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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: Oxycodone Withdrawal Question

First of all, congratulations on being pain free, or at least nearly pain free. After all,...

cweinbl
csw2@bex.net

Posted by cweinbl

11 Replies | Reply | Watch This DiscussionReport This| Share this:Oxycodone Withdrawal Question First of all, congratulations on being pain free, or at least nearly pain free. After all,...

Reply: Chronic Pain,I'm so tired,can anything really help...

Annette is correct. Opioids are not useful for headaches. However, it sounds as though your...

cweinbl
csw2@bex.net

Posted by cweinbl

7 Replies | Reply | Watch This DiscussionReport This| Share this:Chronic Pain,I'm so tired,can anything really help anymore?? Annette is correct. Opioids are not useful for headaches. However, it sounds as though your...

Reply: Strong non-narcotic pain killers?

Anyone with moderate to severe pain will suffer unbearably with non-opioid ("narcotic" is...

cweinbl
csw2@bex.net

Posted by cweinbl

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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cweinbl
csw2@bex.net

Posted bycweinbl

(FromChronic Pain Management: Member Discussion)

160 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Anyone with moderate to severe pain will suffer unbearably with non-opioid ("narcotic" is...

Reply: Switching long acting pain medicine due to rising ...

Just call your doctor's office and tell the truth. You don't need an appointment. You...

cweinbl
csw2@bex.net

Posted by cweinbl

11 Replies | Reply | Watch This DiscussionReport This| Share this:Switching long acting pain medicine due to rising co-pay Just call your doctor's office and tell the truth. You don't need an appointment. You...

Reply: Bulging Disc

Spinal decompression is a consideration. It's a machine that stretches your vertebra apart,...

cweinbl
csw2@bex.net

Posted by cweinbl

4 Replies | Reply | Watch This DiscussionReport This| Share this:Bulging Disc Spinal decompression is a consideration. It's a machine that stretches your vertebra apart,...

Reply: getting off of oxycodone for chronic pain

How would going off the Oxycodone prove that you are in pain? There's no guarantee that...

cweinbl
csw2@bex.net

Posted by cweinbl

7 Replies | Reply | Watch This DiscussionReport This| Share this:getting off of oxycodone for chronic pain How would going off the Oxycodone prove that you are in pain? There's no guarantee that...

Reply: Spinal cord stimulator

With all major large-group studies, involving hundreds or thousands of participants, the...

cweinbl
csw2@bex.net

Posted by cweinbl

With all major large-group studies, involving hundreds or thousands of participants, the SCS has a long-term success rate (12 months) of about 60% http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf . The research that you hang your hat upon has a total control group population of 52 patients. I'm sorry, but that size control group is statistically meaningless. It's way too small to have any wide-ranging validity or probability virtue. Plus, the SCS appears more amenable for referent pain, while the most common spinal pain is nociceptive. I have both types of severe pain; but in my case, as with countless others, it's the nociceptive pain that is most disabling. I can tolerate the occasional leg pain. It's the nociceptive severe pain that I get from sitting and standing (weight bearing) that is completely disabling. Most of the people I've known with disabling spinal pain have a preponderance of nociceptive pain. It seems far more disabling than the transitory neuropathic pain. The SCS is not a treatment of choice for that pain.

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

cweinbl
csw2@bex.net

Posted bycweinbl

8 Replies | Reply | Watch This DiscussionReport This| Share this:Spinal cord stimulator With all major large-group studies, involving hundreds or thousands of participants, the...

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

The SCS has a long-term success rate (12 months) of about 60% ...

cweinbl
csw2@bex.net

Posted by cweinbl

The SCS has a long-term success rate (12 months) of about 60% http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf .Considering that surgery is required to implant and to remove, is this risk worth taking? As the surgeon said, implantation and removal has many significant dangers, not the least of which is dural tear or permanent spinal nerve root damage. Would you have brain surgery with a 60% chance of success? Would you even have an appendectomy with that low a success rate? Are there many types of surgery with a lower success rate?

The next similar option 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 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

cweinbl
csw2@bex.net

Posted bycweinbl

31 Replies | Reply | Watch This DiscussionReport This| Share this:St.Jude spinal cord stimulator failure after 2 months The SCS has a long-term success rate (12 months) of about 60% ...

Reply: Do I need a new Doctor?

There are dozens of powerful pain medications, long and short-acting. It can take years of...

cweinbl
csw2@bex.net

Posted by cweinbl

17 Replies | Reply | Watch This DiscussionReport This| Share this:Do I need a new Doctor? There are dozens of powerful pain medications, long and short-acting. It can take years of...

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...

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