Permanent on Tuesday
 

Set for Medtronic Adaptive Stim likely with dual octad leads next Tuesday. Part of me curious about Bos Sci dual 16's that were just FDA approved, but the Medtronic trial was so good that I don't feel highly motivated to brand shop. My guess is that there are stories of poor IPG's and issues with all companies. Hopefully I don't wind up with a dud.

Where are your IPGs? I have a low belt line and small "love handles" above so hoping to get it shoved in there with a short tunnel on my back. Don't know if there is quite enough "meat", but I saw a photo on project 3x5 tumblr with that same placement and that woman is thin (& not unattractive). If it worked for her, then should be ok on me. Hard time getting psyched about sitting on the thing if the Pain MD wants to tunnel that way.

Just disclosed my situation to a few people at work. One of my colleagues from work / old ski buddy inferred RSD. I said yep. His eyes grew wide. You see, my people have heard of this beast. I told the others "bad neuropathy" and let em guess. I'm guessing that my IQ 150 boss has already figured it out. They were all shocked. It is amazing how easy it is to cover up something this hardcore if you are committed to doing so. I told my boss I said nothing because I didn't want to be on the radar unless I earned it. He now needed to know. I don't want everybody to know about this, so with help of friends trying to create cover story. As we all know, pain patients have a stigma. I suffer. No analgesics save motrin for headaches. Unless you fell off a 60 foot ladder or got pulverized in a car like Marc56, most people can't get it. (Ironically, my tree collsion was at Vail, probably not far from his crash.)

Freaked about 2 things:

1) that the permanent will be placed just right like that trial was
2) not to overdo it after - my functional status is high - high enough that people don't know. I think the only thing has changed is that I am not Mr. Mellow / It's all good anymore. With CRPS, it's not all good! I am going back into a non-desk job. Not serious labor, but maneuverability is required. Off work for two weeks and seriously paranoid about the BLAST deal at work. My MD says bend at hips / knees. Kind of freaks me out. Trying to generate a mellow schedule for myself, but it will be tough.

Also, my boy's school camping trip is 10 days post op. I will go hell or high water. Last year I went on this trip and "was normal" - that was the hardest 2 nights of my entire life. I flared so badly by standing / hiking most of the day that I felt like my brain had been plugged into the wall socket! Luckily there are cabins with cots at the site that I will use. My boy can stay in a tent with buds if it bums him out too much. If I can get good coverage in legs, it's worth a pain in the handle!

Hi MD

Honestly, I really only understood about half of what you said. It's not that you didn't make sense, it's just that with all of these narcotics, I don't understand or remember things like I used to. So, with this in mind, I can really only say to you - I wish you the best of luck and hope that your implant works at least as well as you expect it to!

Ummmm
 

dear littletexan77

it is sad when on so many
meds you begin to forget
many things
robs us of that being
the pay off for PAIN
oh how i relate
post-it have become
a good friend
along with a journal
that keeps me sane
wishing all the best

someone who cares

Restrictions
 

Thanks for the advice. I live in a major metro area in California, but choose to head south to LA b/c he is the most experienced scs guy on the west coast. He is also outta contract with my insurance, but heck this is a big deal - what's $$$$ when your health is on the line. He has done like 1000 implants. My disease isn't confined to one limb and he covered both legs so well with trial that road biking moderate ?20 -30 miles isn't unrealisitc for me. He is a bit lackadaisical on restrictions though I think. He was like 2 weeks off is fine. I think I will just need to be really careful at work the subsequent 6 weeks. I have been practicing getting onnmynknees with an totally vertical back and it is hard, but can be done. My scheduling coordinator is going to keep me out of bendy high turnover cases. If i brace my back, I should be able to safely handle the head during patient transfers. Must use the bed controller and ask for help from RNs. Hard thing is if I say back surgery, that will lead to questions i don't want to answer - as long as I can keep this in the down low i will. Only advantage to being outed is people would stop asking me for advice about helicopter skiing and such! Better to not have people know save a few friends though in think. I can only think of my reaction to hearing that news about a colleague - i wouldn't hold it against them, but I would be like holy $/##! That's crazy.

watching your progress
 

MD,
I am so thankful to have your posts....I am so curious to see your take on recovery from a MDs' perspective.

First let me get this out...BLAST...this is how I remember to practic it.
No Bending
No Lifting
AND
No Stretching
No Twisting

Back to my interest...I also have a Medtronic adaptive Stim implanted march of '12. It has performed beautifully. It had a bit of stuttering as the battery settled in and also my remote failed and Metronic had a replacement to me in 24 hours. I went thru a series of three reps over my trial; implant and follow up. I still do not understand the thing. At trial I had 100% relief of nerve pain from MVA @ L5/S1.Not so with the implant. The SCS has caused much more pain for me than it has releived.
During the trial I rolled in bed and felt the lead inserted at S1 sort of do around about....I knew it was moving and I felt a sharp snap and was very frightened...I repositioned and went to sleep....from that point on I have not had the severe wretched constant ain that I was doing the trial for.....now...what to do...what to do....the pain was gone....the implant is scheduled...I went ahead with it. Does it work for me...well it soothes me as I like the sensations...I use it at night so I can go at least ten hours without meds...during the day I cannot function without the meds. I regret getting it .... it is placed at T4/T5...I could only return to work at 100% capability so I too had many co workers cover for me...I had severe pain lie a runners stitch across my back along my bra line which left me now without the use of my arm strenght. I quite work 5 months later just to finally allow recovery...now 7 months after leaving work and I am finally feeling like I want to live along with knowing i can handle this in my life.

oh yes...may battery is in my R butt cheeck/top R quadrent and while I am aware of it...it does not bother me in the least.

Sleep...SLEEP....allow healing...allow others to help...
I intend all the best on your surgical journey....know I am following with my thoughts and prayers.
Please let us know how you are when you get to the other side.

The Borg and assimulation comes to mind(Star Trek).
Johanna

oh plz excuse this trickykeyboard...c what i mean!!

anything you are willing to share
is the only way with a few other ingredients
to make a informed decision on what to do
and for those who have have had my PC doctor
sends me for a pain pump
i personally opt out if you want me to elaborate
just ask
anyhow
thank you for sharing
it is valuable information
personal information
some choose to hide
from the truth
most times it is the doctor
again if you want elaboration
i would be happy to
my your SCS venture
be successful in every way
keep that log
i agree as my surgeon
and more than 90% of
them are out-of-network
what are we to do
i needed the best i could
find trust me
oh how they make
$oney hand over fist
are either fraudulent
in there practice
i am maimed
and things are getting worse
my pathetic list of problems
as more and more added
since 3/11/10 1 acdf 5/6-6/7 cadaver bone plate 6 screws failed to fuse
and 4/15/11 pcdf fused with severe problems since hematoma started
the moment i was closed up i was drained by my surgeon before i was
released
and 1/9/13 double mastectomy cancer in right breast
all in two years
in this all my personal experience
listening to my body
no doctors listening to me
while having to deal with my neck
i tell my doctors
something underlying is going on
in my body no one listening
well i found my lump
a woman who has her mammo
every year just before turning
40 years old and at the same facility
so much for quick reply

i wish you the very best

someone who cares

the journal idea isn't a bad one, but I'm just not sure I care anymore. Thanks for the suggestion though

Delayed
 

Hb- thanks for the input. Aware and wary of significant potential for buyer's remorse here. It's a dice roll.

As i am driving to la the asu calls and lets me know my charge. They preface the conversation by saying "we worked really hard for you" ok time to worry! We will be charging you $12,500 for this. This after $2500 for trial. I said hmmmm - my out of pocket max is $8000 per year. You are in contract with my insurance company and trying to balance bill me for $7000. Don't try this on a MD who knows the system! This means they have probably screwed countless patients. Complaint to my insurance company will be followed by a letter to state insurance commissioner. They had 2 options - say no to the case or accept contracted payment. There is no middle ground in this - not like negotiating a car price. Meanwhile, I have to wait for or time at ucla which probably functions like more of a Borg, but I know they won't try and overbill!

thank you for sharing
and not putting up with turd
it gets quite stinky here is where
a journal helps persons like myself
good going and good continued
success in all your endeavors

someone that cares

Rescheduled
 

Ucla on Wednesday. No illegal pricing for me! Worth a days wait to not have to chase $7000

Post op day 1
 

6 hr drive home after surgery was not ideal, but necessary evil as my dad had to get back to work. Found that Percocet and narcotics in general don't really agree with me. Placement took longer - probably 1:20 instead of 0:20, but we got it covered. Stood and walked around house 2 hours today without any real pain. No big walks for a bit though - the tunneling / ipg area hurts in a "normal" take it easy kind of way - not the crps take it easy and pay the price way. Thanks for your support!

Rest
 

REST REST REST! BLAST BLAST BLAST!:D
I know you know the drill, but did you eat before you tried the Percocet? Most of my patient have "trouble" taking it on an empy tummy but even with a glass of milk and a few crackers are good!
:hug:z n:smileypray:

Post implant blues
 

Thanks for percocet advice - i have taken some at night and that has been ok. Real deal not the home run that trail was. It helps, but not covering as well. I have some uncovered patches. I feel down. Probably from being off work as it is part of my routine to keep me glued together psychologically.

My 7 yr old boy is a sweetie - his wishes are just the same as mine - for a time machine to stop that ski accident. It is much more real to them when tou are bandaged up. The subsequent denial i developed and misdiagnosis by a neurosurg and the downhill slope that followed. My wife and I have a 7 month old girl - I have had real trouble bonding with her and hate myself for it. She is adorable. My 5 yr old is having behavioral issues, no doubt partially in response to the strain I am under. I try, but the burning of the face, back, ghosts of it on my arms / hands even when off my feet - it is hard. I read to them / play, but feel like there is no solace out there. I just want the best for my kids, but now it ain't easy delivering. Thanks for listening.

hang in
 

I feel from your post that 3am all alone; quiet safe space where I let my vulnerability to the surface. For me those times are very revealing...when all my guards are down.

My opinion is that all the swelling and surgery pain are not giving you a true evaluation of the SCS performance. The battery will settle in and remember the scaring is part of what is holding leads in place.
The stage you are in is the healing and only you can facilitate that. It will become a large factor determine the final out come.

Have you noticed how we all harp on BLAST :deadhorsebeat::deadhorsebeat: We know!! We are the "harppiies"!!

Giving your kids the best is giving them you. I am going to be bold and give advice...

Let the 7 yr old lay next to you...close your eyes and both of you go skiing in your minds...talk outloud about it...see where it goes in conversation.

Let the middle one know he is special because he is in the middle...let him read to you. Dedicate time for him.

Girls are different and hard to get to know anyway..even as babies...get her on even ground away from her frills...bring her into bed too with the boys. You have given her two big brothers...she will be just fine.

Go easier on yourself MD...chronic pain readjusts your mind.

Sending gentle shock waves of healing light.
Johanna*

ps...I would get stronger meds...ain't nothing like sleep to heal.

Dear MD
 

OK, as the author of BLAST and a little d doc [my doctorate not in medicine :) ] I am gonna harp on like the others here who are so CARING about your following BLAST......

DO IT

If I could write that on a script form and hand it to you I would..... but the notion is there. If you want to heal and heal well, BLAST and rest are vitally important. Stay away from throwing bales of hay [need I say RRAE?]. Do things you know from your own practice are sustainably necessary to hit the middle road between lurching headlong into practice and healing from your "walk in the park."

My healing has gone very well. I am THRILLED at being away from the pain meds. Now I am experimenting with ramping down on the SCS use.... some... baby steps.... you know?

I CARE just as the others here care,
and I pray all will be well with you, :hug:

dear friend
your main concern to be there
for family especially when you are it
as it is in my case
just that worry is enough
to drive me nuts
i am at a place i never
been in my life
the last of my children
my 15 year old daughter
things were going south
quickly as i was it all
blessed you are the partnership
and a wife who i pray can find
a routine in this all
the kids do need forever
the guidance and the assurance
you are there i reading time
a very important practice as
this is what i now do with my
granddaughter
praying a happy good return back
who you were before the accident

someone who cares

You know what they say ;o)
 

MDs are bad
 

I am not really religious, but amen to that. We are Terrible patients. Part of why I am here Denial! Today surgical pain abated 50%. Watched a soccer game and picnic - 5 hours on feet doing well with minimal pain. 1.5 mile walk with son to get dinner. A good day overall. Buzz is better than burn. Nice to have conversations without pushing burn cognitive effects outta my head! Tired though. In do everything with a vertical back. My preschool teachers knew - 5 yr olds talk! They are like "so, you have an internal Tens unit?" noticing my posture. I said yeah - something like that. Then spent time negotiating possibilities with 7 yr old e.g. could I help him boogie board a big wave? No. 2 footer in 3 months - probably. Right now I just blast! A hay bale - what is that 40#? Good thing we don't have those in the city! Thanks for your support. Really helpful.

As it is the truth
 

Amen! Amen! Amen!

Religious? What is Religious?
 

It is far more important to me, MD, that I have Faith. Religion is man's creation in an effort to reach God en masse. Go to church? Yes I do, but the Faith is the far far most important piece.

Maybe, my friend, I should take you up on a lonely mountain road one day and talk you through an experience I had there which is recounted in and among the woven strings which became my thread. Oh yes, there be faith in such a ride......

Now as to you, well, your thoughts and your relationships are your own to enjoy and savor.....

So, how about this? May you have mountains of Blessings in your relationships!
Uh huh,
and ifn you make it out of a city sometime, stay away from hay bales.
Yup, :grouphug:
BLAST!

Faith
 

I never needed faith until now. Hard work wins professional success and has kept me highly functional with the beast, but it takes a huge toll. I never understood faith's true utility until presented with this challenge. I was raised atheist and call myself agnostic because i can't prove it either way. I have been to church and have no problem with it, but my faith is internal. I am here for my family as best as i can. I do the same for my patients. Jeez, i have done probably 1500 cases with no significant complications since crps. Pain leads to hypervigilance at the workplace. That gets very tiring. I did this SCS thing to keep working and hopefully have more left in me for my family. If i get back on the exercise bike and can crank it at 75% of what i used to, endorphins will lift me even higher - i am waiting on that one! My kids don't need me to run like the wind, but they need me to be there in body and mind.

And
 

In body, mind, and spirit, these three may you gain the perspective with the performance you and your family need for a fulfilling life. It was in this acknowledgment of reality each of us live that I started the Blessings thread, for despite the walk, background, belief or not, there is a single common thread all of us may freely acknowledge....... namely, blessing.

When you can aid patients in the throes of trying difficulties they face, regardless of their background, you are blessing them and receiving blessing yourself - as you and your family are able to sustain life needs from the earnings. When you can crank the bike at even 60% of your prior endeavor, you know blessing, for the body is still functioning. When you are able to lope, not run as the wind with your children, all of you know blessing, for in this you experience mutual joy.

I, for one, experience blessing each day I am able to wow clients and others with my thoughts in professional practice because that is the stuff of what I used to accomplish nation wide in the business world. The reach is a bit more restricted now, and I do not fly in the private jets I once used, BUT I know blessing to be appreciated professionally while my family experiences a partial restoration of the revenue I used to be able to generate. NO, I cannot ski schussing the slopes in grand S fashion with my children any longer, even so, we are able to share times together talking and enjoying one another's presence.... blessed. Despite I no longer have feeling below my knees due to whatever conclusion the medical minds pronounced.... nerve damage or peripheral neuropathy [I have heard both], I am able to mount my cane on my new mountain bike [a Specialized brand with the shock absorbers and such ] and ride almost like the wind, because I am able to pedal through all 27 gears and it is marvelous..... a blessing to feel the wind on me again.

Thus, looking at life from a perspective appreciative of blessing bestows on you and those who Experience you, a feeling of well being. For me this is also a spiritual happening, and with you, it is going to very much be one of those "YES" moments, when but for BLAST you would shove your arms to the sky exclaiming "Yes!"

So, taking a blessing view to life kind of removes the "I" perspective a bit, and enables you to see the micro world view of life with and through MDinpain. What a cool life it is, helping others, helping your family, and helping yourself experience blessing......

Ahhhhhh..................
the beauty of it.
:hug: :grouphug:
Hey, you know what, I feel blessed to experience you sharing as you do,
Yup, :D

How are you?????
 

Hi MD

Hopefully you are doing a little better this week. Down time for an active person is tough.
Hoping and praying today is a little better. It's hard not to be angry when in pain. Maybe your recovery time is a time you can have some one on one with the kids. Just talking and sharing.
How's blast going? Not easy to remember is it?

Sandy

Update
 

Thanks for posts. Doing pretty well today. Only one really good program, so will need to work on that with rep. Blasting. Probably walked too much today. 6-7 miles over the day with a str8 back on mostly level ground. Saw iron man 3 with a friend - good movie. By the end of my walk home, ipg site pretty irritated and warm. When time came for dressing change i said &$)!, wound infection. Called md and emailed him pic. Getting labs tomorrow. Warmth at site died down quickly 15 min later. Probably my body not quite used to device, but will get all labs. Trying to be a good patient!

Well Heck
 

Hey there MD.

So only one good program... think of it proactively. You see, you have programs at all at this early point in your 8 day post op life. Me? I had no programs at all and no functioning device until 2 weeks post op at the programming session. The wisdom on the professional side was "you will have reduced surgical pain, so we will be truly programming for the nerve issues and not have interference from your reaction to nerve pain."

Upshot for you..... maybe, just maybe you are so still dealing with post surgical pain, it is hard to discern between the effectiveness of the device and the OWS from being cut, prodded, sliced, diced, and julienne fried. Give it time, and I HOPE tech set a post-op appointment with you to do the serious "tweaks" which will dial you in.

Infection.... well, you know the drill. After all, you are MD. Glad you have an inside track. When I had a post-op infection, the $%^##^%$ [ yeah, that is enough letters for the desired expletive ] insurance plan said "hey wait a minute, antibiotics are NOT on the protocol for post-op SCS implant, and they refused to "authorize" the med fill for a WEEK. I shoulda just let it go and died... then the family could have sued for huge money on the willful and wanton negligence side, but then I would be pushing daisies. :D Naw, instead I argued with the pharmacy counter a bit, said "come here, LOOK at this pus! I will PAY for the med, then go after the insurance!" Got the med which killed the infection, WANTED, oh how I WANTED to eradicate the insurance adjuster With Whom I Spoke that afternoon [she is still alive owing in part to our separation by phone wire], then addressed Mr. Pus aka infection [Oh, but it was gross].

Walking..... I did LOTS of that post-op on the straight and level surfaces. You are quite brave to take in a movie, sitting for hours, snarfing popcorn and cafe' au lait, and enjoying yourself. I was not so brave, and kept such outings less aggressive. Even so, you sound as though you are working on that positive side, striving for healing for yourself, for your family, for your peace of mind. May all be well.

[There you go, I didn't talk about praying... oh, dang it all, it was the eighth word of this sentence :D ]

HUGZ :hug: :grouphug:

Waiting to get labs
 

Don't think it's infected, but waiting at lab station. Good times. Yeah, one program is good. It's nice to have options though. My bet is that with a tweak I can get something else going. Problem with intraop trial is that you are prone. My main interest is how will it work with me standing? Should be able to get that figured out soon. Would like a couple other winner options.

Perhaps its my jealousy showing but perhaps you have been dealing with inflammation from over doing it, not infection. God bless the labs. You might experience better relief when swelling goes down. I was one of the lucky ones who had fuel coverage when I got off the table. I cried like a baby. Best wishes.

Spiney

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!