my friend i'll never ever
never forget the tests i had been
subjected to
NEVER no one should
be brought to tears
is anyone kidding
emotions
oh my goodness
trembling a thousand times
bring on the laughter

someone who cares

Failed Reprogram
 

Unable to make a new good program today. I had a rough day with existing programs yesterday after big Wednesday (6 miles of walking)- legs felt bad.

Saw Medtronics rep for a full hour today. She was unable to reprogram it. Every attempt was too strong somewhere - too weak everywhere else. :confused::confused:She is pretty certain that L lead is midline. R lead is right. Making optimum coverage of both legs impossible. My best program ends behind my knee and my pain goes up the hamstrings. Also, just not covering lower legs as well.

Wish that had been a tunneled trial!!!!!!!!!!!

I did this for increased functionality first and less pain second. I aim for KZLrogue power and nothing less.

Now, unless things changed, I fear that I might be headed for a reop. After tasting solid gold with trial - never feeling burning & exercise biking, bronze just isn't the same.

Who knows, I may be a paddler? I don't know. It helps some, but not da bomb.

Taking my kid camping tonight with his class, so taking it easy today!

as you take it easy also

enjoy your family

someone who cares

dang dang dang
 

MD,
I am so sorry.
Such dissappointment and yes perhaps another surgery.

It is good to hear your rep spent so much time working with you. Good reps are hard to come by.
My paddle is at T4 T5 and I get coverage down both legs to my toes up to my bra strap line.

Mothers Day ans a camping trip...way fun...You have been looking forward to this trip....Enjoying those boys and laughter. That will lighten your spirit and release some healing endorphins.

all my best
Hanna

Good camping trip
 

Scs helps. It helped me be there for my boy, so I am appreciative of that. That being said, it is nowhere near as good as my trial leads. I am not really afraid of another surgery if that's what needs to be done - just annoyed at having to jump through hoops again. Thanks for your support.

dear MD
i cannot say i am jealous
as i am not that person
to hear you were there for your boy
steals my heart
my freshman has a performance
i cannot be there
and the tears are rolling
i am very afraid of any
kind of surgery
3 in two years
i am done
cervical 5/6-6/7
neuropathy is killing
my hands and feet
bruise inside my extremities
within hours
i feel my hardware
especially upon my swallowing
until meds kick in
oh do i hope you relief
forever
in my gut
my doctor failed me
and started up my cancer
to become active or progress
even quicker than quick
still never called me or
released me as a patient
go figure took a breather
from him so i could remove
my breasts
no more surgeries
i wish you happiness
and a pain free life


someone who cares

Well Hey MD!!
 

Despite these challenges, so GLAD :D to read you had a good camping experience with your kid. Hope you went someplace fun, like Yosemite. :)

Sorry that reprogramming is NOT doing the needful thing for you. HOW I WISH they would just allow you a "touch" on the computer controls as you are hooked in at a reprogram to see whether your viewpoint from the inside might intuitively provide you a better result! Gee, I wrote a short article for a medical journal for my doc so he could try to get it published, and it has not seen the light of day.... but it was all about giving the patient a programming controls try to manipulate the signal since the patient FEELS what is right or wrong as signal is tweaked. If it is doable successfully, patient has the "inside" track. :) Oh well, I have beat that drumhead until it broke through.....

It sure worked for me.

Hoping something good comes your way soon so you are handed a better slice of life!

Yup, :)

X-ray shows my problem
 

2 perc leads one anatomical midline one right. Too close to each other - A couple of the contacts may be touching - therefore leading to a current arc without stim. It explains everything that I have been feeling. Feels like i am trying to surf a tough wave to use functioning program - its off balance. The midline lead alone doesnt cover pain. Meeting with a more local NSurgeon Tuesday. Hoping for a paddle! Big day yesterday 5 miles walking and 5 hrs standing. Hangover today. Hard to learn to tone it down when your personality is just not a sit around type! Will have to work on that.

good to hear
 

MD
happy that you have a diagnosis and a plan...

I hear ya about slowing down...I try not to do two days in a row of overdoing....helps me.

all my best as I read your journey
Johanna

Paddle Time
 

Saw the local expert neurosurgeon. X-ray reviewed with him. Medtronics rep there to confirm inability to reprogram. The leads are too close: one midline, one right, and some contacts touch and short out. They can only use programs with individual leads, so I will live with program "B" for now. So a laminotomy and paddle in my future. Hopefully middle June. Until then, I will live with the busted TV set in my back! Thanks for your support to everybody!