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really excited and hopeful

JulieAJJulieA Posts: 1,420
edited 06/11/2012 - 9:01 AM in Spinal Cord Stimulation
Hello Peeps,

I met with my NS yesterday finally after my nerve block at T4/5/6 for my future Dorsal Column Stimulator (SCS). It was mentioned that one of the NS in the Group is currently doing a study and specializes in these so I ask is his study closed? To make a long story short I have an appt this Monday with him at 9 am. This is the fastest appt I have ever recieved with any NS. He briefly looked over my file and talked to my current NS. He said he would place Paddle leads slightly above my bad areas for the trial- so I would get the best coverage he is currently testing 3 different brands (I forget) but he thinks he can help me :)

So Monday will be a big day. I have an appt with my PM to discuss the very subject in the afternoon and an appt with my new NS in the AM. I wont see my old NS for 3-6 months unless the trial goes bad. Then I will go back and ask for a pain pump trial.

The best part is if he accepts me into the study even if my insurance declines I may not have to pay as much.



  • Hi Julie :H ,

    What wonderful news! I am so glad for you! I got goose bumps when I read your news :D . This is the second post on S-H today to which I have replied it's great to read about some good news =D> .

    I have said before, I am considering talking to my PM doc and/or NS if needed regarding SCS. Still on the fence about them, though, Been playing my Pain Game for going on 6 years now and getting pretty tired of all the meds. At a point where my meds are the only thing that can control my pain ... and then there are STILL flare ups.

    Please keep us posted on your progress ... the good, the bad (hopefully none) and the in-between). I will be anxious to follow your progress and keep you going along your new journey, as will many of your other Spiney Friends. You will be in my prayers and thoughs, girl. Stay strong and know that your S-H Family is here if you need us. Here is a >:D< for warm thoughts.

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • Hi JulieA, this sounds like great news for you. It sounds like most or all of your pain is in the "T" region. Are you having the 3 leads placed in 3 different areas? Just curious as I have 3 leads - 1 lead in my lumbar area and the other 2 leads in the T region. But, I had 2 trials with one testing just the lumbar area and the second testing the T area. My PM doc - he also with the surgeon that did my implant procedure - and he said he would get a more accurate diagnosis if I tried the T and lumbar areas separately. Sharing my experience so you know how other SCS trials were performed. All 3 of my leads run off the same power unit (St. Jude) too. My PM doc says he uses units from all 3 of the major suppliers as he gets better success if he first evaluates his patient and then determines which SCS maker has the best system or model that will work best for the particular patient. I liked his approach because I felt he made choices based on best relief for me instead of being tied to a supplier because of price or he got better incentives from one SCS supplier than the others. Basically, that he was independent in determing which SCS worked best for me! For me, the 2 trial periods were more of a challenge and uncomfortable than having the permanent SCS. Both of my trials lasted about 3 - 4 days each. Also, I get pretty good coverage. I still all my pain meds but the SCS has enabled me to concentrate better and to not have the extreme peaks of pain. I do continue having peaks of pain but the intensity is decreased. Also, presuming your trial is successful, you should consider all the angles while determining placement of the power unit. Some have it in their hips/butts and others above their waist. Mine is above my waist so I am not sitting it - which would be very uncomfortable and unacceptable - or in the way of my trousers waist or my belt, etc. If you want more details than we can provide in this open forum, send me a private message and I can answer other questions. Best of luck and let us know how you do. Jerome
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