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csw2@bex.net
I've had four failed spine surgeries, including multilevel fusion. I'm left with severe nerve damage, massive fibrosis (scarring), osteoarthritis and sciatica. But that's not the worst of it. Because my fifth lumbar vertebra collapsed into my sacrum, I cannot sit or stand for more than a few minutes without unbearable pain.
Comprehensive pain management programs can help, at least a little. They offer things like:
TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injections, rhyzotomy (radio frequency denervation), spinal cord stimulator, intrathecal infusion pump, off-label medications (anti-depressants, anti-convulsants), combination of long-acting pain medication with breakthrough meds, counseling, hypnosis and meditation. To be honest, most of these won't help, or if they do, it won't make a huge difference. But I'm glad that I learned how to use biofeedback. It can reduce my pain by 15-20% at almost any time.
Beyond a pain management program, you might need to get used to using powerful medications for a long time, or the rest of your life. If you don't have serious problems with side effects, you can use these medications safely for the rest of your life.
Finally, people like us must develop a good perspective. I was a vocational rehabilitation counselor for seven years. I worked with paraplegics, quadriplegics and people with terminal illnesses. Compared to them, we are lucky. We might be in constant pain, but almost all of us can still take care of our own bodily needs. We can stand and walk and millions of people will never be able to do that.
Good luck!
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csw2@bex.net

csw2@bex.net
There are two important things to comprehend here:
1) A Fentanyl Transdermal patch will likely not provide the same plasma level after 48 hours. Thus pain returns and becomes severe. Many physicians will allow you to change patches after 48 hours, rather than 72 hours. All you need to do is ask. It's not unusual. Some patients change the patch daily because they develop contact dermatitis under the patch. You likely will not even require an office visit for this. Just call, say that you get no benefit from the patch after two days. They will understand and change your Rx accordingly.
2) Virtually everyone on long-term opioids will experience tolerance. It can easily be managed. Ask your doctor if the dosage can be increased. Physicians respect the tolerance factor and will be cooperative. After you have reached the maximum safe dosage of an opioid, your doctor will recommend that you rotate to a chemically different opioid for a while. After several weeks, you can return to the original drug (Fentanyl) with much greater efficacy.
If you cannot benefit from oral, IV, IM or Transdermal opioids, your doctor might recommend either the spinal cord stimulator or the Intrathecal Infusion Pump. Both require surgical implantation of a mechanical device. There is morbidity with any surgery, in addition to the possibility of improperly placed catheters and leads, crimped or blocked catheters or medication that loses effectiveness. It's a last resort option.View Thread
csw2@bex.net

csw2@bex.net
I hope that you do not fear addiction, because the rate of addiction among chronic pain patients without a history of addiction disorder is under 2% (http://www.ncbi.nlm.nih.gov/pubmed/20091598?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1 ) and http://updates.pain-topics.org/2011/01/study-finds-low-risk-of-rx-opioid-use.html ).View Thread
csw2@bex.net

csw2@bex.net
Second, no one should EVER stop using an opioid cold turkey. Many people are hospitalized and some die from going cold turkey on a pain drug, especially if you've been using it for along time (ex. "three years").
You need two things. The first is a schedule from your doctor for gradually decreasing your dosage of Oxycontin. It can easily take two to three weeks to decrease your dosage in scheduled increments, based upon your doctor's recommendation.
Second, you should know that there are efficacious medications that assist people in decreasing opioid medications. Drug like Suboxone and Nalaxone can make this process much easier. Ask your doctor about using an OPIOID ANTAGONIST to help with withdrawal symptoms.
If you decide to go cold turkey, please do it near a hospital. After three years of daily administration of Oxycodone, stopping it completely will put you in danger of serious complications and possibly death. You ask if you should be "worried about going cold turkey." My answer (and I know a lot about this as a clinician and as a patient), you are risking your life. Under the best scenario, you will break out in a sweat, you will feel your skin crawl everywhere, you'll be nauseous and possibly vomit. You will experience significant pain and likely also severe headaches.
People die by going cold turkey. Why would you want to do that when there are extremely valuable medications to treat the withdrawal symptoms?View Thread

csw2@bex.net
Achieving maximum pain management is a complex and difficult process. You and your doctor must embark upon an exploration of all potential pain drugs. If you are patient, after nine to twelve months of regular changes, you'll discover the best combination for your unique body chemistry. The operative word here is COMBINATION.
To manage severe chronic pain, most people require two different drugs. The first is a long-acting pain medication (Oxycontin, Kadian, Fentanyl Transdermal, etc.). THEN, you may also require a competent short-acting drug (Hydrocodone, Oxycodone, Codeine, etc.) for breakthrough pain. Thus discovering which long and short-acting pain drugs work best for your unique body chemistry is the most essential process for you.
It can take many months, even years of alternating from one to another, to discover which long and short-acting medications are best for you. So, you'll need a sympathetic doctor willing to try a wide variety of long and short-acting pain medications. Eventually, this experiment will work. You'll know which combination is best for you.
Sadly, over time you'll become tolerant to one or both of those medications. When that occurs, you must rotate to a chemically different medication. But at least you'll know which combination is best for you. After alternating for a few weeks, you should be able to go back to the original medications.View Thread
csw2@bex.net

csw2@bex.net
Anyone with moderate to severe pain will suffer unbearably with non-opioid ("narcotic" is a meaningless and misused word word today). Opioid is more appropriate. What is wrong with managing chronic severe pain with the most powerful pain medications? Unless the patient has a history of addiction disorder, the odds on becoming addicted are well below 3%. Here are the details for the tiny addiction potential: http://updates.pain-topics.org/2011/01/study-finds-low-risk-of-rx-opioid-use.html and http://www.ncbi.nlm.nih.gov/pubmed/20091598?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1 .
Opioids are natural substances in the body. They bind with opiate receptors in the brain. One can safely use an opioid for decades while encountering no major adverse reaction beyond constipation, which is easily treatable. I know many such individuals. The powerful pain drugs allow them to retain employment and to do important things with loved ones.
Please allow me to be blunt. Many of us who have had constant moderate to severe pain for many years (and will continue to have it for the rest of our lives) REQUIRE what you call "being doped up on narcotics." I understand that when you use these words, you have no idea how denigrating they are for us to hear. I'm sure that you do not intentionally mean to put us down. Some of us have had chronic severe pain for the majority of our lives. The only thing that keeps us from suicide is what you call, "being doped up." Can you put yourself into our world for a moment? Imagine being in severe pain that never ends"026 for weeks, months, years and decades. These drugs prevent tens of thousands of suicides every year. Just one of these medications added nine wonderful years to my very rewarding university career. So, go ahead. Call me, "doped up." I could care less. All I know is that after decades of use, the drugs work and addiction is not a factor.
Please count me as delighted to be "doped up on narcotics" for the past 30 years and (hopefully) for the next years of my life. And while I have been "doped up," I became a several-times published author with a literary agent, I completed a wonderful administrative career at a major US university and I am still able to do a few things with my precious family - thanks to being what you call, "doped up." Without these "narcotics" that "dope me up," I would have decided to stop living about 20 years ago. With them, I've been able to live a gratifying and worthwhile life, contributing to my family and my community in a way that I never imagined. Please also know that I am aware of dozens of similar people who have contributed similarly, but only because of being "doped up."
Please forgive me for my crass words. But from my experience, from years of constant research and from comments made to me by some of the best fellowship-trained spine surgeons in America, I sincerely hope that your daughter is able to "be doped up on narcotics" for many years to come. I say this because I know from experience, from volumes research and from extensive anecdotal data that such medications will allow your daughter to live a much more normal and rewarding life. When all other treatments fail, when your daughter cannot be "fixed" and when a person can only look forward to more months and years of severe pain, you should be delighted to know that powerful medications can and will allow your daughter to have a terrific life. How would you feel if you prevented her or dissuaded her from using these powerful pain medications and she later decided to end her life because of the unrelenting pain? I'm sorry to have to use these words, but it happens all the time. People misunderstand how benign these medications are, when used as directed. People misunderstand the differences between addiction, tolerance and withdrawal. People think that those who use powerful pain drugs are "weak."
Please do whatever you can to educate yourself about pain medications. When you do, you will see that the only stigma that still applies to those of us using these medications comes from people who consider opioids "bad" or "evil." They are not. In fact, they might just save your daughter from making a serious decision about her life that will cause you to have great pain for the rest of yours. I know these words can hurt. It's not my intention. My only concern is that your daughter be given the medications that will allow her to life a fairly normal, rewarding and worthwhile life. If she cannot be "fixed" with any other treatment, then these drugs are her lifeline. I've been there, done that and not just survived, but prospered. Good luck.
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csw2@bex.net
BTW, doctors allow some people who have skin reactions (contact dermatitis) with Fentanyl patches to change them daily. Fentanyl is the most effective pain medication available. It is far more efficacious than morphine. If Fentanyl helped you, then ask if you can change the patches daily. I've heard from dozens of people who use Fentanyl Transdermal and not a single one said that the patches were effective after 48 hours. So, changing them at 24 hours might give you the best result. Insurance can pay for this if your doctor writes that the patch causes irritation and must be replaced daily.. Just a thought.
P.S. There are many places on your body where the patch creates more irritation. You should never, ever put a patch on the same site as an old one, don't use the same site for several weeks. Also, you'll have less irritation when you place a patch on skin that is thick and tight. For example, if you put the patch on your back, it will cause less irritation than if you put it on an area of your body where the skin can pucker and fold. Guaranteed.
Also, you must use a steroid cream on the area under a patch every day after the patch was removed. The best result is to apply a steroid cream (even over-the-counter 1% helps) on all skin areas where a patch might be applied DAILY. If you do this, your skin irritation will become history and you'll benefit from the most powerful pain killer.View Thread
csw2@bex.net

csw2@bex.net
If you cannot obtain a referral for decompression, try crunches several times per day. Instead of a traditional sit-up, pull your legs tightly into your chest and hold that position for ten seconds. Repeat that ten times. It can stretch the lumbar vertebra apart long enough for the disc to move back.View Thread
csw2@bex.net

csw2@bex.net
Drug testing is far from foolproof. One could have used no medication and still flunk the test from something consumed, like poppy seeds. Some people taking opioids have inconsistent plasma and urine levels.
The only logical solution is to repeat the urine test. If you're taking the Oxycodone as directed, it should show up. If your physician won't agree to the repeat urine test, find another doctor.View Thread
csw2@bex.net

csw2@bex.net
The next similar option for that kind of pain is an intrathecal infusion pump. But its success rate isn't much different. While the major fault with the SCS is leads that are improperly placed, leads that move away after implantation, leads that fracture or are impinged by fibrosis... the IT pump's most frequent failure is from catheters that are improperly placed, that are blocked or crimped or that move away from the nerve root due to fibrosis impingement.
Meanwhile many of us can benefit from a cocktail of pain medication and off-label drugs. The side effects are manageable and surgery will never be involved. I understand that some people cannot tolerate or benefit from opioids; but I also wonder how many different combinations they have tried. There are about two dozen commonly-used opioids, plus another two dozen useful off-label drugs. If we are willing to try many different medication variations, we can eventually discover which combinations work best. This requires only a physician with an open mind and a patient willing to try many different medications.
This process added 9 wonderful years to my career and continues to help years later in retirement. I'm glad that I resisted having a surgically implanted machine for my pain. And I'm deeply thankful for a physician who allows me to try almost any reasonable medication combination. And I stress the word COMBINATION. None of the dozens of pain medications that I've tried have worked well on their own. But in different combinations, along with off-label drugs, they work very well. The secret is to try all of these opioids.
Surgically-implanted mechanisms with low success rates are for those of us who have tried the dozens of medication combinations and off-label drugs and who cannot tolerate or benefit from any of them. If it's a matter of dealing with a minimal side effect, such as constipation, I'll gladly take the side effect over a machine with a low success rate that requires surgery to implant, frequently fails, and requires more surgery to remove.View Thread
csw2@bex.net
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