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SCS Eval. and Pain Pump-Please Help!

spunky21sspunky21 Posts: 161
edited 06/11/2012 - 8:46 AM in Spinal Cord Stimulation
Hi All,
I am scheduled for an evaluation Sept 14th for SCS and Pain pump. I have read alot of posts and most were excited to get this done. Has anyone who was scheduled for this eval. not sure if this is something they really want to do? Yes, I can say with all certainty being in less pain would be wonderful. I have just had bad experiences with every single surgical procedure I have ever had. I am truly not overreacting at all. Rotator cuff surg. 3-19-03 developed blood clot size of softball, surgeon waited too long to do anything. PT had to be stopped shoulder froze up. Had manipulation and rotator cuff was retorn. Have yet to get it repaired. Cervical fusion C5-6-, c6-7, rt. vocal cord severed and paralysed. Pain worse than before had this 2008. Foot operation many years ago, woke up during surgery exactly when surgeon was sawing the bone to break big toe. (that was freaky). C-section my first surgery major blood loss had 3 transfusions. (that was a close one)
Currently I am unable to ambulate have a wheelchair which I cannot push due to very weak muscles upper body and torn rotator cuff. Failed fusion and now C8 problems with nerve root damage. Pain radiates down left arm to fingers. Both hands numb. Lumbar L3,L4,L5 & S1 daily pain approx 8+ neurosurgeons (have had 3 opinions feel I would not be candidate for surgery at this time) surgery may complicate situation rather than make it better.
So my final step is SCS and pain pump. Have had every therapy possible.
So as you can see I am scared to death. Do they knock you out for the trial? Due to the loss of my rt. vocal cord I am so scared of having tubes put down my throat for fear of losing left vocal cord. Right now I can whisper. I cannot lay flat as I choke on everything even my own saliva.
I am sorry this is so long and I know I probably sound like a baby. I know I should be proactive in my own disabilities and I am only 49 believe me I would so like to have a quality of life because right now I can't say my life is all that great with the exception of my wonderful husband who makes life happy for me as much as possible. I tell myself everyday to have a positive outlook and I pray alot. I also read the posts on this site and there is such an outpour of love and compassion.
If anyone can share their experiences and I am a realist so please be honest and don't sugar coat anything it would be so helpful for me. I don't post often but I really need help and I know I can ask for it here. Thank you so much for any feedback.


  • I can completely understand the fear of "what went wrong this time". In fact I bet there are many on Spine Health who can understand that fear. It is something that the docs have to take seriously and it sounds as if yours are.

    So are you going for a trial of not only an SCS, but a pain pump? Or are they trying to figure out which would work best for you?

    From the way it sounds, any improvement that can be made for you, is a point in your favor.

    For the SCS trial and implant surgery, intubation was not necessary. I had a nasal cannula for O2 and my face was positioned in a surgical cutout so I could speak to the rep and doc and let them know what I could or could not feel. This was so they could position the leads correctly giving me stimulation in the correct areas.

    You might have to figure out a plan for communication ahead of time if you are concerned that they won't be able to hear you.

    I have found my SCS to be worth more than it's weight in gold! The trial and the implant surgery were not difficult for me and I healed up rather quickly.

    Can you use your arms and hands at all? Do you have any manual dexterity? One thing that comes to mind, is the operation of the remote for adjusting the SCS and turning it on and off. Might be another thing to consider.

    I hope this helps. You are not alone in this and we are definitely here if you need us.

    Kindest Regards,

  • Dollar short.

    I want to put this here anyway. Like C said for the trial you will have you face in a donut hole pillow so you can talk while they place the SCS lead.

    I think the pain pump catheter is placed much the same way.

    For the permanents, no intubation was done on me at all. They don't need to, they just do what they call twilight anesthesia. They put you to sleep or close to it, place the lead, then they increase the anesthetic enough to put you to sleep and do the IPG implant. I suspect that they do the pain pump the same way. Especially if you give them your concerns. I'm sure they would understand your fear of losing or damaging the one remaining cord.

    I hope this helps. I hope they can bring you some relief.
  • I appreciate the information you posted. I have a few more questions if you don't mind. Since I have the major issues cervical, lumbar and rt shoulder area do you know if they can hook all these areas up at the same time. I really know nothing of this procedure accept for the fact that the feeling you get is supposed to distract the pain feeling.
    Unsure about pain pump also. I did have the opportunity to talk to a man who had the pain pump. He showed me the size and where it was placed on the side of his stomach area. His was for lumbar area only. As I said due to my issues in the past I am really scared about having anything put in my body, yet I am willing to do almost anything to be proactive in finding something that would ease the pain. Again thank you so much for your posts.
  • I was told by one PM doc that it may be possible to program a cervical SCS to cover shoulder, arm and lower back pain. I remain skeptical about that since I have the ability to reprogram my system and in order to really get any lumbar relief, means I have to drive the signal too strong for comfort in the cervical area. I believe the other docs who say it is just better to implant two separate SCS systems.

    The SCS is in a manner of speaking a "distractor". It is also a way of triggering your bodies natural endorphins which helps with your general feeling of well being.
  • Hi Jan...
    I have had my pain pump about 12 week now and am thrilled with the pain relief it has given me.
    For my trial I was in Hospital 3 days. But all Doctors do not do their trial the same way. Some trials are for a week with a temp external pump.
    I had a temp catheter placed in my spine(I was awake)and each day my Neurosurgeon gave me one shot of Diladuid through the catheter...then it was clamped off. The first shot did not help me that much so the second day he gave me a larger dose of Diladuid(I can't take morphine)That one did the trick. I had no pain while sitting or laying down but still some pain when on my feet. The third day he wanted to try morphine and I agreed but it did nothing for my pain. (I had savage pain in my feet and legs) Then the catheter was removed.
    The down side to a pain pump is the size. It is about the size of a hocky puck and placed in your side at about your belt line. It does protrude a bit but does not bother me. Refills are made with a needle through the skin. It has a self sealing port in the top. You must go in every few months for a refill and in the begenning you must go to have the dosage upped a tiny bit until they reach the "magic" dose. Because the meds go directly to your spinal coard it takes a much smaller dose than oral meds and does not go through your system as oral meds do.
    There is also a slim chance you could get a spinal leak and have a very bad headache. The leak can be "plugged" with your blood. I was scared to death that I would get a spinal leak but I did not.
    For the permanent implant you are asleep and spend the night in Hospital although some Doctors send you home that same day.
    I had some surgery pain for about 4 days but you will be given oral meds for that. I also spent 3 days in Hospital because I did not want to wake up. I guess I needed the sleep.LOL
    For the permanent implant you will be on the same restrictions as with the SCS. No bending, reaching, twisting or lifting anything over 5 lbs for about 6 weeks. You will have a band to wear to keep the pump in place until it scars in place. The battery last 5 years(same as with the SCS)then it has to be replaced.
    My pump has given me my life back!!
    Best of luck. I do hope one of these devices gives you relief from your pain. If I can answer any more questions please feel free to ask.
    Sending a hug >:D<
    Patsy W
  • Jan

    Just to clarify, the life of the batteries inside the SCS systems vary from approximately 5 years up to approximately 10 years depending on the model, the amount of use and other various electronic issues.

    Of course there are those who have gotten "lemons" that didn't last even the minimum life span, but those are anomalies and not the norm.

  • I was reading your comment again and noted that you can't lay flat because of problems.
    I just wanted to add that for my trial placement of the catheter I was on my side and awake.
    Fot the permanent implant I was still on my side but asleep but do not think any tube was down my throat.
    You do not have to do anything to the pain pump once you have the permanent implant. Your Doctor takes care of everything.....increases done in the office by the aid of a computer. For refills I go to the Hospital.
    Hope this helps.
    Best to you
    Patsy W
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