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Old 04-25-2013, 01:06 AM #1
MDinpain MDinpain is offline
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Tongue 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!
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Old 04-28-2013, 11:50 AM #2
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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!
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Old 04-28-2013, 12:40 PM #3
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Heart Ummmm

Quote:
Originally Posted by MDinpain View Post
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!
MD I know how important work is to you also, however you "MUST" follow the BLAST for at least 8 weeks! I can tell you Rrae was not careful and ended up having a lead migrate "south". Also for a FYI my pain doc has fired patients for not following his directions to a T. He feels that if you don't take your instructions seriously then you have no business getting a SCS. He is very adamant about all follow-ups, I live 200 miles one way from him and that is NOT a good enough reason to not follow up as ordered. I am willing to do this trip to see him as I have had multiple pain docs before him, one who almost killed me during an epidural (Lidiocaine straight into a vein will do that )
So as you well know a good doc can be very hard to find.
I guess what I am telling you is to be VERY careful to follow his directions. When I got my 1st unit I just told everybody that I had back surgery and had very specific instructions to follow for at least 8 weeks. Worked well with out really letting everyone know what had gone on. This worked well with different businesses that I use. (helps to live in nowhere people are more than willing to help out the nurse who cares for your friend family etc who had back surgery ) Please, please be careful or it is all for naught!
As far as battery placement mine is in my abdomen, my initial unit was placed when that was the place they put units at that time. Now due to the danger of turning patients mid surgery and maintaining a sterile field is a nightmare. Basically they asked where my panty line was and went below that. When my current unit was placed (new leads and battery) We had a rather long debate about moving the unit to my backside. My logic that I could not monitor my site or care for it if it was back there. (heheheheh)
As far as the lead placement each time I had versed and was awake enough to let them know when they had the best coverage. They would drift me off to sleep as needed when they didn't need my input.
I wish you well and encourage you to continue to post your journey, questions, concerns and just whatever to let us know how you are doing and allow us to support you through this journey!
z
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Old 04-28-2013, 01:14 PM #4
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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
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Old 04-28-2013, 03:51 PM #5
MDinpain MDinpain is offline
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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.
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Old 04-29-2013, 07:24 AM #6
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Default 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!!
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Old 04-29-2013, 10:10 AM #7
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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
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Old 04-29-2013, 08:56 PM #8
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the journal idea isn't a bad one, but I'm just not sure I care anymore. Thanks for the suggestion though

Quote:
Originally Posted by eva5667faliure View Post
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
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Old 04-30-2013, 12:27 AM #9
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Angry 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!
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Old 04-30-2013, 01:44 AM #10
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Quote:
Originally Posted by MDinpain View Post
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
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