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Running out of options. Ideas?

About 8 years ago i suffered a herniated disc between my L4 and L5 vertebrae. I had surgery to remove the herniated disc, and the doctor discovered that the disc had crushed my spinal nerves against my backbone. It all went downhill from there. Instead of the pain being sporadic, after the surgery it was constant and severe. A couple years later, I had a spinal fusion to try to stop some of the pain. Again it did no good. I have sciatic pain down both legs, though it is worse in my right leg. My back is in constant pain. It got to the point that i started having severe spasms that looked like a seizure because i couldn't deal with the pain. I even had to be admitted to ICU and put into an induced coma because they couldn't stop them. Besides the pain from the herniated disc i also have arthritis in my back and degenerative disc disease.

Now the doctors are telling me that i have nerve damage in my back from the herniated disc and that there is nothing they can do to help me with the pain. And i have tried pretty much everything. Besides the surgeries, i have had cortisone injections, epidurals, nerve ablation, spinal cord stimulator, acupuncture, physical therapy, and pain medications. For a long time i have taken gabapentin for the nerve pain. I am taking 900 mg 3 times a day which helps to a point. I was also previously taking methadone, but the magnesium levels in my heart got to a dangerous level and i had to be moved to morphine instead. I am taking 100mg of morphine 3 times a day. Because the morphine is not as strong as methadone, I am having a very difficult time with the pain. The pain is still strong enough that i am having a difficult time functioning at all, not to mention the fatigue is horrible. I am running out of ideas on how to deal with the pain and hate that i no longer have any social life of any kind. Just getting ready every day is a great struggle for me. I am currently applying for social security disability, which is difficult because it's for pain and i am still fairly young. If anyone has any advice i would love to hear it. I want my life back!!
Alexis Roeser


  • LizLiz Posts: 7,832
    edited 03/09/2014 - 8:15 AM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • pandqmamappandqmama Posts: 175
    edited 03/09/2014 - 8:24 AM
    Could you see if adjusting the program(s) on you spinal cord stimulator could help?

    On flare ups I go to physical therapy just to have her stretch me out, move my legs and arms in ways that they should but don't anymore.

  • treating nerve pain..........gabapentin is just one of the several medications used to treat chronic neuropathic pain, Lyrica, Cymbalta, topamax and several of the SSRI and tricyclic anti depressants work wonders when it comes to treating nerve related pain.
    Adjustments or changes in the stimulation patterns in the scs may also contribute to better pain control.
    The worst thing you can do is lay in bed and not get regular excercise and stretching , which also helps.
  • It's so scary to run out of options...have you told your doctor that you feel you have run out? Seen different doctors? I have found I get different options sometimes after I push a doctor for more answers, and seeing a new doctor has had new options suddenly appear. However, not all the doctors are compassionate, and going to someone new can be scary because you feel like it might be another let down. I hope something helps you soon.
    2000- spinal fusion, complete spine due to scoliosis
    2012- pain began, started treatment for chronic pain
    2013- install of pain pump, procedures to address complications
    2014-blood patch, spinal fluid leak
  • dilaurodilauro ConnecticutPosts: 9,874
    when it comes to nerve pain.

    The medications specifically designed to help nerve pain is your primary option. Gabapentin (Neurontin) and Lyrica are the two most commonly used Nerve pain is difficult to control. So much depends on why are having the nerve pain. The time between when discs are impinging a nerve root and the surgery to correct that is key. The longer that time period is, the longer it can take for the nerve pain to heal. For some, permanent nerve damage has already set in.

    People suffering with diabetes or shingles experience this type of pain daily.

    Options? Well assuming you have been diagnosed with nerve damage, I would want to have some EMG tests done to identify to what extent the damage is. But that decision should be something coming from your doctor and not you.

    There are always options. You might need to discuss all of these with your doctor. Pain medications are not the answer.
    For many a combination of eastern and western medicine can help. Relaxation and mediation skills can help a patient manage many different types of pain. Nerve pain can do some of the things you mention.

    One thing is for sure, you can not allow this level of pain to control your life. Once that happens, there is no telling what else could fail. I dont have an answer on how to manage this. I don't think we can eliminate nerve pain, but again, explore every option with your doctor. If they have exhausted their options, then you might just ask them. If you dont know, can you help me find someone that can potentially help me
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • philnoirphilnoir Posts: 52
    edited 03/14/2014 - 3:37 AM
    Use of low-dose ketamine infusion has had mixed success. I'm going to try it myself next month (long-term cervical and lumbar pain syndromes, opiate tolerant).

    It's relatively inexpensive, non-invasive (requires an IV catheter), and just may give you relief. It may be available in a university hospital setting pain clinic, for example, U of Colorado pain clinic.

    Post edited, URL removed, solicitation is never permitted at Spine-Health
    Ron DiLauro, Spine-Health System Moderator 03/14/14
  • Is it for nerve pain or specific to sciatica. I have similar situation but cervical. I am on Cymbalta,, oxycotin, oxycodone
  • Yes, according to the literature, low-dose ketamine infusion is has been used for all kinds of pain -- neuropathic, fybromyalgia-like, acute pain after surgery, and others. It is not specific to sciatica (I don't experience any sciatica, by the way).

    It is however a new treatment and not yet available everywhere. You can get more information by googling low dose ketamine infusion.

    Best wishes.

    btw, I think we're all tired of the pain :#)
  • I was on strong opioids that were hardly touching my pain. When they added in a muscle relaxant it made so much difference. Due to my injury I didn't realise my muscles were spasming so badly due to pain and injury. It took the Drs a long time to work out but it made all the difference.
  • For those interested in ketamine infusion, here's a study of studies from NIH Medline that reviews ketamine infusion therapy for different kinds of pain.

    (approved for posting by Ron DiLauro)
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