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Upcoming SCS Trial -- Need Input !!

RRraeRRRrae Posts: 85
edited 06/11/2012 - 8:40 AM in Spinal Cord Stimulation
For 5 yrs I have been suffering from what I'm told is "Small Fiber Peripheral Neuropathy/Radiculopathy" in BOTH legs with no 'known cause', so I'm 'idiopathic'.
I describe the pain as severe BURNING. It is piercing pain at the knees, radiating outward as burning. In full flare mode it feels as though each leg weighs 200lbs! It is getting more difficult to walk or stand for very long and VERY painful when going up stairs.
Bloodwork did reveal severe HyPOthyroid. I'm taking Sinthroid 125mcg/day for that.
It has been a very tedious process of elimination as far as getting a clear diagnosis (which I'm sure most of you are aware). No auto-immune factors, No injury (except for the fact that I DID have surgery on my left hand due to fracture). This is within 3 or 4 months of the neuropathy onset. At that time, I had joined a gym and was trying to get back in shape from the hand fracture and went a bit overboard on the treadmill (walking 100 miles/month).
THIS is when I noticed the severe knee pain onset, which has progressed to consume the entire legs. SO
it would seem that the overuse of the legs would be the culprit. I must have damaged the nerves.
I've tried all the standard meds targeting Neuropathy (Neurontin, Lyrica, Amitriptyline....) to no avail. I currently use the Fentanyl 100mcg patch, and Hydrocodone for breakthru. Without these meds, I most certainly would have lost my mind by now. But I desperately want to get off of the strong narcotics. I am aware that the SCS is not a cure. But if i have success with it, I am hoping to be able to cut wayyy back on the drugs so that I can live a normal life and be a better wife and mother to my family.
Input would be MUCH appreciated! Good OR bad. Does anyone else get relief from SCS for bilateral leg pain, or do most have back/surgery issues?


  • What is the link? I can move it to here for you and delete it from there.


    Post edited at the request of the original poster. Text taken from another thread and brought over to this new one. Authority Member neck of steel (cindy)
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • It's post #5 on the thread right below this one entitled "SCS and Solo Travel".....my post SHOULD have been a new thread. It's entitled "Upcoming SCS Need Input".
    Thanx Cindy
  • You are very welcome!
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • Welcome to Spine Health. Sorry to see that you have been through the mill with your legs. I certainly hope that the docs can figure out a way to help ease your pain. Has the doc come up with any ideas why the walking on the treadmill might have caused your leg pain? I do 25-30 miles a week on mine and it helps me to feel tremendously better. Were you doing anything drastic with the incline and holding on, where it would cause your pelvis to shift? Just thinking out loud here.

    I believe that the majority of SCS patients here have had some if not multiple spine surgeries to correct problems. Some were left with pain from damaged nerves which the SCS can do a nice job of helping to manage the pain.

    Some of the things to consider when it comes to an SCS for bilateral leg pain, is the type of lead or leads required to provide adequate stimulation. More and more docs are going with tripole paddle leads so they can target leg and back pain better. Some docs are stuck in a rut and do nothing but percutaneous leads, which especially in the lower back, tend to migrate and change the stimulation pattern.

    Have you spoken to your doc as to what his idea or plan is for you if your trial is successful?

    Read through some of the stuff on this site and prepare a list a questions and concerns and take that with you to your appointment. Don't hesitate to ask any questions. This is a big life changing event, not something to take lightly.

    Kindest Regards

  • I very much appreciate your input. Back when doing the treadmill thing, i got too ambitious and jumped in too 'headstrong' and didn't stop to realize that my aging body wasn't capable of the demand I was putting on it PLUS i wasn't wearing the proper shoes for that strenuous activity. Shear stupidity on my part.

    Thanks for the 'heads up' on the type procedure the leads will be placed. It will be dual leads percutaneous probably around the L3,L4 region. SO i will definitely ask about lead migration ,etc.
    Does a neurosurgeon have to be the one who puts the paddles in, or can an anesthesiologist do that?
    Thanks again for sharing
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