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St Jude trial today

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Unread 01-28-2013, 06:31 PM   #1
pg2005
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Default St Jude trial today

I had 2 leads placed today for my trial. The programs were pretty good when I left the office. Now that I'm home even the lowest settings are way too strong. I can't use my main program because of it. I get reprogrammed tomorrow.

Is the overstimulation because of lead migration or things getting settled after the procedure? I have been super careful with my movements. My dressing is intact.

Btw, owwww do my muscles hurt where my leads were placed!!
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Unread 01-28-2013, 07:41 PM   #2
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Smile Hi pg

Brass tack time- you are gonna be sore at the temporary insertion point, besides which you have this gob of WIRE hanging out of your back and plastered into place with a roll or two [OK hyperbole] of surgical tape. You are probably secure. Doc may take a look see tomorrow when you go for reprogram.

That issue with program being over the top? Common to SCS is the reality signal modulates according to body position. It just does. Thus, if you were programmed while your head was in a donut hole looking at the floor as my Trial was, you do not have much variety in the means to address the variance in body position.

But wait, there's more!!

My rep came into the recovery room and tweaked my program once I was setting up so I had four approaches to what might happen during the week of my Trial. So....................................maybe your rep did not double check with you before you were released. That is NOT just great, but at least you get a second look tomorrow.

Try it out, walk some, ride some, sit some, in moderation you know? Don't be like KZLRogue [I can talk about her becasue she has graduated into the life after permanent stim ] and start golfing tomorrow. I am just kidding of course. She did not resume golfing and karate and such until AFTER full healing and release from her doc post permanent implant. She is kind of a hero for folks who want their life completely BACK.

Questions, more? Ask away!

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Unread 01-28-2013, 08:16 PM   #3
pg2005
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I was programmed standing up and all was well. Hmmm... Not sure why it's acting up. I can't even attempt the most comprehensive program because it causes severe pain. I have 5 programs and can only use 2...one for siting/laying and one for walking. Unfortunately those are the ones that don't cover much. The rep had a very difficult time getting it programmed. He said usually people aren't quite so patchy.
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Unread 01-28-2013, 08:35 PM   #4
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Heart Arghhhhh

I feel your frustration pg, especially in view of your follow up indication of the manner in which you were programmed. Sounds like rep tried their best.

Hope the session tomorrow will go well.
This is worth it, IF it works,
Give it a go,
mark56
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Unread 01-29-2013, 12:48 AM   #5
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Quote:
Originally Posted by pg2005 View Post
I was programmed standing up and all was well. Hmmm... Not sure why it's acting up. I can't even attempt the most comprehensive program because it causes severe pain. I have 5 programs and can only use 2...one for siting/laying and one for walking. Unfortunately those are the ones that don't cover much. The rep had a very difficult time getting it programmed. He said usually people aren't quite so patchy.
I have permanent stimulator in place and find about every 6 months i have to have the settings increased to maintain a 4/5. I to had problems with origional settings. Good luck to you all.
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Unread 01-30-2013, 11:26 PM   #6
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Smile Hi David!

Welcome!

Another 'Buzzer' comes aboard

It's great to have you, hope you stick around,

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Unread 01-30-2013, 11:38 PM   #7
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Quote:
Originally Posted by pg2005 View Post
I had 2 leads placed today for my trial. The programs were pretty good when I left the office. Now that I'm home even the lowest settings are way too strong. I can't use my main program because of it. I get reprogrammed tomorrow.

Is the overstimulation because of lead migration or things getting settled after the procedure? I have been super careful with my movements. My dressing is intact.

Btw, owwww do my muscles hurt where my leads were placed!!
It's been a couple days since you posted this. Just wonderin how you're getting along.
Yeah, you'll be in a bit of pain a few days after being poked and prodded.
Hopefully it's lightening up by now.
Regarding the stimulation, it's common to have alot of variation after coming home. Some doctors won't even turn on the stim for a week or two after the leads and unit are put in. In most cases it takes a few tweak sessions in the first several weeks and like David mentioned, he gets periodic maintenance tweaks. Scar tissue can get a bit unruley and cause some of the variations and even cause a lead to move by a slight millitude (<--? ).

All sorts of crazy little quirks can happen I guess.

I hope you are doing well!

Rae
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Unread 01-31-2013, 06:09 AM   #8
pg2005
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Thumbs up

Thanks for checking in Rae! I was just about to post an update.

I was reprogrammed tuesday and now I have some very usable programs. I've done more walking than I havent in years. Its such a weird feeling to walk instead of use my wheelchair! Today I'm going to tackle hills in my neighborhood. I'm trying this thing out as much as I absolutely can. Gosh, I was so discouraged on monday with the programs I couldn't use and panicked that this scs trial was a waste of my time and lots of out of pocket money. At this point in leaning towards getting it.

The back pain is still a bit distressing. I can't sleep more than about 3 hours total. I caved and took a percocet earlier tonight. I know my doc didn't want me taking any so that I get a true reading with the scs. However, I have not been waking up with my usual foot pain, just pain from the lead insertion sites and hip/shoulder pain from laying on one side only. They wear off so quickly and I certainly won't take any during the day.

I have crps type II (peroneal nerve in leg). Normally it is ice cold and even the little temp strips my doc used on my eval couldn't even pick up a temperature, so less than 70 degrees. With the scs my foot has been warm!! Is this typical?
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Unread 01-31-2013, 12:59 PM   #9
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Wow, that's great that you're having such great results with your trial! I'm so happy for you that you are getting around walking!! And thankfully the reprogramming helped.

The back pain is rough, and it'll be worse with the permanent surgery, but it's only temporary and totally worth suffering through for great results.
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Unread 01-31-2013, 11:40 PM   #10
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SO glad you are feeling better about all of this, pg!

That's how I felt about mine also......the first day or 2 was pretty uncomfortable and I began to let a few doubts slip in. But, by day 3, I was really seeing the light! I got excited about what the SCS was capable of doing and I became very elated as I started playing around with the settings and stuff

I'm not sure why your foot is warming up, but sounds like that's a heck of a good thing!

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