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Thread: neuropathy/cauda equina pain

  1. #1

    neuropathy/cauda equina pain

    I just passed my 6 year mark with my spinal cord injury. First the good news, i walk with a small amount of gluts/hamstrings/quads. (i spent two full years in the wheel chair but worked out incessantly, not in rehabs, but here at home. Thank God i had some return. I wear AFO's, as nothing below my knee has returned. No use of ankles/toes/, but i still hold out hope that over time something (motor) will continue on down.
    The bad news, i am nearly at my witts end with the pain.
    I once wrote in years ago about my pain, and the SCI nurse said since i was broken at the L-2, or cauda equina region, my pain would get worse over time.
    At that time i thought it couldn't possibly get worse, and also, i tried to believe i would not be a statistic and this pain would subside.
    It is not subsiding, but becoming absolutely debilitating. I still push myself to walk, be active, ride horses, but pay dearly for it afterwards, especially if i use certain motions with my body that must irritate certain nerve endings.
    I use Xanax, norco, and go off and on Neurontin as it makes me groggy, and gain weight. The small amount of muscles i have just can't carry that extra 10-15 lbs without fatiguing more quickly.
    As with all drugs, i am becoming immune to the small amount of relief they used to bring, and have resorted to taking the maximum dose the doctors will give out. (just xanax and norco). I have been to pain specialists. The last one suggesting i go get a pacemaker size piece of equipment that would go under my skin, hooked to prongs that would be put into my spinal cord above the injury site to disrupt the signals.
    That is not a option for me because darn it, one screw up and i could lose my ability to walk. Next pain specialist suggested a morphine drip, with, for lack of a better understanding, there would be a certain amount of morphine in a bottle outside my body, with a tube going inside my body to administer the morphine. I had this pain from day one in the hospital while i was on morphine, so i don't believe that drug is effective on this pain.
    Dr Wise, i read some of these posts, It is so sad. I am not seeing anyone with any answers, as i don't think from all i have read and experienced, there is anything to be done for this illusive pain.
    Did i miss something?

  2. #2
    I have tried every option available to me including the spinal stim with no positive results. The stim does work for some and not considered particularly risky, I'm Cauda Equina and ambulatory and the stim had no effect on my shakey walking or B&B. I tried unsuccessfully the pain pump but my B&B is so tentative I lost that function so failed the test.

    I have complications at T-6 as well and develop CP everywhere except my left shoulder arm and head, and progressively gets worse.

    Make sure you have tried EVERY protocol available, as most get some relief from the various protocols. I wish you peace.
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  3. #3
    Springville girl - have you and your pain doctors considered maintenance on methadone? What about Lyrica? I did not get relief from Neurontin, yet Lyrica clearly helped to some degree. What about taking Elavil, 25mg or 50mg at night? Have these choices been considered?

    Are you sure that you don't have non-neuropathic pain like a radiculopathy (nociceptive pain) that could be masquerading as neuropathic pain? I would be really sure that there is nothing 'surgical' or bony impinging some of your spinal nerves making things bad. Especially since you are active and walk and ride a horse. It can drive you crazy trying to differentiate these pains but it is an important distinction to make. The pain doctor won't be able to help with that but your neurosurgeon or orthopedic spine surgeon (if they are good) should be able to help there.

    I am sorry. Don't give up. I still suffer but am much better than I have been during the 8 years since my cauda equina injury from a burst L1 fracture.

    Keep looking for a way to cope with medication, distraction, surgery if necessary, biofeedback for chronic pain.......

  4. #4

    neuropathy? cauda equina pain pain!!

    I want to thank both of you for your suggestions. I did one month of methodone and it was like taking a placebo. Maybe i didn't give it enough time, but i was looking for some relief, anything, but didn't get any.
    Lyrica made me so loopy, even the smallest doses (and i have HUGE med tolerances) but for some reasons, that one made me dangerous on the roads, horseback, etc, so i quit. The neurontin, i can't say it does wonders by any means, just helps me sleep, relax.
    You did bring up something i have NO knowledge of that i will have to research after i finish here. I don't know what "radiculopathy is. I have Harrington rods from L-1 to L-3, (the L-2 was shattered and there is a HUGE bone spur there at the break site. (doctors didn't seem concerned) I have had two ex-rays over the last 4 years to see if it is growing, doesn't seem to be, but how could we find out if that spur could be causing the pain you are referring to. Or is a spur normal at a break site? AND, if they took it off, wouldn't another grow in it's place?
    i need to find a Dr in Southern California, or Northern, (San fran) that is familiar with SCI, nobody here is, i seem to be running my own show and i'm getting scared.
    Ok, just looked up Nociceptive pain on i phone (didn't want to lose u here)Looks like they have a difficult time differenciating between neuropathy and the other. IF, and it's a big IF, i could find a good neurosurgeon that cared to search,
    i was told i could not have a MRI because of the rods, (would cause the reflection). Is that true? If anyone here knows of a GREAT Sci neurosurgeon in So Cal, (3 hrs south of me) i need his name, please!! Again, thanks for your suggestions, i'll appreciate all i can get, i am on my 6th day in bed with this "go round" of inconceiveable pain, off the chart kind.
    Other days, i can fight through it, but not this type.

  5. #5
    Arndog, meant to say, i don't "hurt" at the break site, where i mentioned the spur is, this is a burning on my butt cheeks like i sat on the burner at burger king, and my whole entire lower body from hips down vibrates. You can actually see it vibrating, like my body is saying it just can't take this much pain. The norco helps the joint pain, hips, knees etc. Xanax, just helps chill me out, and no, i meant to say earlier, i haven't tried
    Elavil. Need to read up on that next.

  6. #6
    Good luck finding the right combo of meds. It's taken me six years of trying, and the pain clinic I go to has got me on MST Morphine 30mg, three times a day and 10-325 Hydrocodone twice as needed a day. I also take a muscle relaxant three times a day and 800mg of Gabapentin four times a day. Like most of the rest, I've tried more meds than I care to remember. I've been told that methadone is the next thing for me.......I'm trying to stick to what I have now. It's not the greatest, but it's working well enough for me to get some sleep and function.

    Again, good luck.

  7. #7
    Moderator jody's Avatar
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    well, I feel your pain. or at least I feel mine, and I proly get it. I have been getting some relief from fentanyl, but it mostly helps with the bone and belly pain. the stabies, and the broken glass feeling may get worse, or like for me, it may be better at times, and worse at others. I envy you still ride. and still living in cali. I am not doing either right now.

    I have recently tried medical grade cannabis.

    I have been saying for years that mj does not help me with pain, just helps me tolerate it, but there is MJ out there that has the ability to take the Nero pain away. For a temporary break in the pain, or burning stabbers, try a kinda hot bath at the end of a day at the barn. add about a quarter to half a cup of epsom salt. You bathe your horses in it to keep prevent sore muscles, It works the same way for people.
    Though I have not tried a nerve stimulator, I think that is the implant you describe, I have had something like it tested on me. it caused discomfort, and AD. the burn got to be intense any bump to my feet.
    I spent a few years in and out of a chair. an illness, or bed rest has sent me back to square one twice. neurontin did not work for me after a while. I agree dropping that neurontin weight has been beneficial for me as far as fatigue and fall prevention.
    I found morphine to not be useful for this pain. at least not a dose that would allow me to still function. The Fentanyl patch has its demons, but it is what has worked for me. nothing really helps the end of the day stabs as you unwind, it may though get somewhat better though over time. mine has.

  8. #8
    Moderator jody's Avatar
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    tried lyrica too, and it made me nuts. like panic.
    do you ride english? If you find your pain worse after riding, maybe try a sheep skin cover over your saddle. I find hard surfaces to be intolarable to sit on when the burn is on high.
    I hope you get some relief soon.

  9. #9
    Here is a fantastic spine surgeon at UCSF who did a complete revision of my spine and eliminated the nociceptive, radicular pain and changed my life to one worth living. Sig Berven. UCSF spine clinic. I'm in Reno, NV so SF was closer than LA. Maybe you need to see a good pain specialist who can inject lidocaine and steroids into places in the spine that can cause pain, like facet joints. This could be diagnostic to help you sort out what pain is from what.

    I am beginning to see that no one can take away the neuropathic pain, but I am grateful for having the nociceptive radicular pain gone. That was too much for me to bare.

    Methadone - you never were given enough of the drug if it felt like a placebo. You have to titrate it up till it takes the pain away. If Norco works, Methadone should do the same thing without the euphoria.

    Lyrica - did you stick with it for over 3 weeks? That is how long it takes to get used to it and the side effects mostly go away.


    Another thought. Look, these drugs have side effects. And you have a problem. You may have to deal with side effects, yes, I know you would not like to have side effects and you would not like to have neuropathic pain but you do.

    It is hard to accept this.

    Riding a horse with lumbar spine pathology seems dicey to me. There is so much pelvic motion when riding a horse, I wonder if your lumber spine is just grinding away , exacerbating your pain. I know, you LOVE riding horses, it makes you complete, you can't imagine not riding them. I feel that way about monosking.

    I am just thinking out loud about it.

  10. #10
    You also need really REALLY strong core muscles to take the impact off your back horse riding. First couple of years after injury I struggled with bad neuro pain and facet joint pain. I tried to be active but always seemed to make it worse.

    Now I do 3, 1.5 hr sessions a week in the gym. I don't go flat out, but take my time and make sure everything is with good form and weight I can handle so I don't stir up more pain. Lots of core and stability work. The extra strength in my core means I can take pressure off my back when doing all the active stuff. Has made a huge difference. I take low dose amitriptyline + voltaren + ditropan and the combo works for me to take the edge off remaining neuro sensations and stop bladder spasms so I can get a good nights sleep. Sure there are side-effects but overall I count my lucky stars that everything is under control.

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