Announcement

Collapse
No announcement yet.

SPINAL CORD STIMULATOR

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    SPINAL CORD STIMULATOR

    After a quest of explanations about wicked pain of my lower back that travels down my leg-shin-foot, I finally have a Pain Specialist who says they can help me. I was given info on a Spinal Cord Stimulator that will first be trialed then permanently implanted.

    I was REALLY hoping any with MS who has one of these could PLEASE PLEASE (yup I am begging-pathetic huh?) give me ANY info on how it is going.

    I already asked about MRI's and was told the FDA has already approved brain MRI's to be done for those with a SCS and the company "NEVRO" is now working on Spinal Cord MRI's.

    Please know that I am in so much pain, I am beside myself, at times. I even get to the point where I understand why some people with intractable pain consider suicide. I am not considering this drastic option because I try to stay strong but, at times, I appreciate why some think about it.

    I am currently on Norco, until I get the temporary wires placed.
    Peace to all,
    LM
    RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

    #2
    Hi Fishytrout -

    I've never had this done and know nothing about a spinal cord stimulation, so I'm not much help. I just want to let you know that I'm so sorry to hear you are in so much pain. How long do you have to wait before the procedure is done? Sending hugs and prayers to you and hopes this will eventually keep you pain free!

    Hang in there and keep us up to date!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Originally posted by Fishytrout View Post
      After a quest of explanations about wicked pain of my lower back that travels down my leg-shin-foot, I finally have a Pain Specialist who says they can help me. I was given info on a Spinal Cord Stimulator that will first be trialed then permanently implanted.

      I was REALLY hoping any with MS who has one of these could PLEASE PLEASE (yup I am begging-pathetic huh?) give me ANY info on how it is going.

      I already asked about MRI's and was told the FDA has already approved brain MRI's to be done for those with a SCS and the company "NEVRO" is now working on Spinal Cord MRI's.
      Spinal Cord Stimulators are different based on the manufacturer of the device. I would be curious why the physician selected Nevro versus some of the other brands. You're the one that will have to live with the implant so you should have some say into what goes inside of you.

      MRI
      With Nevro you have have head MRIs up to 3T (I'm guessing closed) and only with the perc leads. So you cannot get spinal MRIs, nor can you use paddle leads (wider pain coverage).

      Medtronic already has full-body MRI compatibility with perc and paddle leads, but only to 1.5T closed MRI. I believe Medtronic is currently the only manufacturer that has a MRI-compatible paddle lead. To my knowledge none of the manufacturers have tested open MRI for compatibility.

      SUPPORT LINE
      I don't know of Nevro has a patient support line, but Medtronic has an Ambassador program where you can sign up to talk to an existing SCS patient. I do not know if any of their SCS Ambassadors have multiple sclerosis, but you can find out by contacting them at the link below:
      http://www.tamethepain.com/chronic-p...sador-program/


      I wish you well...

      Comment


        #4
        Originally posted by Seasha View Post
        Hi Fishytrout -I've never had this done and know nothing about a spinal cord stimulation, so I'm not much help. I just want to let you know that I'm so sorry to hear you are in so much pain. How long do you have to wait before the procedure is done? Sending hugs and prayers to you and hopes this will eventually keep you pain free! Hang in there and keep us up to date!
        Seasha thank you for your hugs and prayers. I am currently on Norco every 6 hrs (which is making me so nauseated-ugh) I am anxious to get things going. I am also a bit nervous. I am not typically a nervous-nellie but, after reading all the info about the insertion I guess "REALITY" is setting in.

        I will get the temporary SCS (Spinal Cord Stimulator) placed in 3 weeks then, after a 2 wk period to test it for my pain, will have the permanent one placed. Marco thank YOU for your response TOO. You brought up some interesting info. I found out my Pain Specialist does Speaking Engagements for Nevro and I am no fool With the info you gave me on Medtronic I WILL be asking him about that particular device. It is ALWAYS good to discuss ALL the options.
        Peace to all,
        LM
        RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

        Comment


          #5
          Originally posted by Fishytrout View Post
          Marco thank YOU for your response TOO. You brought up some interesting info. I found out my Pain Specialist does Speaking Engagements for Nevro and I am no fool With the info you gave me on Medtronic I WILL be asking him about that particular device. It is ALWAYS good to discuss ALL the options.
          Many doctors have relationships with pharmaceutical or medical device companies so it's not surprising. Is he still being objective?
          • I visited a neurologist that put ALL of his MS patients on drugs in a specific order. It didn't matter what the patient wanted. If you were his patient you agreed to take them in his order.
          • I know other doctors that prefer that you do "A" instead of "B" because a company was very hard to deal with, their patient care line was terrible, etc, etc.


          The doctor having a cozy relationship with the SCS manufacture can also work in your favor. I can assure you a doctor with 300 NERVO patients is going to have more support than someone that has only 8 patients. Also, if he has that many NERVO patients then he should know that platform well and be able to help you through most problems encountered.

          My expectation would be that the doctor be able to articulate why he has selected a NERVO over Boston Scientific, St. Judes, Stim Wave, or Medtronic.


          Ultimately, you are going to have to live with the SCS; going through recovery, getting it programmed, recharging it, carrying your controller and eventually replaced multiple times in your life. You really won't know until the trial to see if you are getting more benefit than hassles.

          You could ask a number of patients about their SCS and the experiences will run the gambit from "incredible" to "it was worthless, but I didn't want to have another surgery to remove it so it's still inside me."

          I really hope getting a SCS helps you. I know you have been through a lot just to consider one. The majority of SCS patients get the majority of their pain removed.

          I wish you well...

          Comment


            #6
            Marco,

            Your statement was quite valid. Thank you for your input and the things you have presented. I will keep ALL of your comments in the back of my mind when I go to see this Dr. Friday. Thank you
            Peace to all,
            LM
            RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

            Comment


              #7
              Going to see the Pain Specialist today. I am nervous as H3LL. I don't think I want this SCS. There are too many issues with having one. I certainly DON'T want this pain, but there are too many problems that can occur (just the way I see it)
              Peace to all,
              LM
              RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

              Comment


                #8
                UPDATE

                Saw Pain Dr yesterday. I was armed with 9 hard-core questions. I was in medical field before MS took me out of the work force, and have extensive ICU & Research experience, so I did not let him "talk around" my questions. He answered my questions such, that I DID end up deciding to have a Spinal Cord Stimulator (SCS) implanted. I will have a trial of the SCS before everything is permanently placed, so I will see if it truly works for MY pain. I will keep updating here, so that those who may consider something like this can have "info from someone who has one".Many thanks to all who have commented thus far . I took your comments quite seriously and will take any future comments seriously.
                Peace to all,
                LM
                RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                Comment


                  #9
                  Good luck.

                  Comment


                    #10
                    Thank you Carolinemf I am still scared, but pain is making me forge ahead so I can be FREE of that pain
                    Peace to all,
                    LM
                    RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                    Comment


                      #11
                      Best of luck to you for a successful trial and pain relief, and on from there. I'm sure many of us will be following your progress and cheering for your pain-free future!

                      Comment


                        #12
                        Originally posted by DogMa View Post
                        Best of luck to you for a successful trial and pain relief, and on from there. I'm sure many of us will be following your progress and cheering for your pain-free future!
                        Thank you DogMa and as promised I am back here to give a quick update.Yesterday I went to see a counselor so I could get "Mentally Fit" documentation. I presume it is because insurance companies, and the Pain Specialist (who is inserting SCS) are confident it will actually help my pain. The Counselor was quite easy to speak with. I was glad it was a Social Worker and not a Psychiatrist (Psychiatrists are weird HAHAHA). I was told that he would be faxing a resounding approval to my Pain doc. STEP ONE = CHECK!
                        Peace to all,
                        LM
                        RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                        Comment


                          #13
                          Brief update:

                          Called Pain Specialists office and they are working on assuring that my insurance will pay for this. Told me to call my insurance to help speed things along. UGH it is tiring to be a patient.
                          Peace to all,
                          LM
                          RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                          Comment


                            #14
                            After calling my insurance companies I got a call from the Pain Dr office. I am now scheduled for my "Trial Insertion". The Trail will last 7 days and I will see if it WILL help my pain. The only thing inserted for this is 2 "wires" which will be hooked up to a box that I have to carry/keep with me. Wish me luck.
                            Peace to all,
                            LM
                            RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

                            Comment


                              #15
                              It's been almost a month of waiting... I wish you lots of luck!!
                              1st sx '89 Dx '99 w/RRMS - SP since 2010
                              Administrator Message Boards/Moderator

                              Comment

                              Working...
                              X