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I'm back on schedule

stockbrokersstockbroker Posts: 464
edited 06/11/2012 - 8:28 AM in Pain Management
I sure am glad I trusted my gut and did not proceed with that neurosurgeon who was just so-o-o-o indredibly fabulous he wouldn't speak to his own patients. After what seems to have been a full-time job, I have put together the best team of docs a girl could hope for. I have the neurosurgeon who is going to do the final implant (problably with laminectomy leads)and who I have met face-to-face and talked to and who answers my questions, the entire nine yards. I also have a neat PM doc, a very petite lady who is nice as can be and tells me the new SCS are made out of a material that will permit one to have an MRI (as long as its shut off). I'm going in this Thursday for the psych evaluation and then I should be off and waiting. I also have a separate PM doc who is much closer to home who is doing my drugs and who feels like an old friend. So my situation has certainly improved for the better. And thank you to all of you who helped me get through the horror of that last experience. Susan.


  • I am so very jealous that you have managed to find the dream team! Please keep us informed!
    I do my SCS trial in slightly more than 3 weeks...
    Oh, please let it work, for all that try it! I am so tired of pain, pain meds and forgetting everything!
  • stockbroker said:
    I also have a neat PM doc, a very petite lady who is nice as can be and tells me the new SCS are made out of a material that will permit one to have an MRI (as long as its shut off).
    I would question that MRI information to the point of requesting copies of the source of her information. The SCS manufacturers can't even legally make that statement and the FDA requires their safety information contain the exact opposite statement.
  • hi! :H what good news that your pain program is going your way!! =D> you will get approved with no problem i am sure!! :D good luck as you continue forward! Jenny :)
  • Susan,

    That's excellent news. I too am curious about the claim to be safe for MRI's. Just doesn't pass the logic test. It would be fantastic, however more info is needed.

  • I'm told this is the latest generation of spinal cord stimulators. The subject came up when I told her I wasn't keen on the idea of not being able to have a deflibrilator used on me and she told me the latest stimulators do not have that restriction. In fact blah blah blah MRI comment. She also told me how she had gone from using Medtronic to Boston Scientific, back to Medtronic and then ANS so I don't even know which brand she's using. It may be a while until I see her again(you know how that goes) but I, for one, sat up and took notice when she made this comment (as I see the rest of you did). That would be pretty cool though. I've been worried about what I would do with all my free time if I weren't lying in a tube somewhere getting some part of my lower anatomy scanned (just kidding).Susan
  • The MRI question at my trial! If there is a newer unit that allows pacemaker use and MRIs. I will be waiting/begging for one! I'm not as young as I used to be! May need those things some day!
  • I am so happy to hear you are back on track with your SCS. That is wonderful news!!!!!!!!!!!!!! I wish you the best of luck. Keep us posted.

    Jacque >:D<
  • This was long overdue. You have been through hell and back trying to get someone to implant this device and I hope it brings you relief. I am very happy for you and look forward to hearing how you do with the SCS <:P
  • I just want to thank all of you. AGAIN, for supporting me through some of my darkest days. I know my primary asked me if I wouldn't just be better off going along with the weird psychologist, but, who knew what he would do with his apparent anger. How would he interpret the SUBJECTIVELY GRADED MMPI (after already giving me a "pass") As it turns out I feel so good about the hands I have placed myself into. Be advised, I filed a complaint with the hospital (who's attitude was "we asked the psychologist if he lied and he said 'no'" so that's good enough for us. (Thank God our criminal system doesn't work the same way.) I also filed a complaint with my insurance company and with the psychological examining board. I don't expect much to come of it because it is his word against mine. There were no witnesses. He seemed quite cocky in the knowledge that he would get away with this. But I take comfort in knowing I've caused him a boatload of trouble and he will think twice before doing this to someone else. But enough of that. Onward!
  • Just picking up a point & I am also curious about the MRI stuff as I thought this was a massive no no - would love to know more about this new generation SCS.

    As far as using a defib on you, hopefully if this ever happened it would be because you are in REAL need & once they had got your heart beating again, the problems with the SCS would be sorted. I would be far happier to be alive than not defibbed incase it caused a problem with my SCS? I understand you couldn't have an implantable one with a SCS but if they thought I needed one of those, I perhaps would go back to having my neuropathic pain & get my SCS out - otherwise it would be a terminal problem!!! Hopefully we will never have to face ANY of these dilemmas, but an interesting thought!!! :?

    Please could you let me know what the make & model of this new generation SCS is so I can look into it.

    Eliza x
  • I certainly will do. May I suggest that anyone else who is seeing a doc re: a SCS before me could also ask about this topic. I may not see the PM doc for a month. Susan
  • That's awesome!!!

    And on the MRI bit, I asked in detail about it and was told that if I HAVE to have an MRI, my neurosurgeon will send me to a colleague of his in Chattanooga, TN (not too far away but not too convenient, either) and I can have one with him. So NS doesn't let just anyone do them, but it can be done. (And he has done it.) He strictly uses the ANS brand, but I don't know for how long that has been, or if he has always used ANS brand.

    Keep us posted, Susan - hope you have a quick psych eval!!


  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I'm very happy for you Susan. You deserve it. I had an ans scs put in in Dec. 06 and it was pretty much a complete failure.
    I know I should go back and give new leads a chance. But I'm just really scared to have another surgery.
    Please let me know how it works out for you. Although I know everything will be fine.
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I am so excited about this stimulator. I'm imagining my life not all messed up on drugs, sleeping regular hours, getting exercise. I would be disapppointed if it didn't work but I'd get over it and make do. I want to have a big smile on my faced like Cheri does. Susan
  • Susan,
    You have worked hard to get through these tough times, I hope so much that your future is so much brighter and your vision of sleep, no drugs and exercise come true. Keep focused on that.
    I hope your evaluation and any other tests come out with positive results leaving no doubt that this stimulator is the right one for you. Keep that smile on your face. It can become contagious.
  • I dream of being at a place where I don't suffer thru the day and rush home to sit my begind down and take my Norco to get things to calm down for the night. My hope and my docs hopes match actually. I manage on my meds, but it is too much to maintain form much longer at my current level.
    My boss lets me hide in my office and he knows and understands my limitations. He is also sitting on my job rewrite for me! He wants to know I am stable and plans to rewrite me a position that removes my physical demands, but not until he knows I am stable and not on meds all day...He is 100% behind the SCS and my doing this. If it fails and I have to look at something else or stay on meds I may be joining the unemployeed! That's what I have riding on this.
    No wonder I get a little wound up at times. 2.5 weeks till my trial starts!
  • Hi Guys

    Just wanted to continue to offer some hope to you all waiting for trials etc. I am 3 months following mine SCS for neurpathic leg pain & I love it. I have started to reduce my narcotics & feel really good, down by a third so far - I feel like I have my brain back & that I have been asleep for about 2 years!!!!

    It has been a long road - but well worth it. I have a Precision Bionics rechargeable unit that has been great. I know it doesn't work for everybody & this can be disappointing but if there is a chance of success, I would definitely give it a go. My pain scores are reduced by about 70% so far (hope it lasts). It has shown problems in other areas (this can happen apparently) but as the nerve pain has improved, the others are manageable.

    The SCS does help & make a difference so GOOD LUCK to Susan, Wrambler & anyone else who is going through this process.

    Eliza <:P
  • Since most of the posters here have or are going through this. Does the SCS do anything for a dead "heavy" feeling?
    For the last several days I've been waking with shooting pains, shoulder to hand and usually they seem better by about 3 pm and I just have the "normal" pain. During the shooting pains and sometimes without I will get a deeper sensation of pain and the center of my bicep area to elbow feels very much "heavy and dead" I can't really describe it any other way.
    While going through this again today I started wondering if the SCS masks the sharper pains, wil it do anything for that dead sensation? Or will that be gone too? I will settle for the sharp pain being gone, but wonder if anyone knows what I'm talking about and has any input?
    I can move this to a new posting if we need!
    Please tell me if I need or you want me to do so!
  • I find that my SCS helps with quite a bit more than just the nerve pain in my neck, shoulders, arms and hands. It's kind of like having and internal massage going on all the time and it's quite nice. Due to the overall feeling of well being that it provides via the triggering of natural endorphins, I find it to be a very energizing device.

    In the mornings and certain times when needed, I will tune it to where I am basically getting a complete internal massage from neck to toes and I lie quietly for about 15 minutes while I give myself a "treatment". It helps break up all the aches and pains from sleeping or whatever I was doing and allows me to "refresh".

    Don't know if that helps answer your question or not.

  • Sounds good to me! I know I will get answers to my questions during my trial. I was just really noticing the heavy dead sensation today and wondered if that was one of the things an SCS does not cover. A massage at will sounds like a lovely thing indeed! 2 weeks, 2 days to go till the trial! Thanks!
  • on this one even though I don't have the stimulator yet. One of my very first symptoms was a feeling of heaviness and weakness in my legs, this all due to the nerve damage at L5. I've asked about whether or not the SCS would have any benefit in this regard and was told, "no". Now, the fact that my pain will be greatly reduced means I will be able to exercise more but if the nerve isn't sending the proper signals to my muscles, I'm never going to be as strong and well-balanced (PHYSCIALLY)as I was before my injury. If that dead feeling you have is what I described as weakness or heaviness, this may answer your question.
  • I agree, however there's no way to know for certain until you have a trial. You may find that you are able to compensate. There are so many pre-conceived ideas of what an SCS will or will not do, how it feels or "doesn't feel". The bottom line is that it is such a complete personal experience I don't personally know how anyone, doctor or not, could make a determination if an SCS will handle someone's pain or feeling issues.

    There are many people who docs feel would really benefit, wind up without a successful trial.

    Theoretically if the feeling you are describing is from permanent nerve damage, then sure, it shouldn't help. But, how many people have posted SCS experiences that no doctor or video ever spoke about!

    SCS technology is based off of "the pain gate theory". It is simply a theory or educated reasoning. There's no way to measure the effectiveness other than by word of mouth and observation of the individual.

    Anyway, I'm getting off on a tangent. Take for instance the docs who have told many people that the SCS is like a TENS unit and that if the TENS unit helps our pain, then an SCS most certainly will. Several of us have found the exact opposite to be true. I could not tolerate a TENS unit for the areas my SCS is covering, yet the moment the rep turned on the trial unit, it was like the most wonderful feeling ever!

    I guess I'm on a soap box saying that we should never rule anything out in regards to an SCS, without a trial and the trial results.

  • Stockbroker, please can you fill me in...I haven't been on for a while and wondered if you can fill the gap on the L5 nerve firing wrong...why was this and how did they find it?

    Good luck with the SCS.
  • Is different, yes, indeed. I do not plan on taking anything as an absolute at this point! I had not even thought about the heavy dead feeling before. With any luck since I do not notice any range of motion problems I will be OK, if the SCS works! Still not sure why I am having increased pain the last week or so. I guess maybe just reinforcing the need to do this trial!
  • Certainly we have to allow that if we have a physician who has passed our trust test, then we need to put some credence in what he or she tells us even if it is not what we would like to hear. Lets separate out two issues: pain and strength: both of which can be controlled by our nervous system through our nerves sending signals from the brain to, in this case, the muscle. How many physical therapists did I go to with the diagnosis "weak gluts" and so I was given exercises to strengthen my gluteus minimus (it was really the medius, I just like saying gluteus minimus--it makes the insides of my cheeks vibrate). Anyway, these PT sessions invariably set off flares and every single one of the therapists did the usual core stregthening exercises with me. Finally, I went to see Susana and at some point she told me to squeeze my butt cheeks and I couldn't do it. It was like I was paralyzed.I concentrated, I squeezed, I held my hands on my butt (thinking of that Kurt Vonugutt novel where the black guy is always grabbing his butt cheeks and saying "Yes, yes"--Breakfast of Champions. Nothing happened. I could not cause my gluts to move. Susana then talked to the physical medicine doc who was treating me at the time and I was sent to see a surgeon. I have a lot of tightness in my calf muscles and in my hamstrings and I stretch and stretch and stretch and my muscles do not get any longer. Since I was so athletic prior to my injury, I knew just the exercises to do to strengthen my calves and quads and continued these exercices with my PT. To no avail. A lot of it was because I would inevitably trigger a flare. I'm told there are periphery nerves so that even if the information is not being communicated to the main nerve, once I get the stim, I can exercise and my body could find an alternate route of getting the job done but this is different than making the pain better. Since weakness and heaviness in my legs was my very first symptom (one I did not go to see a doctor about but just wondered what was going on)where I avoided the stairs and dreaded having to step up a curb, I was curious as to whether the stimulator would help this. I asked several docs. They all told me "no". " I can't just say, Oh what the hell do they know anyway" but I will be able to exercise and I will be better off. Though at the time the weakness began, I was 5' 7", weighed 120 lbs and played tennis (singles) 5 hours a day 5 days a week. Interestingly, even though my pain followed this weakness and then numbness (that sent me to the doctor--kinda scary) all my records say LBP and I've never really had LBP so all but one of my therapist treated me for LPB and finally one asked me about my symptoms and we discovered I couldn't squeeze my butt cheeks. After the surgery, I could and I would do it over and over again. "Yes. yes"
  • On Thursday, I saw the psychologist for the evaluation. He was quite a character--retired Navy. Always said, "Yes Maam". I started saying "Aye, Sir" He told me I was a "rascal" but not "nuts" and wished me the best with my simulator even before I had taken the written tests (which included 290 questions of the MMPI. Cheri, I can see how you couldn't sit through the whole thing. An hour is a long time to sit in a little plastic chair. You'd think they'd have something more conducive for a spine patient having to stay put for that length of time. Anyway, more good news from my insurance company. They will allow this doctor to go forward with the existing predetermination. They told me to go ahead and set a date for the trial. I have unexpected butterflies in my stomach. I'm not sure what to make of them. I guess a mixture of excitement and apprehension. Susan
  • Susan, Let us know how it goes. Welcome to the "not nuts" club! Hope they get you scheduled in soon. The time past the psych and waiting for the trial is a pain, bad choice of words! I have three more days to get through! My tiral starts on Wednesday! YAY!
  • My trial is Monday, March 23rd.
  • Hey that is fantastic! Hip Hip Hooray!
  • I'm so glad that you are now with a team of doctors with whom you feel comfortable. A neuro. who refused to talk to his patients? What the?! My neuro. gave me his cell phone number!! What kind of implant are you receiving that would permit you to get an MRI?? I just received a Medtroni RestoreUltra on 1/16 (with the surgical leads..those were recommended since I was young and want to try to conceive sometime soon).

    I also asked my medtronic rep. about the defib. and she said that, at that point, saving my life would be the ultimate priority so it would be used and the ER would likely do everything they could to minimize problems caused by the implant. This is another reason I am going to get a med alert bracelet, as suggested by a number of my docs. ;)

    Anyway, I wish you best of luck through this journey. I only just joined here but am interested in your story so keep up posted!

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