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    #16
    kmc123,

    Thanks for providing me that information I go to the pain Dr. Today to discuss the stimulator. Right now however I'm not completely convinced it will help with my pain so I'm going to ask for a referral to see a spinal cord and neurological specialist. And pray he'll agree to the referral and the specialist will see me.

    Being a quad I'm not sure I could operate some of the functions on the scs plus I'm so tired of surgeries. We'll see what happens again thanks for the information, take care
    Courage is being scared to death but saddling up anyway. .(John Wayne)

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      #17
      Cowboy, I guess I missed the fact that you were a quad. I'm not going to lie about it, but it would be very difficult for you to do all what is required to maintain the SCS...unless you have a full-time caregiver. If you were to get a SCS with rechargeable batteries, which I would recommend) you would have to re-charge the internal battery pack about once every 5-6 days, plus recharge the recharger device every time you recharge the internal batteries. It's a little complicated and takes planning. I would *hope* that the pain docs or the St. Jude reps would tell you all of that during your consultation. Good luck with your doctor visit and keep me posted.

      Comment


        #18
        OK had my appointment with the pain Dr. Yesterday about the SCS and decided for right now it's not for me. I'm going to go see a spinal cord specialist first even though pain Dr. Thinks he will recommend a SCS. And if that's the case I guess I will cross that bridge when I get to it.

        Being a quad I just can't picture myself being able to use the device properly. So wish me luck that the spinal cord Dr. Finds something no one else has and takes some of the pain away otherwise it may just end up being something I have to live with like the rest of my SCI brothers and sisters.

        Thank you all for the encouraging words and personal experiences.
        Courage is being scared to death but saddling up anyway. .(John Wayne)

        Comment


          #19
          i can't say I'm unhappy you declined. I am so sorry i have one and no MRIs with deteriorating condition is frustrating, found a doc in NYC to take it out but now it is not a minor procedure. They do work for some folks but i honestly don't know anyone who has serious issues and serious pain who is happy with it. I kept out of this as there is a lot of perjorative info posted on many things here and face it, we're fucked, so most of us will try anything and rightfully so.

          I'm still searching and in March will try prialt, the scariest shit out there right now, but who gives a fuck, i just cannot deal with this anymore.

          Good Luck

          ket
          Kindly,

          The Ketamine Kitty

          All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

          Next time I die make sure I'm gone,
          don't leave 'em nothing to work on JT

          And I ain't nothin but a dream JM

          Comment


            #20
            bollefen, your right we're f*cke! I've read so many posts from so many people suffering on here that at times I wonder is it all really worth it. For the most part I love life and even with SCI have a pretty good one thanks to my family and friends. How ever on those really bad days which there seems to be more and more of lately I'm ready or so I think to just say f*c! it I'M DONE

            I'm still praying and hoping something will help us but those prayers and that hope is getting slimmer and slimmer.
            Courage is being scared to death but saddling up anyway. .(John Wayne)

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              #21
              Originally posted by Cowboys_Place View Post
              bollefen, your right we're f*cke! I've read so many posts from so many people suffering on here that at times I wonder is it all really worth it. For the most part I love life and even with SCI have a pretty good one thanks to my family and friends. How ever on those really bad days which there seems to be more and more of lately I'm ready or so I think to just say f*c! it I'M DONE

              I'm still praying and hoping something will help us but those prayers and that hope is getting slimmer and slimmer.
              I can remember when i first joined here people saying the cure is just right around the corner, no closer now than it was then!! yes we're fucked!!! I've gave up on the pain, guess I've just learned to somehow live with it. I do what I can then lay down or whatever I have to do get it to ease off a little. Only thing I do take now is gabepetin. Wanted to keep my head clear and no pain meds worked anyway so........Good luck and keeps us informed on what they say!!!

              Comment


                #22
                I gave up on a cure a year after my accident and that was 28 years ago. I would just like a little relief from the pain in my hip and lower back. It's gotten to the point that any sudden noise sends such a painful shock through my hip I can't stand it.

                This may sound strange but I keep hoping it's a pinched nerve causing it but after 4 mri's in the last 5 years no one has found one yet so I dount it's that..

                BTW does any one else have atrophy of their backside? My left hip/butt is boney and it's the side with all the pain.

                I hope everyone was able to have at least a little fun on V day..
                Courage is being scared to death but saddling up anyway. .(John Wayne)

                Comment


                  #23
                  Cowboy, after-thoughts about the SCS; Before they put it in permanently they will put in a temporary SCS implant...exactly like the permanent one except the electrodes/leads are on the outside of your body and you are connected to an external battery pack. This stays in for about 10 days, to see if it will give you relief. *If you don't* get relief they will take the spinal cord electrode out and sew you back up and you are done. *If* you find that it relieves your pain then you go back and they implant the permanent leads and internal battery, sew you up and you have about three days of discomfort(although you may not have that since you are a quad). With the permanent, internal SCS and you either have rechargeable batteries, like I have, (and they take a little planning and handling to recharge,) or you would have a non-rechargeable battery; I had thaose to begin with but because of my high-usage of the SCS my internal battery only lasted 14 months instead of the usual 5-7 yrs, so I had to have a new one implanted (another minor surgery but not too bad). That's when the doc decided that I would do better with the rechargeable battery. So...........you would have the non-rechargeables and have little maintenance to deal with. No matter what they decide for your particular needs, I wish you good luck, and keep me posted.

                  Comment


                    #24
                    And here I thought this condition was particular to me......

                    "It's gotten to the point that any sudden noise sends such a painful shock through my hip I can't stand it" (Cowboy 6:02, 2/15)
                    Exactly, whenever I disclosed to other SCI how sudden loud noises set off some hardcore, spasmodic pain throughout my limbs, it would result in looks of disbelief. Even loud noises from TV elicited the same, and unpreventable pain.

                    "I've gave up on the pain, guess I've just learned to somehow live with it. I do what I can then lay down or whatever I have to do get it to ease off a little" (Duge 12:05, 2/15)
                    Same here, despite the words of my very-highly-thought-of physiatrist advising me pain with my SCI is not something I should accept, I eventually just accepted that pain is just part of the shit-package I was dealt with when I received my SCI. Not getting pain would have opened up so many opportunities for me in life yes, but when it's the dominant factor of your SCI what do you do?

                    Comment


                      #25
                      kmc123, thanks for the info can I ask your level of injury and complete or not?

                      Tim C. your not alone brother btw here is something to try for loud noise put your hands over your ears if you know it's coming and see if that helps even a little.

                      My pain Dr looked at me sideways until I showed up a an appointment or two in tears not wanting to live any more. Now that hasn't changed any thing I'm still in a ton of pain and I beleave quicky running out of options.

                      I'm not sure I can make it though another winter even a calif one..haha
                      Hell I'm not sure I can make it though summer time and if I'm honest it's crossed my mind on more then one occasion just to find a way to end it.

                      But being a quad even that has limits

                      I'm just f*#king tiered of it all
                      Courage is being scared to death but saddling up anyway. .(John Wayne)

                      Comment


                        #26
                        Originally posted by Cowboys_Place View Post

                        I'm not sure I can make it though another winter even a calif one..haha
                        Hell I'm not sure I can make it though summer time and if I'm honest it's crossed my mind on more then one occasion just to find a way to end it.

                        But being a quad even that has limits

                        I'm just f*#king tiered of it all
                        CBoy, amazingly similar, just a west coast version. As each winter comes to an end I swear I'll never go thru another. The cold just elevates my pain for reasons I can only fathom. Add this to the infections, boredom, burnout, insomnia, insolvent, isolation, sexless, rejection, future-less and I must wonder how I even made it this far.

                        Comment


                          #27
                          Cowboy, although I am not an SCI at all I still have horrendous pain resulting from an amputated left leg, above the knee. It was the result of being involved in an car accident in 1967. I have had severe pain off and on for over 45 yrs, gotten much worse over the last few years. Being an RN, I hated to ask for help. I didn't want doctors to think that I was a woose or asking for pain meds. I have been able to acquire enough pain meds over the years to get me through...BUT there are still times that I have "breakthrough pain" and that's what led me to getting info on the SCS and being able to get one implanted 16 months ago. It has helped *some*, more for phantom limb pain but not worth a shit for the severe nerve pain that makes one scream out loud until the meds kick in. I found this site by googling "nerve pain" and have been intrigued by the number of other patients who are having similar types of nerve related pain. I feel that I am very lucky compared to the majority of the posters here, but that does not minimize the fact that I still have nerve pain severe enough at times to seek any kind of advise or help that is out there.
                          I have always felt that until there are enough *doctors* who have suffered ( and I want them to have suffered as much as the most of us too) they will never understand how we suffer on a daily basis; even with what I have endured I have at times felt like I could take no more. Also if I had to endure the *severe* pain that I sometimes have I would end my life immediately.
                          So, I understand where you all are coming from. I have empathy for you and hope that we can all get through this crap together and help each to tolerate what has been dealt to us.

                          Comment


                            #28
                            Hi Cowboy, My doc has also offered me the SCS to deal with my pain. I'm reluctant to get it as I feel for me it's a "last resort" option and I've read about a lot of additional problems it can cause. Has your doc mentioned a pain pump for you? That is the other option my doc is giving me. My sciatic nerve is both legs is what's causing the most pain for me and keeping me from walking and sitting, so I'd really like to find something to reduce that pain. It seems though that none of the meds touch that type of pain though. Let me know what you've heard about the pain pump ....if anything. Hope you're doing a little better today.

                            Comment


                              #29
                              Lady T ketamine coma for amputation complications

                              BUT there are still times that I have "breakthrough pain" and that's what led me to getting info on the SCS and being able to get one implanted 16 months ago. It has helped *some*, more for phantom limb pain but not worth a shit for the severe nerve pain that makes one scream out loud until the meds kick in. I found this site by googling "nerve pain" and have been intrigued by the number of other patients who are having similar types of nerve related pain. I feel that I am very lucky compared to the majority of the posters here, but that does not minimize the fact that I still have nerve pain severe enough at times to seek any kind of advise or help that is out there.

                              Ketamine Coma, new for phantom limb and amputation pain.

                              relatively new, hard to fine NO EFFICACY for Central Pain and most spinal pain

                              HIGH efficacay to amputation related pain.

                              ket
                              Kindly,

                              The Ketamine Kitty

                              All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                              Next time I die make sure I'm gone,
                              don't leave 'em nothing to work on JT

                              And I ain't nothin but a dream JM

                              Comment


                                #30
                                Originally posted by kmc123 View Post
                                Cowboy, although I am not an SCI at all I still have horrendous pain resulting from an amputated left leg, above the knee. It was the result of being involved in an car accident in 1967. I have had severe pain off and on for over 45 yrs, gotten much worse over the last few years. Being an RN, I hated to ask for help. I didn't want doctors to think that I was a woose or asking for pain meds. I have been able to acquire enough pain meds over the years to get me through...BUT there are still times that I have "breakthrough pain" and that's what led me to getting info on the SCS and being able to get one implanted 16 months ago. It has helped *some*, more for phantom limb pain but not worth a shit for the severe nerve pain that makes one scream out loud until the meds kick in. I found this site by googling "nerve pain" and have been intrigued by the number of other patients who are having similar types of nerve related pain. I feel that I am very lucky compared to the majority of the posters here, but that does not minimize the fact that I still have nerve pain severe enough at times to seek any kind of advise or help that is out there.
                                I have always felt that until there are enough *doctors* who have suffered ( and I want them to have suffered as much as the most of us too) they will never understand how we suffer on a daily basis; even with what I have endured I have at times felt like I could take no more. Also if I had to endure the *severe* pain that I sometimes have I would end my life immediately.
                                So, I understand where you all are coming from. I have empathy for you and hope that we can all get through this crap together and help each to tolerate what has been dealt to us.

                                Kinda another reason I decided against it, Dr Young also told me the pain was NOT with my feet it was in my spine so it really wasn't gonna help me at all.

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