SCS & Pain Pumps For spinal cord stimulator (SCS) and pain pump discussions.


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View Poll Results: Do you have a SCS or Pain pump?
SCS? 121 85.21%
SCS?
121 85.21%
Pain pump? 13 9.15%
Pain pump?
13 9.15%
Worked well for me 38 26.76%
Worked well for me
38 26.76%
Works somewhat / partially 44 30.99%
Works somewhat / partially
44 30.99%
Didn't work for me 9 6.34%
Didn't work for me
9 6.34%
Had to have it removed 13 9.15%
Had to have it removed
13 9.15%
Had medical complications 15 10.56%
Had medical complications
15 10.56%
Had mechanical malfunctions 10 7.04%
Had mechanical malfunctions
10 7.04%
Still in but turned off 17 11.97%
Still in but turned off
17 11.97%
Other issues explain in a post please. 20 14.08%
Other issues explain in a post please.
20 14.08%
Multiple Choice Poll. Voters: 142. You may not vote on this poll

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Old 05-06-2010, 06:02 AM #11
ALASKA MIKE ALASKA MIKE is offline
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Quote:
Originally Posted by cookieb40 View Post
I知 a 21 year old male that has a severe form of Neurofibromatosis that is rapidly increasing that causes tumors to form deep in my body all over that causes pain. I知 loosing all function of my arm and leg due to it being nerve pain and damage. I was an athlete but now I am bed ridden. The docs want to put in an intrathecal pump in me to help with the horrible pain and because I知 on very high doses of oxycontin and oxcycodonne. I知 scared to have it in because I知 a skinny guy and I知 wondering if it will even help much or what kind of pain meds are the best to be straight in blood for anyone with horrible nerve pain? I pushing to do this hopeing i can get back to a somewhat normal life and wondering if it hlps others with neuro pain?
it doesnt go into the bloodstream. try this website for info on the drug pump.

http://www.medtronic.com/our-therapies/drug-pumps/
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Hoping you feel better,

ALASKA MIKE
ARACHNOIDITIS,CRPStype2/CAUSALGIA since 2004
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Old 05-07-2010, 05:27 PM #12
Jcompere Jcompere is offline
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Default SCS implant for RSD/CRPS

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Originally Posted by keep smilin View Post
note than mine!!! I have the SCS..in since 9/08... Trial went fine..believed I was a candidate..permentant implant put in...not able to with stand the vibration of it..causes much pain..can not wait to turn it off.... and it caused spread of my RSD.... Leaving it in in order to help with good leg, it's RSD affected now too... but all in all..I was never given a choice... pump or SCS... leaves one with a sore back.. hip pocket and some limitations... I won't be bungie jumping, Mary.... sorry.. and SCS rep's are not to be found now!!! What the heck...

Good rest everyone and thanks for listening to my woes....

KS
Jcompere CRPS/SCS implant! I just got back from my doctors after having the permanate SCS implanted 3 wks ago. I am starting to experience back pain along the leads and the implant site is very sore. I was told to message the back and implant site to keep everything from tightening up. He expressed how important it is to stretch the tissue out durning the healing process. I told him I was unhappy with where the implant was placed(I have the paddels @c2-c3) the implant ended up on my waist line Where my clothing irritates. He agreeded with me and said he was following the Boston Scientific Rep's direction for where it should go. She was worried about my bra line!!! My result is not as good as the trial when I use 2 of my programs(the best ones) it causes my right shoulder to jerk when I turn up the signal. Has any one had problems like this? According to many of you this is mild so far.
"J"
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Old 10-16-2011, 02:07 AM #13
rsdbadfoot rsdbadfoot is offline
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Default RSD and the SCS

Hi all if i had it to do over again i wouldnt get the scs i am very unhappy with mine it does help the pain some but i am still on the same amount of pain meds that i have always been on since i got to be the proud owner of my rsd. I remember reading everybodys posts before i got mine. Before i got the trial i told the doc that i had alot of scar tissue in my back from two previous surgeries but he said that wont be any problem at all cause i know what i am doing boy i thot what a arrogant attitude cause other doctors i had seen were all concerned about all the scar tissue. then i talked to them about haveing a nero surgeon put it in and was told they dont do it any more antheiogists are putting them all in at the hospital i was going to. well when it came time for the trial and he was trying to put it in i was yelling about how painful it was finally after twenty minutes of this pain i told him to stop i didnt want it i couldnt take it anymore. then he said well i might as well stop i cant bet it past the scar tissue boy that didnt make me feel good then he said well i can put it in this other way that will only hurt a little bit and i asked his how is that and he said thru the cottle and i asked what is a cottle and he said like i was a dumb ** well thats your tail bone so he put it it the tail bone and he was right it didnt hurt and the trial one helped the pain when i went to get the trial out he didnt show up for the appointment and there were about six people there this is a training hospital and they were there to see it removed well only person there that had ever seen one removed was a nurse and she pulled it out was her first but she said she had seen it dont many times ya just pull them out.

Well a week later with more reading about the scs problem i decided i didnt want my generator in the back i thot it would be uncomfortable and hard to charge the batteries so i tried to call him but he doesnt return calls so i had to make a appointment and drive clear down there just to talk to him about where to put the generator and i told him i wanted it up front in between the hip and bellybutton and he said ok. then the day came for the permenant one and when i was getting on the table i told him my tail bone was still hurting from the temp one and he said we will worry about that pain later lets put in this perm one first then he said on u wanted the batteries up front right and i told him yes and he well that is too much work i wil move it up some but not that far it would take longer well now it gets pinched between my hip and ribs just sucks where it is but i guess it is better than in the back boy he is lazy.
well my tail bone is stil hurting and he wants nothing to do with the pain even told me to go away and dont come back said he dont know anything about back pain and what he did didnt cause the pain problem weil it is so obvious that it did ya cant believe a word they say....well since then i had a nero surgeon take it out of the tail bone and reinstall in screwing it to the back bone so the nerve is right on the end of the wire but the tail bone pain is getting worse and i dont have a clue as to how to get it fixed. I would try that pain pump i havetalked to people that have had it and liked it especially after they found the right meds for the best pain relief.........well live and learn...Alan
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Old 10-16-2011, 07:23 PM #14
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Default Thanks for sharing all of this, Alan...

I'm so sorry you've been put thru all of this! It seems unthinkable that this guy would leave you out in the cold like this!

Have you thought about seeking legal counsel over this?
Or do they not hold themselves accountable since this is a teaching hospital? I feel very strongly that something should be done here.

Nobody should have to go thru what you've been thru!

Rae
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Old 11-13-2011, 02:01 PM #15
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Default Still in, but turned off

Was to help knee's down to toes bilateral. It also went to my rear end and private area's. The 10th rate neuro in the country said to just get used to it. My pcp had some words back for him. It has caused it to spread to the areas it wasn't to go to. There are several links to the fact that SCS in severe cases of RSD only works for 3 hours to a few months and then is no longer helpful in all. Will post the links, if it is OK'd at a later date. Sincerely, hear4
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Old 11-16-2011, 08:48 PM #16
sarahdgoldman sarahdgoldman is offline
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Default SCS side effect of nausea

hi, my name is Sarah I am 34 years old, i am new to this site. i had a spinal cord stimulator implant put in september 22nd, 2011. It has been now 8 weeks. My history is that i had in 2005, a L5 laminctomy and was left with nerve damage in my right foot, l5 s1. i have been living in constant pain!
The SCS coverage is amazing for my leg and back pain, i have managed to wean off all my meds.
The only problem im having is that I'm suffering severe motion sickness from the stim. we have tried reprogramming 3 times. The doctor and St Jude rep keep saying its because the stomach nerves are getting pulled into the leads.
we reprogramed today two new frequencies and i am hoping that this will stop the nausea. Now that i can finally walk more then 2 city blocks i cant imagine how i have lived 6 years without the implant.
If anyone has experienced nausea as a SCS side effect please write back.
thank you.
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Old 11-17-2011, 04:34 PM #17
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Smile Hello Sarah!

I'm hoping more people will see your post because you bring up a very interesting topic. Maybe try starting a new thread down below in the active posting and I bet you'd get good feedback.
Right now, we are up in the 'Sticky' section and I don't think too many people venture up here.
I responded to your post down below and I bet if you start a whole new thread regarding your situation, then more folks will see and respond.

It's so great to have you and I hope you can begin to get some answers soon!

Caring,
Rae
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Old 11-19-2011, 12:53 AM #18
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Quote:
Originally Posted by sarahdgoldman View Post
hi, my name is Sarah I am 34 years old, i am new to this site. i had a spinal cord stimulator implant put in september 22nd, 2011. It has been now 8 weeks. My history is that i had in 2005, a L5 laminctomy and was left with nerve damage in my right foot, l5 s1. i have been living in constant pain!
The SCS coverage is amazing for my leg and back pain, i have managed to wean off all my meds.
The only problem im having is that I'm suffering severe motion sickness from the stim. we have tried reprogramming 3 times. The doctor and St Jude rep keep saying its because the stomach nerves are getting pulled into the leads.
we reprogramed today two new frequencies and i am hoping that this will stop the nausea. Now that i can finally walk more then 2 city blocks i cant imagine how i have lived 6 years without the implant.
If anyone has experienced nausea as a SCS side effect please write back.
thank you.
What are the odds of this application becoming a new weight loss surgery?

Instead of lap band surgery--people will go have the "Sarah" implant...

In all seriousness, it sounds great you're getting pain relief, and I hope they can fix your nausea problem!
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Old 12-04-2011, 08:13 PM #19
sarahdgoldman sarahdgoldman is offline
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What are the odds of this application becoming a new weight loss surgery?

Instead of lap band surgery--people will go have the "Sarah" implant...

In all seriousness, it sounds great you're getting pain relief, and I hope they can fix your nausea problem!
Thank you, but i really wish this nausea would go away.
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Old 12-04-2011, 09:13 PM #20
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Crazy Nausea...

Hi Sarah,
I'm so sorry you are still suffering with this nausea.
A few weeks ago you were getting reprogrammed and I was hoping that would help.
What does your Dr say about this?

Congrats on being able to wean off the meds! There's only 1 other person here that I know of who has had success with getting off all meds.
That's amazing!

Rae
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