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