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!!