See All
Preferences
My Communities
My Discussions
My Email Digests
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.
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.
csw2@bex.net
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.
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.
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.
csw2@bex.net
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.
See Related Pain Management Communities
Women's Health Newsletter
Find out what women really need.
Featuring Experts
Helpful Tips
Related News
Report Problems to the
Food and Drug Administration
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.
Other Pain Management Information
More Related Communities
The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.
Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
Health Solutions From Our Sponsors
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.


