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Spinal cord stimulator
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An_250979 posted:
HiI guys!! I received my permanent implant December 18th 2012.the first two months were amazing.i came off all my medicine and life was looking grand.the only problems I had were in the salon I would blow out my station and there would be no switches to flip . It was all me. I blew it out... It happened maybe 5 times.my assistant would run to the fuse box and I would say dont bother I felt that one and she would say your right.i listened to every rule took the time off even though I own my own business and had to hire a full time assistant because I had lost all sensation in my hands even to hot and cold.so I could no longer shampoo anyone.but I was off the oxy and I was getting happy until about 3 weeks ago my stim just shut off........ I have extensive net e damage from a car accident so my stim is up pretty high so when it went off I knew right away.i grabbed my magnet to turn it on and nothing,raced for my hand held and I could not get on my frequency that I was always on .i could go on the other programs that I never used before but they were not doing it for me.i called the tech that was with me during surgery and he saw me a few days later.FYI, after the stim turned off ,even after reprogramming I have been sick to my stomach 24/7.lost 8 lbs in 2 weeks.reprogramming was ok but I told him it wasn't right he told me to give it a week and try all the programs .i gave it a week until I called him and he had moved positions.the number he left of another tech never called back and the stimulation had moved to the front of my neck when I looked down I couldn't breath so I had to keep my head held high .i called the manufacturer in Texas and three days later I got a call from a tech and 4 days after that a reprogramming.its better but not the same.no stim in the back of my neck where I need it facet nerves are wide awake and they are pissed.i have stim in my shoulder and fingers but not down my arm.the tech seemed frazzled.she. Could not understand why I had such heavy stim in the front of my neck.she asked if I fell or was in a accident??? I told her if I fell or was in another accident my head would have popped off by now.i work and I go home and cry that's it.i told her about my chills sickness ,restlessness and she acted clueless i went for e rays last night ill keep you posted.im not sure where I stand on all this.my dr told me she has another patient who had a spinal stim put in 2 weeks before me and its been removed due to malfunction???
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Colormecrazy responded:
I also burned out the credit card machine this weekend while I was blowdrying I shocked myself really hard.as soon as it happened my station went off and the cc machine made a noise and went off.i called the number and they said a few minutes ago the terminal was hit by a hot wire.the dr said impossible.3 people were there and saw me drop to the floor.i think not
 
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ctbeth replied to Colormecrazy's response:
Hi,

I don't know about the second letter, but I have a St Jude's Genesis implant.

As you mentioned Texas, I'm going to guess that you have a St Jude's, also.

You've probably already been told that it really takes a full six months for all of the post-op inflammation to resolve and the stimulation changes a lot during the post-op period.

I've had mine since 2007. It took me about six months to really get accustomed to it.

Initially, it felt weird and foreign. I messed with the setting a lot and had many adjustments by the tech. By the six month point, the SCS started feeling very natural and as if it was now part of me.

Of course, you're going to have to continue to work with the rep/ tech (I think St Judes calls them representatives rather than technicians) and the surgeon.

I would urge you to postpone the decision to ex-plant for at-least six months. You can always turn it off if it's bothersome.

Can you post the model of your unit? There are differences with the different batteries. There was a recall on the Eon mini last year, but since you got your in Dec 2012, it would seem unlikely that you received a bad battery. The flaw was in a small weld inside the battery.

If you're systemically unwell, like chills, sickness ,restlessness that you stated, if the stimulation that is causing this, then upon turning it off, these symptoms should completely resolve.


Since you did so well initially, I do hope that you'll give it some more time. Just with what you do for work may have caused some alteration in the post-op inflammation (remember, most of the swelling is inside and you cannot see it) that could change the sensation.


Do you think that the reps are treating you right? Have you visited the neuro-surgeon since this has started to bother you?


Oh yes, you've had it xrayed, so this may tell the NS something.


Please keep us updated.


Good luck.
 
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cweinbl responded:

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.
cweinbl
csw2@bex.net
 
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ctbeth replied to cweinbl's response:
I have thouroughly examined csweinbl's posted document from, Pain Physician evaluations of pain management therapies for FBBS and CRPS.

Below is a brief synopsis of studies performed and documented by Kumar et al, in a 2009 publication.

If you'd like to read further, csweinbl has posted the link to the entire document.

Please read to the end as the conclusions are the last paragraph.

CMM - conventional medical management
SCS- spinal cord stimulation
FBBS- failed back surgery syndrome
CRPS- chronic regional pain syndrome

TEXT BELOW:

Kumar et al -
SCS with conventional medical management (CMM) in patients with neuropathic pain secondary to FBSS with predominant leg pain of neuropathic radicular origin.

By 12 months, the protocol analysis showed 48% of the
SCS group and 9% of the medical management group
achieving at least 50% pain relief.

By 24-month follow-up, 42 out of 52 randomized patients continuing SCS reported significantly improved leg pain relief,quality of life, and functional capacity; and 13 patients (31%) required a device-related surgical revision (1001).

At 24 months, of 46 out of 52 patients randomized to SCS and 41 of the 48 patients randomized to CMM who
were available, the primary outcome was achieved by
34 (47%) out of 72 patients who received SCS as final
treatment versus one (7%) of 15 for CMM.

The authors concluded that compared with the medical management group, the spinal cord group experienced improved leg and back pain relief, quality of living, and functional capacity, as well as greater patient satisfaction.
 
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ctbeth replied to ctbeth's response:
Since the results were published in 2009, and the studies followed SCS patients for 24 months, let us assume that the initial implants of patients was, at the latest, 2007. Does this seem a fair date?

Since 2007, most St Jude implants seldom use the per-cutaneous leads, but a flattened paddle lead, which provides better coverage, as it is curved around the spinal cord in the epidural space, which reduces the incidence of lead migration..

More recent evaluation does not indicate if the up-dated lead would indicate a statistical percentage.

The Kumar et al 2009 data does not separate surgical revision related to generator vs revision related to lead migration.

Additionaly, the raw findings for the 2009 publication does not include the SCS trial, which is the temporary placement of a single percutaneous lead attached to an external power supply, which is kept in place for three-to-seven days.

This enabled the patient to determine subjectively if the permanent implant is likely to give sufficient relief to warrant a permanent power supply and paddle lead surgical implantation.

This is a very personal decision. My life was so negatively impacted by pain that I would have been willing to do anything possible for any possible chance of relief.

At that desperate hour, a 60% chance of having greater-than 50% pain reduction seemed like very good odds.

After the temporary trial, I knew, before permanent implantation surgery, that the sensations were effective for me.

We all,"sit where we stand", as the saying goes.
Had I the positive effect to fentanyl that Mr W. did, along with repeated surgical failures, I am certain that I'd encourage the conventional medical management over the spinal cord stimulation.

As I had not benefited much from CMM, as the adverse effects were inconsistent with my quality of living, I looked to the 60% chance as a realistic opportunity for non-pharmacological pain management.

I would still encourage anyone remotely considering SCS, to have the temporary trial. If you like the pain management you feel with SCS, then make the decision with some idea of what the stim is capable; if you do not get any pain relief from the temporary trial, then chances are, that you'll fall into the 40% of persons who will not benefit.

Regarding the 12 month post SCS vs CMM,

*the SCS patients expressed/ exhibited a 48% success of achieving 50% pain relief

* the CMM patients expressed/ exhibited a 9% success of achieving 50% pain relief.

The statistical don't lie, but interpretation an be manipulated.
 
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cweinbl replied to ctbeth's response:
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.
cweinbl
csw2@bex.net
 
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An_251113 replied to cweinbl's response:
I had a stem put in a year 1 1/2 ago. Mine was for lower back pain and left side leg pain. I've been dealing with this for going on 11 yrs. Tried everything before doing this have had three failed back surgeries. Was happy with outcome at first because really helped leg pain. But now I'm having horrific upper back pain ( both sides ). I know when this happened. I called my drs. Office and asked if something could of happened with my stem to cause this pain? Leads move? Anything? They told me it was not possible. I also did the stem as a last resort to get off all or some of pain meds and that never happened. Has anyone else experienced anything like this? Now it looks like I'll be getting it out!
 
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Anon_57995 replied to An_251113's response:
Hi,

If the pain is from the stimiulator leads, try turning the unit off. It the pain stays the same, it is probably not related to the unit.

Will you see the MD soon? He/ she can x-rray and see if the leads are in place.


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