Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 My 2cents You need to increase Neurontin. I think the effective dose is 2300mg a day. I was on 300 and did nothing. Prior to surgery I was on 600mg x 3 helped a lot. Sounds like you need a new doc. I had one just like that. When I switched I got my life back. I was put on higher dose of Neurontin, and ER morphine called Embeda 20mg, then 15mg immediate morphine 3-4 a day as needed. Also a muscle relaxer Amrix once a day 15mg, and I tried Limbrel an anti immflamitory. I had almost NO pain. Only if I was at work and really overdid it. Typically I was at a 3... From an 8-9 take me to ER. I hope you don't mind me interjecting. I go to a pain clinic, they have been great. Someone once told me- the doc works for you, find one who will. I go to Rehab Institute of Chi they work with TC etc daily, find a place like it if you can. No one should live with this much pain. As long as they are monitoring the dose, everything will be fine. >She has a tens unit but has only used it once or twice. she says it makes her pain so much worse. They did a nerve conduction study on Monday. I am really curious to hear what the Dr. has to say when we go back next week. She herself has not told me about the SCS but the PT assistant was telling me during her therapy that she was on a list. She is just getting weaker and weaker and her pain is no better with the medicine they have her on. The Dr. seems to not want to increase it at all. She is only on 15mg of mscontin twice a day it just doesn't seem like much to me. She is on 3000mg of neurontin a day, but she says she can't really tell a difference since she started it, about 5months ago. Just ready for some releif from all of this. It feels like it will never end to me, it has to be worse for her. > > > > >Subject: Re: Spinal Cord Stimulator >To: tetheredspinalcord >Date: Thursday, December 9, 2010, 9:50 PM > > > > > > > > > > > > > > > > > > Same question for me like Kathy. > > > >I have a external (TENS) one and not want to get SCS implanted after. i am > >able to place them lower ore higher. > >When i saw this 9 minute movie http://www.youtube.com/watch?v=rTnGFgVK_A0 > >(DUTCH) but it give you an idea )) i told him No. sometimes a can't use the > >TENS causes more ore give just headache. > >this can be also by SCS > >Like Kathy is saying i also know a lot people that have less ore sometimes > >no pain at al anymore. > >A small group however can have it du multiple damage or problems with the > >implant (battery) thats almost as big as a pacemaker > >Every 3 till four year battery must be replaced. > > > > Spinal Cord Stimulator > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Interesting and unfortunate that you had that experience. The pain clinic at which I worked would only implant a stimulator in someone who had some success with a TENS...clearly, they were doing the right thing! In a message dated 12/9/2010 7:30:20 P.M. Central Standard Time, kmoulton@... writes: Hi Livvie, Has she used a tens unit? If so, how did she react? I used a TENS unit and it sent my nervous system into over-drive and the pain levels went through the roof. They said the stimulator was different so I had one implanted - it didn't cause as much pain or nervous system problems, but it got to the point where the buzzing was driving me insane because it never felt " good " . Also, my body rejected the device and started to come through my skin along with causing very strange, granular scar tissue that built up all around it. That said, I've heard that others have great success ... all very individual and they'll do a trial first to make sure she gets some relief. Personally, I think their threshold for relief and surgery indications is low, but that's my opinion. Kathy Spinal Cord Stimulator My daughter has been placed on a list for a trial...just wondered if any of you have or have tried one and how it works for you? Livvie [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 I Agree with completly, I am at a painclinic to It seems the diffirence is that here in the Netherlands the anesthesiologist decide about al pain treathment. They have a complete other view about pain. The opinion of my anesthesiologist is that he try to make people painles and Surgeon repair and remove but for him is the job over. Go to a painclinic ore anesthesiologist in a other hostiptal if the not want to do it how you want. A TENCE is also a indication to get a SCS so why not take a pain block ore let some. He never wil report it to the neurlogist if you dont want this. My new Neurogist are against pain treatnent . I told him " We done, I am walk out with pain " The surgeon that operated me is well qualified and accept my disision. He did research (Now he is Proffesor and leading a new neurogic center in Amsterdam.) But worked for 16 years now with TCS patients. His explaination was when pain is blocked i never can make a good indication of the pain anymore. But told me also " I have to respect the patient to go to a pain clinic.) So please be carefull what she is go to do. (please let not only this docter deside let always make a second opinion how to attack the pain.) Good Luck Jan Willem Spinal Cord Stimulator > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 The SCS was no option for me because it works on one local place. However i know people where it was helpfull. They just say " I got my live back " Others like me had failed the test for implantation because there where painproblems on serveral places. So if your pijn is come from one place I will say concidder it !! If it gife no good result you wil not get it implanted. When the do place the remote controlled implant. the wil first do a sort of test with only wired stimulatator. As i failed the test myself the TWIN stimulator is still helpfull so. When the pain is so badly i can use it just on serveral places just where the pain is bad. They will use this most of the time as the first test. If the helps they can considder to think on the SCS as better and more confortable option. Jan Willem -----Oorspronkelijk bericht----- From: cell Sent: Friday, March 30, 2012 10:50 PM To: tetheredspinalcord Subject: Spinal Cord Stimulator Hello Folks, I don't think I have seen any emails in a long time. Anyway, has anyone had experience with a spinal cord stimulator? Thanks for any info you might have to share. Randee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2012 Report Share Posted April 2, 2012 Keep me informed about it, i like to know how it goes there now. I know the Pain Center has a good name. Does she get a short stay first and then phone ore weekly appointments I realy like to know this. Good Luck Jan Willem -----Oorspronkelijk bericht----- From: cell Sent: Friday, March 30, 2012 11:29 PM To: tetheredspinalcord Subject: Re: Spinal Cord Stimulator Thanks, Jan. The TWIN must be what we call here a TENS unit. I was wondering if that alone might also provide some help for my daughter. We are hoping to get her evaluated soon at Washington University Pain Center in Saint Louis. Randee Spinal Cord Stimulator Hello Folks, I don't think I have seen any emails in a long time. Anyway, has anyone had experience with a spinal cord stimulator? Thanks for any info you might have to share. Randee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 > > I am considering a spinal cord stimulator to relieve post tethered cord neurological pain. I discribe it as having my legs in a fire with someone scraping them with razor blades. I have tired ALL the medications for the past two years with minimal positive results. It would be great to here from anyone who has had a stimulator implanted and what the outcome was/is. > hi i have a stimulator and it did ok for about 1 year now i am having surgery to have it out because now when i use the stimulator it causes more pain also you will not be able to have any mri's done with the stimulator inside you. hope this helps Quote Link to comment Share on other sites More sharing options...
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