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Neuropathic pain in left side inc. genitals from SCI C5-6 (Feel alone)

I am new to this site looking for anyone to talk with who may have similar pain or anyone in general...Over the past 10yrs I have looked around on the internet for forums but most seem to be more about drug use rather than people really suffering from chronic pain. I know that sounds harsh as I am very aware of how easy it can be to over do narcotic pain meds when in pain, depressed & bedridden. I was very naive in the beginning & did not take my 20mg Oxycontin the way it is prescribed & instead took it when I was hurting & ran out...However, i did know I could not ask for more until the refil date but I had no idea what withdrawals were...I LEARNED A VERY HARD LESSON!! From that day forward my wife & I bought a safe & she keeps my meds in there & lays them out for me each morning. I am no longer on Oxycontin although I was up to 30mg twice a day before coming off a year ago as they were not really helping me. I still take 10/325 Oxycodone (Percocet) twice a day...I actually split the pills & take a half every 6hrs which seems to work better.

I have suffered from neuropathic pain for over 10yrs now...since about 2004. My pain runs down my left side (exactly left of center) from chest to left foot getting exponentially worse the lower it gets leaving my foot feeling like it is either sitting in bed of hot coals or in a vat of liquid nitrogen (burning cold). However, the most debilitating pain is probably the left side of my penis, scrotum & anus...If I sit still with the right clothing on I can get comfortable but as soon as I try to move & things start rubbing together it gets very uncomfortable to painful! This is one of the main reasons why I have been in a bed or in a recliner for the past 10yrs. My wife & I cannot be intimate at all due to the fact erections are beyond anything else the most painful thing I have to deal with! Even soft touch on my left leg is extremely uncomfortable to painful & the feeling of being touched will linger for minutes to hours depending on the situation.

I am very lucky to have a wife who truly loves me & does everything she possibly can to create an environment in which I can be as comfortable as possible. Despite the fact she is disabled herself from a near fatal car wreck a year after we were married...She was in a come for 38 days due to severe TBI Traumatic Brain Injury...She shattered both legs (rods to repair), shattered her left hip (replaced), pelvic bone (plates), left arm several plates & her face & skull had over 200 fractures that required over 125-150 small titanium plates & screen to repair including an orbital fracture & her lower jaw being broke in 8 places. She has made an incredible recovery over the years but is still permanently disabled much like a stroke victim with her left side being severely impaired...But she has been very lucky to escape without any chronic pain probably due to the fact she had her seat belt on & did not injure her back or neck! CRAZY LUCKY! However, her drive to rehab & get back to "normalcy" was that of a Hollywood movie as she did not allow anything to slow her down...She is my HERO!! I will not lie we had struggled at first dealing with her brain injury being so young 24yrs old...It robbed her of her University education 4yr degree & she was not sure who I was in the beginning but we pushed through it. Only to be knocked back down with my spinal cord injury!!

I have a small 1/4" white mark on my spinal cord visible under MRI where my spinal cord was damaged due to a slipped disc & I have been in a bed for 10yrs yet my wife's entire body was crushed & she rebounded...This weighs heavy on my mind all the time despite the fact I know why. Although, this feeling of not being able to recover as she did has waned over time especially lately as my pain has drastically increased which tends to refocus one's attention.



  • pinkfloydpinkfloyd Posts: 70
    edited 09/24/2014 - 5:21 AM
    I definitely think the female of the species is a lot more robust than us men .I have read your post and I note with interest parts of it that I can relate to .the feelings of hot and cold burning even crushing feet/legs and knackered genitals and the feeling that you would not want anyone near them even if they worked due to over sensitivity of your skin .I commend you for coming of oxycontin its a double edge sword the drug that it very powerful but very addictive I know you don't want to talk about drugs .nor do I
    the problems you have I have many of them and have done for many years I have been told by my consultant that the nerves are finished and won't get any better ..I have tried many things to help with the pain ,.but now only meds work and only to take the top of the pain and disability .I am now resigned to the fact that I am on a slow decline and there is nothing I can do about it ,.I was recently diagnosed with arachnoiditis and CES I also have facet joint degeneration and I have had 4 spinal operations including a multi level fusion .I posted just to let you know you're not on your own ,if you want to chat privately please PM me
  • Look forward to talking to you more in the future.

  • Have you considered spinal cord stimulation to ease the neuropathic pain? It is an option to consider, since the majority of your pain seems to be neuropathic in nature, it would be worthwhile discussing with your pain management doctor.

  • AJ711AAJ711 Posts: 5
    edited 09/28/2014 - 5:03 AM
    sandi said:
    Have you considered spinal cord stimulation to ease the neuropathic pain? It is an option to consider, since the majority of your pain seems to be neuropathic in nature, it would be worthwhile discussing with your pain management doctor.
    Thanks...I have already done the stimulator trial twice...It did not help. The "buzzing" feeling kinda mask the pain in way but was uncomfortable regardless of how it was positioned or what setting it was on. It is one thing to have the "buzzing" in my leg to mask the pain but my genitals, NO WAY! When I turned it off the pain would rush back in worse than before.

    I have also done the Prialt trial 3 times...Once before I had a pump surgically implanted for Baclofen & twice since then...I can't handle the side effects & I felt no reduction in pain. Of course, they have tried Morphine in my pump which they started out low dose but as they slowly increased the dose it began making my pain worse & giving me really bad headaches! So they removed the Morphine & I had to deal with nasty withdrawals for weeks despite the fact the doctors were VERY LIBERAL with the Percocet 10/325 4-6 a day to ease the withdrawals. My doctor wants me to try Dilaudid in the pump since it seem to work really well for my pain during an hospital stay I had after my last surgery...But there is no way in hell I am putting another narcotic in my pump as there is no way to ease off or titrate down from main lining narcotics into your spinal fluid & brain. LOL! I guess I am a wuss compared to others but I can't take withdrawals...That is the most uncomfortable/painful experience I have ever been through!!!!!

    So far the ORAL drug Topomax 50mg once a day at bedtime has been leaps & bounds better than anything else I have tried.

    I am very lucky to be a patient at EDITED have been through every procedure out there so multiple times...Shy of Brain Stimulation...Which has been discussed in passing but still a last resort.

    Post edited to remove the name of the medical facility. Posting / naming of physicians or medical facilities is not permitted on Spine Health forums.
  • in the pump......everyone that I know that has tried it has had major issues with it's use in their pumps.
    Did they check the catheter placement to ensure that there wasn't a leak when you got the spinal headache? If the catheter moved or was displaced somehow, that could have been the cause of your headaches with the morphine. Or it may simply be that you don't tolerate morphine either.
    You don't have to withdrawal even if they remove the medications from your pump, they can convert you to oral medications, and taper you off, using the same medication or a different one instead if the medication in your pump is not helping you.
    Dilaudid might be worth giving a try, even though you said that you don't want to .....The thing with the pump is that the dosages do have to be slowly increased, in tiny increments since it is sent directly into the spinal fluid, and it may be worthwhile giving dilaudid a try. If it doesn't work, talk to your doctors about tapering you off , using oral medications instead of forcing a cold turkey withdrawal....
  • Relating to the groin pain and burning... for me this is one of many different problems but after having surgery three times on my testicles I have resorted to injecting Polocaine into the scrotal sac! My PM doctors did it a couple of times but they soon found it very uncomfortable to do so then they had a female NP do it and she too couldn't handle it so! They taught me to do it! These things have to be done very slowly!
    For me the right testicle hurts more then the left!
    But! It appears everything of this nature has to be done bilaterally because if you only do one side then the other side soon complains! I tease and say they get jealous for attention! I do this on several parts of my body! The injection breaks the pain cycle for a while ( 8 -10 hours) and I think it gives my body a chance to become familiar with less pain, kind of a learning thing..I don;t know for sure why but I used to have to do this treatment 2 or 3 times per week and now it's 2 or 3 times a month, its something that's been done over the past 20 years so it's certainly no quick fix!
    I've used ice in the past and that can really do some major damage! And is very short lived relief.
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