NeuroTalk Support Groups - Do you have a SCS or Pain pump?

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- SCS & Pain Pumps (https://www.neurotalk.org/scs-and-pain-pumps/)

- - Do you have a SCS or Pain pump? (https://www.neurotalk.org/scs-and-pain-pumps/114143-scs-pain-pump.html)

My Doctors are pushing SCS any good news stories here?

I have been diagnosed with CRPS. I'm on very high amounts of opioids (Fentynal patches). I've been on high, high opioids for 2 years and my Doctors are pushing me to get a SCS. They claim that taking these high doses of pain meds isn't sustainable. Does anyone here have a successful SCS story with RSD or CRPS ?:wink:

Hi. I have a SCS implanted in buttock, and find it
excellent(on 3rd now) but due to spinal disease progression, I'm depending on paravertrabal nerve block and cervical epidurals to control upper spinal pain,spasm,loss of power etc. Minimal use of steroids in either injective procedures,performed with radiology.
I would like to know if anyone has a pain pump in situ for upper spinal pain?
Thanks in advance!

Hello, I am posting in hopes that my husband and I can get more testimonials regarding the spinal cord stimulator. My husband has been on the trial for almost a week (coming off on Tuesday) and so far he seems to like the effect it has on him. I am just somewhat worried about having the implanted SPS permanently. I want to think positive but also want to know the reality of it once the procedure is completed. Are there people out there who can truly say that the SPS has really worked for them? Please help us on making our decision easier. Thank you .

Quote:

Originally Posted by caligirl4ever22 (Post 1142869)

Hi Caligirl...
Can we start with this: What exactly would you say your concerns are? From your message you have a lot of questions perhaps turmoil surrounding this so let's deal with that and see if we can help both of you.

For the record I've had my SCS now for 2.5 years...and love it!

:)

Hi Caligirl,

While you are making the list of concerns Andy suggests you draw up, I would advise you to read through a few of the Threads here about Member's personal Journeys from Implant to Success or Failure.

You will learn a great deal from their experiences - as they unfolded.

Dave.

Prialt - anyone know this medicine

Anyone know much about Prialt, a medicine for a pain pump?

Hi there :)

Not sure if I sent the quick message right, I'm brand new here. If you get both messages and could reply to this one that way I will get notified. Sorry!!

Anyway, if you do get a chance I would love to hear how you are doing with your scs. I also have nerve damage in my legs causing burning pain and would love to ask you a few questions.

All the best,

Joe

Quote:

Originally Posted by Rrae (Post 619516)

Oh Mary!
You have inspired many, let me be the first to say!
I too have horses and am so grateful to have met you as you were getting this life-changing experience. I prayed and prayed that the pump would be a success, so you can ride again.
Thank you for sharing your experience!! :hug:

I have done the trial SCS and will be getting the permanent put in on Feb 24th. I knew as soon as they turned the unit on while in the O.R. that it was gonna work for me. I have nerve damage to both legs and the 'tingling' covered over the burning pain I've been dealing with for upwards of 5 yrs.

I asked the Doc about the pain pump and he flat-out refuses to do them. :mad: Why? Because of the 'commitment' ! He actually said and I quote "Nope, because then you'd have to marry me" ! :eek: What a guy.
He's pretty arrogant. If it weren't for the fact that he's so good at what he does, then I'd definately be looking elsewhere.
I'm up against the wall with this, so I will submit to it and pray for the best.

I'm anxious to hear of other's testimonies, good or bad. I feel very strongly that people need to hear both sides of these. It's a very invasive and expensive procedure and alot of these docs (mine) seem to think they are a dime-a-dozen. It is a hard decision to make, but Like Mary says, we just want our lives back. !
That isn't too much to ask now IS it! :rolleyes:

Rae

Quote:

Originally Posted by keep smilin (Post 619499)

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:grouphug::grouphug::grouphug:

Hello, my name is Kim. I just joined this forum. I had my SCS implanted Aug. 2014. I agree that the trial one did more in terms of pain relief than did the permanent. I find a small amount of relief from this device. My problem now is that the RSD has spread to my Right foot (original point of origin in Left/dominant hand) and now may also be affecting my tailbone. I am unsure what to do now. I really don't want to go through the surgery and healing again for a small amount of relief but at the same time I need some sort of relief. My pain doctor has said there is really nothing else he can do other than install a pain pump. If you have any advise for me I would really appreciate it. I just feel alone in all of this and have no idea where to turn. Thanks. Kim

I had my permanent SCS implanted about 3 months ago for a pelvic nerve entrapment. Although it works for pain it is causing some sort of interference with my body. From the start I've noticed a decrease in urine output and large amount of abdominal edema when the stim is on. This is my third time turning off my stim, each time having the reversal of symptoms. I've been off for 1.5 weeks now and have resumed normal urination and bloat is down. Has anyone else had this problem? My Dr has not done a SCS implant for this nerve before and doesn't know why my SCS is doing this.
Thank you for any help :)

SCS Complications

My wife had the SCS Burst rechargeable for about a year. It worked okay in the beginning but not as well as her initial ketamine treatments but that doctor retired so this was the only route available with the doctors here. After about 10 months, her CRPS leg started going out on her and she noticed the stimulator was not as effective. 12 months in, her battery overheated (much like a cell phone battery) and burned her from the inside. Since then, she has been having worsening bowel issues and cannot pass stool on her own. The battery was removed and replaced the the SCS non-rechargeable but was only turned on for a short time. The battery is a lot bigger and seems to be making the bowel issues even worse than before. We found a different doctor who will go back to the ketamine treatments that had originally worked for her. She will be having the current battery taken out.