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    Failed fusions
    clrsk posted:
    I have 2 failed fusions 9years of pain meds now they want to do scs what to do they dropped my meds from 30 mg 6x a day to 10 mg 4 x a day need help
    cweinbl responded:
    I've had four failed spine surgeries, including multilevel fusion. I've devoted the last 25 years to researching spine-related trauma and disability, along with viable treatment modalities.

    The SCS is only for patients who have chronic leg or arm pain and are unable to benefit from normal long and short-acting pain medications. If your pain medications were helping, and you had not yet reached the maximum safe dosage of both long-acting and breakthrough medications (plus anti-depressants and anti-convulsants), then you are NOT a candidate for SCS. Sadly, many patients and physicians give up far too soon on combinations of opioids and off-label drugs (anti-depressants and anti-convulsants). Again, the goal to manage the pain, not to eliminate it.

    Be careful what you wish for. Many of us have significant spinal nerve root damage, fibrosis, stenosis and osteoarthritis that require high dosages of powerful opioids. Sadly, many physicians are reluctant to prescribe the dosages of potent opioids that can significantly reduce our pain. They refuse to give us the most powerful drugs or if they prescribe them, it's in far too small a dosage to help. So, we grasp for anything that might help like the SCS or the IT Pump.

    Sometimes when we demand something new and different as a treatment for chronic spinal pain, we end up with even more pain and with a mechanism surgically implanted that does not help at all. The success rate for the SCS with patients who have had prior spine surgery is about 60% (;12;699-802.pdf ), especially prior fusion. That, ironically, is the same deplorable success rate for spine surgery in the first place.

    Bottom line... before you ask for something different for your chronic spine-related pain, do your research (see above). Otherwise, you may find that you no longer have access to the pain drugs that really were helping, although perhaps in too low a dosage. And you'll end up with a mechanical device implanted in your body that doesn't help.

    Chronic severe pain can be managed, but only by using the most powerful opioids at appropriate dosages and off-label drugs in combination with mind-body treatments like biofeedback. Asking for something different in exasperation can often result in the loss of pain medications that really were helping in the first place. Be careful what you wish for.

    Most of us with chronic severe pain will never again be without it. Nothing will eliminate it. Our job is to learn how to MANAGE the pain - how to reduce it with a combination of medications and other treatments - not eliminate it. This can and should include mind-body treatments like biofeedback, systematic relaxation, meditation, acupuncture, TENS, combinations of opioids and off-label drugs, PT, kinesiotherapy, hypnosis and all other non-invasive options. When all of those fail, we can consider more invasive options, such as injections, SCS, IT Pump and surgery. But the success rate for surgery is still around 60% (lower if you have had prior surgery).

    The best pain patient is the informed pain patient. Make sure that you have done your research!
    abbi5 replied to cweinbl's response:
    I had spinal stenosis, etc. and had back surgery. L3, L4, L5 were fused with rods on either side. Pain came back. Diagnosis: failed back surgery. Many years of injections, ablations, etc. Had SCS implanted. My back pain is gone!!!! So SCS may not have worked for you, but it sure has worked for me!
    ctbeth replied to abbi5's response:
    Post multi trauma c-spine fusion C4-7, L-4-S1 fusion FAILED with spinal cord injury

    Multi med therapy, Rods, plates, screws, ad nauseum, Nerve ablation, Physical therapy, Calmare,

    The only modality that has been successful for relieving pain is Spinal Cord Stimulation.

    Like abbi5's experience,

    SCS may have not worked for some, and I don't think that Cweinbl has tried SCS (am I correct, CW?), but it has worked for me.

    If someone offered me a million dollars to have my SCS taken away, I'd the,l this hypothetical person no. Keep your million and I'll keep my SCS.

    One very-important factor in your decision is that the common standard for SCS is the temporary trial.

    Two leads are temporarily thread into the epidural space and are connected to an external controlled. This temporary system is kept in for three-to-ten days.

    The objective is that you'll have the opportunity to feel the sensations and know if they will be helpful for you.

    Of course, there is always risk of infection with any surgery. SCS implantation is commonly an out-patient procedure.

    The sooner you're out of the hospital, the better your chance of resisting infection. You'll also have an IV antibiotic infused during the surgical procedure.

    My surgeon also prescribes antibiotics by mouth for ten days post implant.

    You'll have to decide what is best for you, but SCS is the best decision I've made regarding pain management.

    I've been able to comfortably decrease my opiate requirement by over 50% with SCS.
    abbi5 responded:
    I had spinal stenosis, etc. and had back surgery. L3, L4, L5 were fused with rods on either side. Pain came back. Diagnosis: failed back surgery. Many years of injections, ablations, etc. Had SCS implanted. My back pain is gone!!!! So SCS may not have worked for you, but it sure has worked for me![br>A.
    shershersher replied to cweinbl's response:
    I, too, have had multiple fusions. L3, L4, L5, and 1 neck fusion. I have just completed 2 months of PT, and almost went to the ER with pain related to my last session yesterday. I was seeing a pain specialist, but was dismissed after failing to report taking 1 Valium after the death of 3 family members. I simply forgot due to all the stress.

    Also, I discovered that the Fentanyl patches slid off with perspiration during daily walks. My MD was prescribing 7.5
    Hydrocodone, 3 daily, and now has refused to refill due to new Alabama regulations.

    Do I just give up, and become bid-ridden? Any suggestions would be appreciated. I am 58 and on disability due to back pain.

    Should PT aggravate the situation so much?
    ctbeth replied to shershersher's response:
    His Sher,

    I'm wondering if you're being treated with PT because you're still in the post- op recovery from either of the fusions.

    Unfortunately, whatever the reason, albeit appropriate, violating our med contract or agreement (I'm going to suspect that you had a contract as you were probably urine tested and this commonly means contracted) can be this proverbial "kiss of death".

    It sounds as if you realize that taking the Valium was a mistake, but, opiates and benzo mix can be dangerous, so your MD wasn't out of line for refusing to treat you.

    Of course, you need to find a new pain management MD.

    If you're recent post- op, you may experience less pain as you heal.

    Please stay in touch with us and tell us how you're doing, if/ when you've found a new pain management MD, etc.

    I hope that this will work out for you,

    shershersher replied to ctbeth's response:
    No, CT. My surgery was 2 years ago, but I feel so much worse now after PT.

    I don't think any specialist in this city will see me...remember "the kiss of death"? Just icing down still trying to relieve the pain from my last session. Another wasted day.
    ctbeth replied to shershersher's response:
    Why are you continuing with PT if it isn't helping and causes increased pain?

    How stupid that, two-year post op, you'd be sent to PT.

    A new MD in my pain management group is rumored to abruptly decrease patient's pain med and send them to Tai Chi.

    How bloody stupid is that?
    ctbeth replied to ctbeth's response:
    I want to clarify a matter from my reply to abbi5,

    My c- spine fusion has fused fine. It is only my lumbar/ sacral fusion that has partially failed/ not fused.
    ctbeth replied to shershersher's response:

    If you click on my name or little pic, it will take you to "My Story"

    If you scroll to the bottom of that, you'll see my email address.

    If you wish, we can write in private.

    Do though, let me know if you'll be sending email as my SPAM filter is high and un- recognized email usually goes into my JUNK file.

    If I'm expecting email from a Wen MD member, I'll be sure to check the JUNK file.
    cweinbl responded:
    The SCS and IT Pump are for patients with chronic moderate to severe pain that does not respond to any type of pain medication or combinations of medications. Similarly, it is for patients who cannot manage their pain with physical therapy, kinesiotherapy, injections, Yoga, meditation, rhyzotomy, acupuncture, biofeedback or hypnosis. If NONE of these interventions help, then you might be a candidate for the SCS or IT Pump.
    Two factors with the SCS: 1) It is primarily for neuropathic pain; pain that radiates. If most of your disabling pain is not neuropathic but nociceptive (like mine), you're better off with the intrathecal infusion pump. The type of pain you have will help your doctor decide if you might be a candidate for the SCS or the IT Pump.
    2) Be certain to use the trial unit of the SCS or the IT Pump before making a decision. The trial unit is a small mechanism worn outside the body, with leads that go into your spinal nerve roots (with the IT Pump, it's with a catheter that drips an anesthetic solution on your spinal nerve roots). If the trial unit does not help, having a surgically implanted permanent unit makes no sense. You can also test the process to some extent by using a TENS unit. I wore one every day for six months. TENS is exactly the same principle as SCS, but without the risks of surgical implantation.
    Also, be advised that all surgery entails a risk of morbidity. There have been chronic patients who died as a result of contracting a post-SCS-surgery MRSA infection. Of course, this type of morbidity is rare. Still, before having any kind of surgery, including surgery to implant a mechanical device, do the research and know the risks.
    The most common reason for SCS failure is leads that are improperly placed or that move away from the nerve root after implantation. The most common reason for IT Pump failure is catheters that become crimped or blocked, or by reservoir pain drug that no longer works well over time. You will hear some people rave about these implanted devices and others who found it to be a horrible experience and who could not wait to have the devices removed. The average long-term success (12 months or longer) with these implanted devices is about 60% to 70%. I know that sounds nice to someone who is in chronic severe pain. But would you really want any other surgery with a success rate that low? Caveat Emptor!
    Here is a link to the best research I've seen related to spinal interventions, including the SCS, IT Pump and all other major interventions for spinal trauma and disease:;12;699-802.pdf .
    ayla930 replied to shershersher's response:
    I too live in Alabama and have been trying to find the "new regulations" that my PM clinic keeps referring too, along with new FDA guidelines. I haven't had any luck and wondered if you have actually "seen" these new regulations. They propose to decrease my medication doseage to less than half of what they have prescribed me since 2008. I have NEVER had a problem with a failed urinalysis, which is done every 3 months and I have had every procedure suggested by them. I would really like to actually see these new regulations that Alabama has enacted. Any information will be GREATLY appreciated and I wish you well.
    ctbeth replied to ayla930's response:
    Hi Ayla,

    I've not seen any new regulation except the change of hydrocodone from a Schedule III to a Schedule II.

    The scuttle among health care providers and professionals is that insurers have set some- sort of ceiling at 180 mg/ day of Morphine or the bio-equivalent.

    This is the "magic number", per my MD.

    Since my daily dosage is less- than 180 mg of Morphine Sulfate Continuous Release (MSC), my Rx hasn't been lowered or changed in any way.

    A friend of mine, who was taking extremely- high doses of a combination opiate therapy: MSContin, Methadone, and oxycodone.

    It has taken many years of tolerance to get him high dose, multi- agent regimen, but it works.

    His MD wants to get him down to 180 mg/ day, which seems insane. I don't know all of his doses, but I so know that his MSC alone was 900 mg/ day. He is so screwed.

    My MD and neuro- surgeon both limit implanted intrathecal delivery (pain pump) to end stage cancer patients. They both have told me that, with intrathecal delivery, tolerance occurs much more quickly than by mouth or intra dermal delivery.

    This is just two MDs opinion related to one patient (me), but before I had the SCS, when investigating the "pump", my MD thought that Fentanyl patch would offer the same pain management and wouldn't incur tolerance as quickly.

    I did extremely well on the fentanyl patch, then opted for SCS, and my pain med requirement decreased over 50% over six months.

    Pain- wise, I could have done fine with the lower doses immediately, but it took six months to titrate down and prevent those disgusting withdrawal symptoms.

    Shersher, how are you holding up?

    ayla930 replied to ctbeth's response:
    Thanks for your response Beth. The only regulation change I was able to locate was regarding the hydrocodone too. My pm clinic said that the new FDA guide lines state that the maximum dose for opiates, more specifically morphine, is 200 mg daily, and that is if morphine is the only medication you are on. They have had me on MSC 100 mg 3 times per day, 30mg oxycodone 4 times per day for breakthrough pain. In addition I am prescribed Neurontin (which gives me horrible side effects, so am on a low dose), 6 mg zanaflex 4 times daily through my pain management team. I am also prescribed 1mg Xanax 3 times daily from my family doctor. According to the letter my clinic sent out to all patients, the TOTAL of ALL medications prescribed will be reduced to the equivalent of 200 mg morphine per day. Like your friend, it took many years of tolerance to get to this point (along with a couple of MVAs). With my current meds and the procedures I undergo, I actually can continue to work, which is an absolute necessity for me at this point in my life. Needless to say, I am extremely upset. I have been assured that there will be no sudden decrease and it will take months for some of us to be reduced to the new guideline level, so I am not nearly as concerned that they will let those of us on the high doses suffer withdrawal symptoms, but I am extremely concerned that I will not be able to function at anywhere near my current level. There are still days now that it is all I can do to make it through a day of work, not to mention take care of anything else that needs to be done. I really don't understand. I can't find any new FDA guidelines. When I went to my appointment, I asked to see a copy of the new FDA guidelines, but my PA said he didn't have a copy. Quoting the letter I received " Insurance companies are also creating their own standards (which are, in some cases stricter than the state and national guidelines) for covering prescribed pain medications. The FDA has already placed limits on the maximum "safe" doses of all medicines. All of this along with other governmental forces (DEA, Affordable Care Act, etc.) seem to be driving these regulations." Do they exist???

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