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cweinbl

Joined: 02/05/2010

My Story:

Born with congenital central canal stenosis. Disc herniations began at age 17. Three disc herniations and four failed surgeries forced me into retirement at age 51. Osteophytes, osteoarthritis, advanced fibrosis, collapsed vertebra, bone damage, multiple areas of radiculopathy, nerve root impingement and nerve necrosis. Participated in two comprehensive pain management programs. Conduct research into alternative treatments, including molecular pharmacology and interventional techniques in the management of chronic spinal pain.

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Reply: I'm tired of my pain n cant take it any moor!!

What makes you think that some doctor can just eliminate your disease and pain? Sorry, but...

cweinbl
csw2@bex.net

Posted by cweinbl

28 Replies | Reply | Watch This DiscussionReport This| Share this:I'm tired of my pain n cant take it any moor!! What makes you think that some doctor can just eliminate your disease and pain? Sorry, but...

Reply: Still in Pain 6 weeks after back surgery.

1. The success rate for spine surgery is about 60% (less if you've had prior surgery). I...

cweinbl
csw2@bex.net

Posted by cweinbl

4 Replies | Reply | Watch This DiscussionReport This| Share this:Still in Pain 6 weeks after back surgery. 1. The success rate for spine surgery is about 60% (less if you've had prior surgery). I...

Reply: I'm tired of my pain n cant take it any moor!!

Just one simple medication reduced my pain by at least 80%, adding more than 9 years to my...

cweinbl
csw2@bex.net

Posted by cweinbl

Just one simple medication reduced my pain by at least 80%, adding more than 9 years to my university career. No one needs to be in constant pain today. Any physician can prescribe powerful opioids that will reduce or eliminate your pain. For example, Fentanyl is at least 80 times more powerful than morphine.

Opioids are a natural substance in your body. They bind with opiate receptors in your brain. You can use these medications for a lifetime without having any damage to your body.

What does "drugy" mean? If it means that your brain is fuzzy, but your pain is decreased, then by all means I'm happy to be fuzzy! If you think that using powerful pain medication in some way makes you an "addict." then you are dead wrong! Millions of us with chronic severe pain use powerful opioids and never become addicted. In fact the latest research shows that the addiction risk is about 1% to 2%. Don't believe me? Here's the research: 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 . If you have not had a prior addiction disorder in your life, then you won't become addicted now.

Most of us with severe pain cannot be "fixed." But we can enjoy a decent quality of life for decades with powerful opioids. That's what has happened for me and for many thousands of others. If you fear using opioids because of the social stigma, then you are only punishing yourself. There is no truth to that.

The world today offers those us with chronic severe pain an out. We can use powerful opioid medications and continue to enjoy life. These drugs do not make us a "druggy" or any other inferior life form that you can imagine. They offer us life without severe pain, or at least life that allows us to continue to work and be a productive member or family and society.

Use it (medications) or lose it. Accept a good life with powerful medications, or suffer and die a worthless, unsatisfying death. Using opioid medications does not make you an addict. In fact, if you haven't already had a problem with addiction disorder, your chance of being addicted to pain medication is less than 2%. It has taken me from an unemployed university administrator to a successful novelist, with an agent and major publishers. With decades of opioids, I remain a productive member of society. Even with my severe disability I can be a many-times published author.

Without these powerful medications ("to avoid being a druggy"), I would be a useless heap of muscle and bone, of no value to anyone. Think about it. Powerful opioid medications exist to ennoble us, to give us a second chance. They provide an avenue from a depressing morass of self-pitying humanity, into a productive and recognized member of society. Pain drugs do not push us down into a life of addiction. They raise us to a new level of satisfying life. They don't make us a "druggy." They enable us to reach ever-higher levels of reward, satisfaction and incentive.
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cweinbl
csw2@bex.net

Posted bycweinbl

28 Replies | Reply | Watch This DiscussionReport This| Share this:I'm tired of my pain n cant take it any moor!! Just one simple medication reduced my pain by at least 80%, adding more than 9 years to my...

Reply: Spinal cord stimulator

I'm so sorry to hear about your problems. However, before anyone has a mechanical device...

cweinbl
csw2@bex.net

Posted by cweinbl

I'm so sorry to hear about your problems. However, before anyone has a mechanical device implanted, she or he should do some serious research. I did. And here is the latest, most comprehensive research for all forms of spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .

Under the best of circumstances, when you've had no prior spine surgery, and you have a SCS or an IP pump implanted, the best you can hope for is a 60% success rate. Read it for yourself. Would you have cancer surgery or heart surgery with a 60% success rate? Spine surgery, including implantation of the SCS and IT pump has deplorable success rates. The leads from the SCS are either poorly placed or later move away from the desired nerve root. The catheter from the IT pump either becomes crimped blocked or is placed too far from the desired nerve root.

Never trust your surgeon's success rate. Do your own research. The majority of people who have an IT pump or a SCS implanted have more surgery to remove the devices later, because they fail to perform as expected. Don't take my word for it. Conduct your own research. It's all there for you on the Internet. Otherwise, you too will become a victim. Believe me, you'll be the only victim. The surgeon gets paid for implanting and removing the failed device. The company that manufactured the device gets paid when you buy it. The paid physician/anesthesiologist gets paid. And you get stuck with chronic severe pain that will ruin your life - for the rest of your life.

I was able to continue working for 9 more years after I thought that the pain was my end. But just one medication gave me 9 added years to an awesome university career. That same medication continues to help me in retirement.

Just one non-medication, non-injection, non-invasive treatment blasted away 20% of my pain. It is called BIOFEEDBACK. Just by using my mind in a new way, I am able to deflect 30% of my chronic severe pain.

You don't need to resort to surgery with a low-percentage outcome. There are useful alternatives. Research them. Use them wisely. You don't need to succumb to having an expensive mechanical device implanted, which has at nest a 60% success rate. That should be a last resort option. Good luck.
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cweinbl
csw2@bex.net

Posted bycweinbl

8 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal cord stimulator I'm so sorry to hear about your problems. However, before anyone has a mechanical device...

Reply: St.Jude spinal cord stimulator failure after 2 mon...

Research reveals a SCS long-term success rate of about 60% (...

cweinbl
csw2@bex.net

Posted by cweinbl

Research reveals a SCS long-term success rate of about 60% (http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf ). It really pays to do the research before you have something surgically implanted. It also pays to take your surgeon's opinion about the success rate with a big piece of reticence. After all, these guys make a huge amount of money by implanting machines in your body and when the machines fail, it's YOUR problem.

The same applies to the intrathecal infusion pump (IT Pump). The long-term success rate is about 50-60% (lower if you've had prior spine surgery, especially fusion and most-especially if you've had multilevel fusion).

The overall success rate of implanting mechanical devices on your spine is lower than than the success rate for almost every other type of surgery, including cancer surgery. I've had four failed spine surgeries, I remain in constant severe pain and I would not have one of these devices surgically implanted if my life depended upon it. All who do remain lab rats to a culture of failure.

With the SCS, the most common problem is leads that are improperly placed, or properly placed leads that later move away from that sweet spot next to your spinal nerve root.

With the IT pump, the most common reason for failure is a catheter that is improperly placed or a catheter that becomes crimped, blocked or a pump that fails. Another common problem is pump medication that works well with the trial unit, but fails after a few months in the implanted pump. Keep in mind that the placebo effect will make many trial units appear wonderful. Yet, after several weeks with the implanted pump, it mysteriously fails. Always beware of the placebo effect. It has happened to me many times. We think that something new will help, so it seems to - until ... a few weeks later... it fails.

The IT Pump and the SCS are ONLY for those chronic severe pain patients who cannot benefit from oral, IV, Transdermal and Intrathecal medications. You should not consider these options unless you have intolerable side effects from every combination of every type of medication.

A comprehensive pain management program will offer every type of treatment, including: spinal decompression, a corset, brace, TENS, traction, acupuncture, biofeedback, physical therapy, kinesiotherapy, injection of steroids and anesthetics, non-steroidal anti-inflammatories, cortisone, 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. If you go for surgical implantation of a mechanical device and you have not yet tried all of these treatments, you are cheating yourself. I can drop my pain by 15-20% with biofeedback alone. Please don't jump into the "latest-greatest treatment," especially if it involves surgery or injections. And above all, please do your own research before agreeing to any treatment. There are far too many physicians earning millions of dollars for products and treatments that fail. I was once far too trusting. I will never again be so easily persuaded.
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cweinbl
csw2@bex.net

Posted bycweinbl

31 Replies | Reply | Watch This DiscussionReport This| Share this:St.Jude spinal cord stimulator failure after 2 months Research reveals a SCS long-term success rate of about 60% (...

Reply: Morphine pump questions

I used a morphine pump twice after major spine surgery. Both times it was a complete...

cweinbl
csw2@bex.net

Posted by cweinbl

I used a morphine pump twice after major spine surgery. Both times it was a complete failure. Later, I tried the Fentanyl Transdermal system and achieved an 80% reduction in chronic pain.

We're all different. That which helps one of us may do nothing for another one. That's why it's so important to try each and every long and short-acting pain drug before deciding upon a course of action. More often than not, for chronic pain, the answer lies in a combination of a long-acting pain medication (Kadian, Oxy-Contin, Fentanyl Transdermal, etc.) PLUS a short-acting drug (Hydrocodone, Oxycodone, etc.) for breakthrough pain. Often times, BOTH must be used together to accomplish the desired result.

To add efficacy, anyone with chronic pain should consider an anti-depressant (Cymbalta, etc.) because anti-depressants will inhibit the reuptake of Seratonin, one of the body's natural pain-fighting chemicals.

If the patient has referent pain, add an anti-convulsant, such as Lyrica or Neurontin.

If the patient has osteoarthritis or some other auto-immune/inflammatory condition, add an anti-inflammatory (Celebrex, etc.).

After 40 years of experimentation with my trusted family physician, we have isolated the best of each of the above-mentioned medications for my unique body chemistry. Remove any of these medications and my pain comes crashing back. But used together, like a fine symphony orchestra, my pain is kept at bay and my pain is tolerable. My point here is to say that chronic severe pain often requires the concurrent administration of long and short-acting opioids, plus anti-depressants, plus anti-inflammatories, etc. It is this "cocktail" of drugs that allows us to survive and thrive. Yet, so many physicians today are reluctant to prescribe combinations of medications. I can tell you that these combinations are the only way that many of us continue to survive.

The secret to this success is to have a physician willing to allow you to try dozens of different medications, in combination, until the BEST combination is realized. This can take many months or even years to accomplish. But, when it comes to your health, it's worth it.

If all of this fails, then it might be appropriate to seek the intrathecal infusion pump or the spinal cord stimulator. But beware that the long-term success rates for both mechanisms are in the range of 60% (see http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf ). And remember that surgery is required to implant and to remove these barely-successful mechanisms. And all surgery entails morbidity. Having a machine implanted in your body with a 60% success rate seems like a very last-resort option to me. On the other hand, those who cannot benefit from oral and Transdermal pain medications might see no other alternative.
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cweinbl
csw2@bex.net

Posted bycweinbl

7 Replies | Reply | Watch This DiscussionReport This| Share this:Morphine pump questions I used a morphine pump twice after major spine surgery. Both times it was a complete...

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Reply: Prolong pain after ruptured disc surgery

Because spine surgery has such a deplorable success rate (about 60%), the goal is not for...

cweinbl
csw2@bex.net

Posted by cweinbl

7 Replies | Reply | Watch This DiscussionReport This| Share this:Prolong pain after ruptured disc surgery Because spine surgery has such a deplorable success rate (about 60%), the goal is not for...

Reply: Discogram

Not sure why I'm replying to a 4 year-old post. But, a discogram should never be used until...

cweinbl
csw2@bex.net

Posted by cweinbl

74 Replies | Reply | Watch This DiscussionReport This| Share this:Discogram Not sure why I'm replying to a 4 year-old post. But, a discogram should never be used until...

Reply: chronic pain and addiction?

The rate of addiction among chronic pain patients is between 1% and 3% (see ...

cweinbl
csw2@bex.net

Posted by cweinbl

The rate of addiction among chronic pain patients is between 1% and 3% (see 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 . Thus, if you have not had a prior addiction disorder, you have no reason to fear it. I suggest that you took too much medication not because you were an addiction risk, but because your pain medications were not properly managed. Many of us here have used opioids for decades without any problems beyond constipation.

We often benefit more from using several types of medications concurrently. That includes using a long-acting opioid as the mainstay plus a short-acting opioid for breakthrough pain, which might have reduced your need to use too much of the long-acting drug. Add to this an anti-depressant. Anti-depressants inhibit the reuptake of Seratonin, a powerful painkiller produced by our body. Add an anti-inflammatory and, if you have referent pain, add an anti-convulsant. It was not until I was using all of these at the same time that my pain was better managed.

Mind-body techniques can also help, including but not limited to: biofeedback, systematic relaxation, meditation and Yoga. If all else fails and you refuse to have fusion, you can try the spinal cord stimulator or the intrathecal infusion pump. BTW, I've had four spine surgeries, including multi-level fusion. They all failed. The success rate is deplorable. I now not only have all of prior damage, but the damage done during surgery, when a resident accidentally gouged out a piece of my right S1 nerve root, I also have a ton of fibrosis, which basically defies treatment and impinges nerve roots.

For a good picture of the efficacy of all major spinal interventions, see this comprehensive research: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .

Good luck.

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cweinbl
csw2@bex.net

Posted bycweinbl

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Reply: I get so tired of dealing with the stigma and misc...

I'm very sorry to hear about your pain and disability. After 40 years of chronic pain that...

cweinbl
csw2@bex.net

Posted by cweinbl

I'm very sorry to hear about your pain and disability. After 40 years of chronic pain that has become increasingly severe, I've learned to stop caring what people think. Yes, we've lost some friends over the years because I'm unable to go out and sit for more than a few minutes at a time. But our real friends are still here. If the other people fail me in friendship because they haven't taken the time to understand my disability and pain, then screw them. I no longer need or want them. I've had three massive disc herniations and four failed spine surgeries, including multilevel fusion. I had to retire from a wonderful university career at age 51, in 2004. I have very significant nerve damage from L3 to S1, especially right S1. A surgical resident accidentally gouged out a large piece of that nerve root. It's fun & games, eh?

I've had mixed results with PM. The best I can say is that biofeedback helps slightly. Nothing else helped and some interventions made the pain much worse. As "eriked1220" posted, PM mistakes such as misplacing a SCS or IT pump (implanting it in the wrong location) can make your pain much worse. BTW, I'd be speaking with a good attorney over that mistake. Many PM physicians only perform repeated injections, because it's the fastest way to make a ton of money with very little risk. Even the patient success stories admit that the SCS or IT pump only lowers the amount of opioid pain medication - not eliminates it. Furthermore, well-placed SCS leads can and do eventually move away from the critical nerve root; or they generate fibrosis which impinges the nerve. IT pump catheters that are well-placed move away, generate fibrosis or become crimped. And, sadly, we all become tolerant to our best pain medications over the years. There are few very good answers.

The best success stories that I've heard from people like us occur when several medications are used concurrently. That would be a long-acting opioid (Kadian, Oxycontin, Fentanyl Transdermal, etc.) PLUS a short-acting opioid (Hydrocodone, Oxycodone, Tramadol, etc.) for breakthrough pain, PLUS an anti-depressant (Paxil, Zoloft, Cymbalta, etc.) to inhibit the reuptake of Seratonin PLUS an anti-convulsant (Lyrica, Neurontin, etc.) for referent pain. Remove any of these and the pain level skyrockets. Some of us need to add a sleep agent, such as Ambien. Yes, these are powerful and additive medications. But over a period of months and years, the side effects dissipate and we become tolerant to the cognitive ambiguity. When one cannot benefit from this "cocktail," it could be worth trying the SCS or IT Pump. But the success rates for those two devices range from 40% (if you've had prior spine surgery) to 60% (no prior surgery). So, how willing am I to go back for more surgery after four failed operations, just to implant a device that has a one in two chance of failure? Plus more surgery is required to remove it. Patients have contracted and perished from MRSA infections secondary to those operations. Thanks, but I'll wait until the success rate is over 60%.

I was lucky in that after PM failed twice, my internist was willing to allow me to try dozens of different combinations of drugs. It can take months or even years to determine which drugs are best with your unique body chemistry.

Speaking of drugs, millions of people with chronic pain benefit greatly from THC. The legal way to do it, if you do not live in a medical marijuana state, is to ask for an Rx for Marinol (Elan Pharmaceuticals). The active ingredient is THC. If it helps, terrific. If not, at least you tried.

Finally, distraction is a very powerful tool for PM. Do whatever holds your mind captive. With me it's writing, reading, films and sports. I've produced four books since I retired; three have been published and I have a literary agent. I never imagined that I could do this; but I tried. Be willing to try anything new that holds your interest. Like biofeedback, other forms of mind-body therapy can be effective, such as meditation, systematic relaxation and Yoga. It won't help as well as powerful medications. But it will add to the efficacy of your medications.
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cweinbl
csw2@bex.net

Posted bycweinbl

65 Replies | Reply | Watch This DiscussionReport This| Share this:I get so tired of dealing with the stigma and misconception about chronic pain I'm very sorry to hear about your pain and disability. After 40 years of chronic pain that...

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