Forum Replies Created

Viewing 4 posts - 1 through 4 (of 4 total)
  • Author
    Posts
  • Carla
    Participant
    Post count: 5

    My options are so limited. I’ve had reactions to lyrica and neurotin. Cymbalta makes me suicidal. Other antidepressants make me feel like I’m losing my mind. I can’t take NSAIDs because I have Crohn’s disease, and they cause bleeding in my bowels. I can take Tylenol, but that causes liver damage with long term use. I’m currently taking a new antidepressant, Brintellix, and I haven’t noticed any changes (for the better or worse, so at least I can tolerate it). And I take hydrocodone on my horrible days and use a TENS unit. Otherwise, I grin and bear it…just getting through one day at a time. I really wish there were something to take my pain levels down, but my best days are a 5/10, and my worst are a 9/10. Over time, I think I’ve just gotten used to it. I know that I’ll never be pain free, but I only wish for more good days than bad ones.

    Thank you for you commitment to informing patients. It really means a lot to those of us on the receiving end!

    Carla
    Participant
    Post count: 5

    Bobg1949,

    Thanks for your reply. I hate that anyone has to experience AA, but it is somewhat comforting to know that we’re not alone. Chronic pain will certainly wear on your nerves. I find myself getting irritable when my pain levels are high. I have to give myself a time out to rest my body and my mind. At this point, I rarely take narcotics and choose to push myself through the pain. I only take them on days when I cannot function. I have days when the pain is so unbearable that I can’t get out of bed. Those are the days when I cave and take pain medication. I hate the thought of relying on medications for quality of life, but I know it’s an unfortunate reality. In light of all the CDC and FDA regulations, I’ve chosen to do my best to stay off medications…at least as long as I’m able. I know most are unable to do that.

    I do, however, find that steroids help quite a bit. When I’m really bad, my doctor will give me a steroid shot. Those definitely help with the inflammation. My back continues to swell off and on – a baseball sized area. When the swelling happens, I have trouble urinating, and the pain is severe. I had to go to the ER recently for this, and it is all stemming from nerve damage in my spine. I just pray that it doesn’t continue to progress. In the meantime, I live one day at a time and try to make the best of it. I don’t know if I’ll be able to walk tomorrow, but I can today…and that’s what matters.

    Carla
    Participant
    Post count: 5

    And I’ll be honest, I’m terrified of spinal stimulators. All the research I have read indicates that they aren’t very effective with arachnoiditis pain; and they are generally short term in relieving pain, as the body adjusts to the stimulation and it becomes less effective over time. My husband had a personal experience with SCS, which has me very leary of the techbnology, as well.

    And unfortunately, I’m leary of pain management doctors. My pain has always been there, but it was exaccerbated by epidural steroid injections post-laminectomy. Two steroid injections and a nerve block trial all resulted in a spinal headache, vomiting, etc (and a doctor arguing with me that there was NO way I could be having those symptoms…that he did NOT make mistakes). And my MRI pre injections indicated no arachnoiditis. Then amazingly, months after injections, it’s there. My current surgeon told me that if the AA wasn’t caused by the injections, it was certainly made a lot worse by them.

    Perhaps if I found a pain management doctor I trusted, I may consider a SCS, but it’s not like you can really visit too many trying to get a feel for a good working relationship because then you’re accused of being drug-seeking. As a patient, it’s a very frustrating position. I just want to feel better. I just want to contribute in life.

    Carla
    Participant
    Post count: 5

    Dr. Corenman,

    Thank you for your reply.

    I had an MRI in August 2015 which resulted in the AA diagnosis, and that it when I found the true failure of my precious L4/5 laminectomy of September 2013. What had remained of my disc collapsed, and I had very little to no disc space, resulting in pinched nerves, etc. I did physical therapy for 6 week with no improvement, so I had a L4/5 fusion in December 2015. Prior to the fusion, I had severe left foot drop, and my left leg was numb from the knee down, severe left leg pain and back pain (but the leg pain was 10x worse).

    The fusion helped tremendously. After a few weeks, I had regained some feeling in my left leg, the foot drop improved, and my leg strength improved. The pain in my leg and foot, however, worsened.

    In February, I had a large area (the size of a soft ball) swell out at the spot of my fusion. My pain levels went from manageable to feeling like Satan was repeatedly stabbing me with a pitchfork. My leg pain can be unbearable at times. My foot drop is back (not quite as bad as pre-op, but causing me problems with walking). My leg is numb again. So, I was sent for an MRI on 2/26.

    I just had my follow-up with my orthopedic spine surgeon, and he indicated that everything looks okay. All the hardware is in place – thankfully! I do have some minor inflammation, so he started me on a round of steroids, and I’ll be starting physical therapy soon. But he also said that, even though my spinal cord is tethered from L4 down, he’s not convinced that all the problems are from the AA. If there are no other physical abnormalities in my spine and surrounding areas, what else could it be? Because I know with 100% certainty that this pain is not in my head.

    I’m only 36, and I have a life to live. I just want to be as pain-free as possible, understanding that I’ll never really be pain-free. I don’t know what to do at this point. I have faith that the steroids and physical therapy will help, but how much help…only time will tell. Do I request a second opinion of my recent MRI? Or do I wait it out and hope things improve? I would like to get back to actually living my life, rather than scheduling around my pain and inability to sleep.

    Thank you,
    Carla

Viewing 4 posts - 1 through 4 (of 4 total)