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Hello to all:


Does anyone know where I can find any concrete data on the success and failures of the Pain Management treatment called SCS (Spinal Cord Stimulation). This is where electrical leads are attached to an area of the spine, and the electrical stimulation basically acts as a push back for many types of pain, including pain that has spread to most or all of the body which has no cure, Period. (Which is my case)


I am interested in a few things. One, which are considered the best SCS systems out there, and that is anywhere on our planet and all counties.


The other is the success and failure rate of the surgery to install the all SCS systems available, and the percentages of those SCS systems as to how long they lasted, what were the major problems encountered by the patient, and the percentages of success stories versus failure rates overall.


I have been drilling down via the many search engines, but there are very few qualified statistics available, since most of the failures are not discussed or even logged by surgeons, companies who make the SCS systems, or hospitals, and or clinics who monitor the positive and negative outcomes, or the long term successes, and the length of time of the long term SCS successes, or any notable failures.


I'm not sure if many of you know this, but the US still leads , or led in the operating on and/or severing the wrong limb on a patient, even if the good limb is prominently and clearly marked as the good limb, 'do not operate' written all over the good part of the patient's limb that does not need any kind of surgery.


The other is, even if an operation is botched, if the patient wakes up, and is alive after the surgery, and even if they now need additional assistance to stay alive, as far as the surgeon and hospital are concerned, the operation or procedure done is categorized as successful, unless the patient dies during, or very shortly after the surgery. So the data out there is is somewhat skewed, and no company or physician wants to have their product or surgical failures available to the general public.


ANY kind of data , comments or real life stories concerning SCS are welcome, and no piece of data or information is too small or too insignificant as far as I am concerned. I'll value each and every single piece of data or information I can find, since I am seriously considering this for my severe 24/7 pain management, which to date, can only be pushed back by high levels of Doctor prescribed opiates.


This is something I am really considering within the next 6 months or so, but I am kind of a get the information early on, so I can really take a good look.


I Thank all of you in advance, even if you only read what I had written here, and cannot contribute, since taking your time to read about my issues already deserves a great big electronic 'Hug', and a sincere 'Thank you very much for your valuable time'.


Regards....taz0921 ( aka Stan Z. )


PS. I chose the Topic to be medications, since SCS is considered a kind of Pain Management Solution, in a kind of similar category as medications prescribed for pain by physicians.


I also welcome any new or old options for very severe pain management for conditions that do not have a cure, and are not SCS or Opiate based.

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Stan, the things I said in my previous post aren’t all that helpful for nerve pain, which is just dreadful. You have my total sympathy. Nerve pain was a problem for me some time ago on the convex side in the progression of my curvaceous spine, when three of the vertebrae pinched nerves. The Pain Clinic I went to at the local major hospital put me onto a psychiatric drug whose name I’ve forgotten – this was over 20 years ago. I took it at a small fraction of the psychiatric dose, and they said that it scrambled the nerve pain transceptors up the spine. It did work, although it was difficult to come onto it (I fainted a couple of times), and just as bad to come off 3 years later. Disclosing it also stopped me getting income protection insurance. It just might be worth asking about if you really want to avoid surgery. Just by the way, do you have pain on every second breath, not every breath? I’ve never understood that bit, and never met a doctor who was interested. Thank you so much for your kind words to me, and I send you my very best wishes as a fellow traveler on a very bumpy road, yours Margaret.
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MargaretMcKen Sep 2019
It was called prothiadin, not sure of the spelling
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I would try acupuncture and acupressure therapy to see if that can help relieve the pain. I think doctors are using us as guinea pigs and I think that we should try every thing available before we let them cut on us. A good acupuncturist can do miracles in one visit.

Do you take any supplements that help with soft tissue, like glucosamine and chondroitin or MSM? Something to help cushion.

That medical errors are the 3rd leading cause of death in the USA says it all.

I hope you find alternatives to surgery.
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taz0921 Sep 2019
Thanks for your reply. I did not want to list all the stuff I have tried, because I would have run out of room on the form, but I get about 200 to 300 emails on Pain, Chronic Pain, Spinal Surgery, New Techniques...Yadda...yadda...yadda, every day from all over the world with google email searching for me and sending me emails, and some are redundant so I am really well informed, but it was my 1 of 2 or my pain management MD's I have who suggested that I look into SCS, so I am, and I have gotten a lot of great ideas and tips from this very intelligent group of humans.
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Taz,  I would look for medical studies with a significant number of participants.    They're often hard to wade through, and you may have to do some online research just to understand the terminology.

I've found NIH and EHP (Environmental Health Perspectives) to have excellent, if not complicated, information and summaries.  EHP doesn't really apply here; I use it only as an example of scientific studies. 

1.    These are Google hits for medical studies of SCS:

https://www.google.com/search?source=hp&ei=f5SKXYWCNKPt5gL0lIOoBA&q=Spinal+Cord+Stimulation+medical+studies&oq=Spinal+Cord+Stimulation+medical+studies&gs_l=psy-ab.3..33i22i29i30l2.1120.41343..41468...18.0..1.302.4033.21j14j1j1......0....1j2..gws-wiz.....0..0i131j0j0i22i10i30j0i22i30..10001%3A0%2C154.AsTTa-Zs0IU&ved=0ahUKEwjFva-DverkAhWjtlkKHXTKAEUQ4dUDCAs&uact=5#spf=1569363114042

2.   And this one's specifically from the NIH study, although it's a VERY small study:

https://www.ncbi.nlm.nih.gov/pubmed/29889356

3.    Better one:  24 month study:

https://academic.oup.com/neurosurgery/article-abstract/63/4/762/2558366

4.  Another list of many Google hits, most of which seem to be clinical in scope:

https://www.google.com/search?source=hp&ei=tpeKXbKBAszC-gTGtrSwBQ&q=SCS+clinical+studies&oq=SCS+clinical+studies&gs_l=psy-ab.3..33i299l2.4015.9902..10126...3.0..0.187.2272.18j6......0....1..gws-wiz.....0..0j0i131j0i10j0i22i30j38j33i160..10001%3A0%2C154.SXsHYxSOXG4&ved=0ahUKEwiytLWLwOrkAhVMoZ4KHUYbDVYQ4dUDCAs&uact=5#spf=1569363904823

6.   More hits, including diagrams and flow charts on "Effects of Spinal Cord Stimulation":

https://www.google.com/search?q=https://academic.oup.com/neurosurgery/article-abstract/63/4/762/2558366&tbm=isch&source=univ&sa=X&ved=2ahUKEwi-h-_IwOrkAhUQVN8KHQiECREQsAR6BAgAEAE&biw=1097&bih=461#spf=1569364074698

This might be something you want to check to narrow down your research, if you can see the charts and graphs.  (I can't, but I have cataracts; someone may be able to see them easier.)

CAVEAT:  After posting the URLs, I double checked them, and had some problems getting to the sites, one of which clearly changed in content.   So, if you have problems too, it's probably the browser.

7.  The VA has from what I've read stepped its treatment of multiple injuries as Vets return from the Middle East.    Ignore the first two hits, but check out those following.

https://www.google.com/search?ei=cJuKXc2MA4zmsAWrz7TwBQ&q=VA+Spinal+Cord+Stimulator&oq=VA+Spinal+Cord+Stimulator&gs_l=psy-ab.3..0i22i30l3.28726.30019..30321...0.2..0.126.410.2j2......0....1..gws-wiz.......0i71j0i8i13i30.L70YCZti5Bk&ved=0ahUKEwjNhKrSw-rkAhUMM6wKHasnDV4Q4dUDCAo&uact=5#spf=1569364879452

8.   Finding info through these links is not as easy, nor is the info as clinical.   But I did find a forum for Vets who've had spinal issues:

https://vetsbenefits.net/permanent-spinal-cord-stimulator-t133455.html.

A lot of the hits are literally "hit and miss", so you'll have to weed out a lot,

9.  Here's a brief synopsis of the procedure:

https://www.veteranshealthlibrary.org/TestsTreatments/ChronicPain/142,83763_VA

Hope these help.
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taz0921 Sep 2019
Wow, you went CRAZY NUTSO helping me with enough links and things to look for which will keep me busy way past the day I kick the bucket.
All I wanted and was hoping for was a few new ideas, but you went absolutely way outside the box, and I really really appreciate your time and effort helping me out.

Again, Thank You very very much!!!! (Stan Z.) aka taz0921
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I only have one anecdotal story and it isn't a good one. My story takes place some 20 years ago and I suspect things have come a long long long way in all this. But similar story about the pain. Somehow, something with leads went awry and caused of ALL THINGS IN THE WORLD bladder issues. Mostly from the leads as I understand it as the unit is not after that functional/operating.
As I said, I suspect things have come a long long way.
I am wondering if there is a forum out there. You might google just to see. I pretty much see forums on everything, and boy, those folks who deal daily with this stuff are the real experts.
I forgot the story around my friends issues exactly, but if you wish me to I will write her a note and ask for a few details to refresh my memory. She still deals with a lot of pain and tries more than one thing to deal with it. Private Message me if you want me to check in on the subject with my friend.
You are wise to check this out. As with pacemakers, Doctors and institutions use usually only the one kind by the one maker. Their preferred provider. As is also usual the anecdotal with almost everything from breast implants to ablation for atrial fib IGNORE the unsuccessful, and don't tell the complications enough. I am glad you are going to check everything out as well as you possibly can.
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taz0921 Sep 2019
Yep, I would appreciate if you can get that additional info for me, you never know what works, and I have heard of a few doctors who will step way outside their box of comfort, and in one case a doctor told their patient to try this special formula for dogs that does cure some of the cancers that dogs get.

Well, the patient was at his wits end, looking to get his finals in order, since everything he tried from many other doctors did not work, but the dog formula cured his cancer in about 5 months.

Now that is really a great and true story.....and something that most people or physicians would never ever even give it a thought, but the patient is alive and living happily with no cancer every time he gets tested.
So, you never know, and I am sort of at my wits end with the severity of pain I have to deal with 24/7 which never lets up, so that's why I asked real people here in this forum, and I am getting some great ideas and things to research out, and drill down.
Anyway, thank a bunch for your help, and I really appreciate your time.
Stan Z. (aka taz0921)
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I’ve used a TENS unit, which also works by disrupting the body’s own electrical pain impulses, but isn’t implanted. You get two electrode pads that attach to the skin with a lightly sticky jell, a foot or so apart, and you can choose different pulse programs, high or low strength, intermittent or continuous. It’s battery operated. Here they cost about $100 retail, and of course there is no surgery cost (or surgery risks). The only problem I’ve had was when the demo lady for a new model put it on too high a strength for me and it gave my back muscles too big a jolt. Otherwise it helped quite a lot, particularly in the night when my troubles are worst. My original unit was burned in a fire and I haven’t replaced it (I was looking for one when I had the demo that was a bit of a disaster), but you are reminding me to give it another go. I'm 72, and having been coping with this since I was 12, so I've tried every gadget in the book!

My other pain methods include sleeping on the floor, sleeping without a pillow, and sleeping on a hot water bottle. I have a brace that is just comfortable enough to wear all night, and a rocker pillow to help me wriggle my hips from side to side in bed. I am very careful with drugs to avoid addiction, but I use a sleeping tablet at around midnight if it’s a bad night. I have very obvious scoliosis, so I have no trouble convincing my doctor about either the problem or my own self-management-control. I have unlimited scripts for 30 mg codeine/ 500mg paracetamol (I can’t tolerate nurofen). I sometimes take a codeine tablet in the daytime, but usually only at night. I rarely take more 3 in 24 hours, which is well under the toxic level, and I have no trouble stopping as soon as my pain episode drops down (it usually lasts a couple of weeks at least). I have been offered stronger pain killers (endone, oxycodone, oxycontin, fentanyl) but I won’t take them because of the addiction risks. Codeine is the least addictive opioide, and doesn't give you a druggie 'high'. The statistics for codeine related deaths are almost always overdoses of the additive (paracetamol/tylenol or nurofen), which are more toxic than the codeine. For lower pain levels in the daytime, I take turmeric/blackpepper/ginger, in proportions 7:2:1, a teaspoonful at a time in yoghurt (curry quantities are not therapeutic).

Alcohol gives me a couple of pain-free hours in the evening, and a good book helps to take my mind off my trials.

You have my sympathy, and best wishes. If you want more details of anything I’ve mentioned, send me a message. Yours, Margaret
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taz0921 Sep 2019
Margaret. I want to thank you for all the tips and ideas you gave me, and the time you took to message me about them. You are a great person. PERIOD.
Stan Z. (aka taz0921
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You may want to try searching on UpToDate. It's an evidence-based resource used by physicians, but anyone can subscribe and a week-long subscription is probably not that expensive. They provide citations so it should provide a good jumping off point for finding the literature that's out there.
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taz0921 Sep 2019
I have never heard of the site that you suggested, and I have found and bookmarked it, so I can really take a look at what it has to offer.
You are correct. Their price for joining for one week is really reasonable, and worth the $$try to see what I find out.
Thank you again for letting me know about something that I have never heard of, and could be very valuable.
Stan . (aka taz0921)
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Hi Stan,

My Mother had her first SCS implanted in 2011 at 80 yrs of age. Before they implant one in you, they will give a temporary implant to see if it will work on you. SCS only work on nerve pain - not arthritis pain or muscle pain or any type of mechanical pain. Nerve pain only.

The one Mom had implanted in 2011 required her to charge it about 2x/week thru an external charging system that she attached with a belt. She also had a remote control that she used to regulate the programs and the level of stimulation that she got. As she aged, it became increasingly more difficult for her to use the remote and the charger, and finally, about 2 years ago, the internal battery wouldn't charge any longer.

She has had a couple of bedsore that were caused by the implant rubbing in her thin skin, so her doctor suggested we remove it. When we went to the neurosurgeon, he suggested putting in a new one in a new location. This one would not need charging, and would not need a remote once the initial programming was set up. You also would not feel the tingling sensation - there would just be a big reduction of pain. We are going in for the programming on Wednesday (she had the surgery last week). The new SCS is a St. Jude Medical Proclaim.

I hope this is helpful to you. Good luck.
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taz0921 Sep 2019
You betcha it is, and I am going to go over all of the articles about this SCS system with a very fine tooth comb, since my pain is Nerve pain, caused by the cartilage being totally eaten away, and the nerves in most of my spine, starting with C2, and going all the way down to S1 (Cervical, Thorax, and lumbar, and the bum bum one where the sciatic nerve splits off down both legs and other parts of my body (not all so far) are being crushed by bone on bone, with no gaps for the nerves to be free and breathe (they don't really breathe, but you get the idea.)
Thank a WHOLE WHOLE bunch, and I hope your grandmother does great, and please keep in touch with any developments about her and the St. Jude Medical Proclaim SCS, which I have never heard of until you made me aware of it.
Stan Z (taz0921)
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