stage II! I can hardly wait.

SCOTT,
when is the lead insertion scheduled? are they going to try to reduce the infection risks any differently than the first time such as more frequent blood tests, taking your temp?

They haven't said. I guess thats a good question

Stage III update
scottsuf.blogspot.com

Where does it hurt, excellent......Excited for your turn on day......

Eric

Update
Scottsuf.blogspot.com
Done Deal

i for one really appreciate hearing your story, i think it should be required reading for anyone considering a DBS, they need to decide if the risk is worth the reward and if they have the resources and support to deal with the possible problems you encountered. i know i'm deficient in both categories. thanks again!!