“Charter of Rights for people living with Chronic Pain
We have the right to be believed.
We have the right to be treated with dignity and respect.
We have the right to have our pain treated and managed at the earliest possible stage.
We have the right of access to the best possible technologies and therapies in pain treatment and management.
We have the right to be informed about all the pain management options available so that we can make best decisions and choices for our wellbeing.
We have the right to live with the least amount of pain possible.
We have the right to be treated on at least an equal footing with all others who have been diagnosed as having a chronic illness.
The Relief of Pain should be declared a fundamental human right as per the central theme adopted by IASP, EFIC and the WHO at a conference in Geneva on the 11th October 2004. We should not be left to suffer in silence and ignorance.“
Drawn up and approved by the Governing Body of Chronic Pain Ireland on the 19th November 2009
If you are in chronic pain then the above can really ram home the debilitating effects of chronic pain where you or someone close to you suffer on a daily basis and also where this “Invisible war on pain” needs to be fought;Just because you don’t have visible broken bones etc it can be soul destroying for years and decades
Right lets crack on….but first this: I am not a doctor, I am not affiliated with any hospital, SCS manufacture, doctor, company, etc. I’m a person who has an SCS, I know others with SCS so I know what questions and fears people have and I made, hosted and bought the domain name of this site with my own money to help others who were like me scouring the internet getting all the wrong info and terrifying myself in the process. I am you!
If the site helps leave a comment. If you’ve a question-ask it.If you think the site is crap-leave a comment. If you’ve a question that you want to ask privately email me at firstname.lastname@example.org.Ive also tried to keep the questions BS free, simple short facts, if you want more in depth info about anything leave comment. If you want to correct me on anything feel free to leave a comment-im no SCS expert………….It’s a completely different experience hearing from someone who’s been there done that then it is coming from a doc and if you’ve very long term chronic pain faith in doctors diminishes year by year if not purely for the fact most of them think the pain is in your head!!!!!
So what’s all this SCS stuff about then?
HIQA(a non biased organization who are responsible for driving improvements in the quality and safety of healthcare on behalf of patients. We develop standards, monitor compliance with standards and carry out investigations where there are reasonable grounds to do so.) describe an SCS as:
Spinal cord stimulation (SCS) is used to relieve chronic, intractable pain of neuropathic or ischaemic origin. The International Association for the Study of Pain defines chronic pain as persisting beyond normal tissue healing time, assumed to be three months.SCS is a form of neuromodulation reserved to treat pain that has failed to respond to conventional measures. It is most commonly used for neuropathic pain (i.e. pain due to damage of peripheral nerves) which is initiated or caused by nervous system damage or dysfunction, and includes conditions such as failed back surgery syndrome (FBSS) and complex regional pain syndrome
(CRPS)Other conditions include phantom limb pain, central pain (e.g. post-stroke pain), diabetic neuropathy and post-herpetic neuralgia.As those affected often have a complex history with unclear or diverse causes and comorbidities it can be difficult to manage Ischaemic pain is caused by a reduction in oxygen delivery to the tissues, usually due to reduction in blood flow because of constriction or obstruction of a blood vessel.Ischaemic pain is commonly felt in the legs or as angina, but it can occur anywhere in the body
A Spinal Cord Stimulator is a specialized device, which stimulates nerves with tiny electrical impulses via small electrical leads placed against the spinal cord; it also is called a Dorsal Column Stimulator, Neurostimulator, or Neuromodulation device.
Is it like a TENS unit?
Not at all no
Does wifi/phone signal affect it?
I still don’t really get it?
A battery(about the half the size of music cassette) will be placed in your buttock or stomach area mainly(can be placed other areas too)and leads in your spine will send electrical currents to stop the pain signal reaching your brain, in essence, it tricks your brain into thinking there is no pain
How can I trick my own brain? Aren’t me and my brain the same?
Yes but isn’t it your brain causing your pain in the first place? It’s strange when doctors talk about your brain and your body as if they were two different things and I guess they are in a sense but that’s way above my head
Where will these magic leads be placed during the trail?
Mainly upper or lower back but dependent on pain areas can be placed in other areas and they will be your leads for the foreseeable future. If you go ahead with the full implant (Stage 2,because you got 50%+ pain relief) these leads stay in-These are now your leads
This whole thing sounds crazy!
Tell me about it!!- But SCS therapy has been proven safe and effective and has been in use for more than 40 years. Hundreds of thousands of people worldwide have been successfully treated with SCS. The first neurostimulators were created in 1967, so 45 years ago. The FDA has approved these devices and they have gone through many improvements over the decades. The improvements have come in the form of better leads, better programming(see stage 2) and best of all there smaller, oh yeah baby!!!
Will I have a lump where the battery is placed?
Yes, it is visible but if you can reach 50% pain relief do you care. Some people do, some don’t…Its not a major thing
So this will fix me then?
Nope and this is very important-This will not take your pain away but it will lesson your pain hopefully by 50%+ so you can start living again and will reduce all those horrible pain meds-You will not be 100% pain free
So it will at least help then?
50% pain relief or above is the recommendation, anything less and maybe it’s not for you.Many people report pain relief of up to the high 90s percentile,completely changing their lives(well 90% i guess)from being bed bound to going back to work,running,going to the gym,anything is possible.You wont know until the trial is over
My pain is too way bad for some battery and leads to have any effect!!
I hear ya.Ive personal experience with this. I thought I was too far gone and nothing could ever dampen down my pain but as I’ve said SCS can sometimes be the last shot……
But I’ve got pain in multiple places?
An SCS can work for you-Ask your doc…………
Loads of them including:
- · Allergic reaction to the implanted materials
- · Bleeding
- · Infection
- · Pain at the incision site (usually resolves in a few weeks)
- · Weakness, numbness, clumsiness, paralysis
- · Battery failure and/or battery leakage
- · Fluid leak from the spinal cord, causing headache
- · Undesirable changes in stimulation
- · Migration of the electrode lead may occur, resulting in a loss or change of stimulation
- · Skin breakdown over the generator or electrode site
- . Many more-Ask your Doc
Lead migration is the biggie there in that list this most common although the fix is relatively easy,the rest are very rare………
Will insurance cover me?
Ahh the old insurance conundrum,check your policy.Insurance companies are great with their fancy TV ads and brochures but when it comes down to it many can stall on this as its so expensive.Pester,annoy,bother,badger and disturb whoever you need to try to make it happen.No one else will do it for you………
I have no insurance-How much?
€16000-30000 dependent on where you live/make/model enormous cost are involved.Some SCS are non rechargeable,some you charge every day.Different countries may make for different costs (ill get more into that).You can get it with no insurance if you have the dough but the cost as I said really are huge and if it’s not going to work for you I can see the blood draining from your face now but see the next question below. As far as I know non rechargeable batteries are on the way out-Ask your doc
What’s the point of getting the implant if there’s a chance it won’t work?
Great question!! 🙂 There are two stages to getting a SCS.Stage 1(Trial) and Stage 2(Permanent implant)
Stage 1 is a temporary external SCS (I’ll go into more detail about this) so you will know if the permanent device (stage 2) is ok for you.Rememeber stage 1 is in itself a surgery, Stage 1 is about €2000+ dependent on where you live. If it doesn’t give you relief of 50% out she comes and at least you can look back and say you tried instead of pondering what if. So you can get the trail and not go ahead with stage 2.Like taking the car of your dreams out for a test drive before you purchased,if you don’t like it hand back the keys………….
Do the surgery’s hurt?
No more than other surgery’s-Its all relative to ones pain threshold
How big are the incisions?
There are two incisions. The one for the neurostimulation pocket depends on the size of your neurostimulator and where. The other, made on your back, is 2 to 3 inches long where the leads will be pushed up your spine.
Can I get an SCS if I have pacemaker?
Really don’t think so-Ask your Doc
I can travel right?
Yep,travel the world, see the sights, see the seven wonders of the world or stay at home watching daytime TV.The choice is always yours.You will however be given a special card for airports because the magnetic field of the metal detector can damage the SCS
Can I still take my pain meds during the trail?
Ask your doc.Best to taper off them awhile while getting the trial maybe.Everyone is different
What do I get for my dough?
An SCS system includes the following items:
- Neurostimulator or generator—A battery implanted device….
- Lead-A thin wire with several electrodes or contacts that carry mild electrical pulses from the neurostimulator to targeted areas of the spinal cord, two are usually used picked-This is all relative to your pain, different areas, different lead locations….
- Patient controller—A remote control device that the patient uses controls the pain-Literally a remote control(see stage 1)
Can it be taken out if I don’t like it?
Yep,lots of people have got it taken out because of various reasons…
How long does the battery last?
Depends on model-(See stage 1)
Can I have a MRI with the implant?
No-CT scans possibly
Does it make noise?
Nope, not a sound
I don’t know sounds a bit “out there”:
It is, it’s really important to read as much info educate yourself and talk to others and ring around, it does sound a bit “space age” when you hear of it first. It is a major life decision but can also change your life in major way…
Right lets go, I want one? Gimmie, Gimmie,Gimmie……
Whoa nelly!!SCS are only offered to the worst of the worst(I know that sounds horrible but I mean it in the sense of there’s just nowhere else for you to turn for pain relief).You need to go through every other type of treatment first to see if this makes a difference like physio,nerve blocks, physical therapy, psychotherapy, medications, surgery the list goes on. If you’re suffering from back and/or leg pain after back surgeries (failed back surgery syndrome), neuropathic pain, or RSD (Reflex Sympathetic Dystrophy) or CRPS (Complex Regional Pain Syndrome).The above bit in italic is copied and pasted from another much more medical lingo site.I don’t know what these conditions are besides failed back surgery syndrome and neuropathic pain which I have myself.The reason I say this is because im sure there are 100s of types of pain an SCS may work for-I don’t know im not a doctor…
**In short if you’ve been suffering from any form of debilitating chronic pain for years that you just cannot manage or find an answer to then an SCS may be an option for you so don’t give up hope
An “OK” is sometimes also needed from a psychiatrist.This is just more to inform you of what an SCS can realistically do for you-I wouldn’t fret about it.Remember you will have a foreign object in your body and some people although they think they will be fine with this are not. There is an SCS that is very common that causes tingling instead if pain and the tingling can be too much for people. There is also an SCS which does not have any tingling at all so this problem is eradicated-Dependent on where you live they have different SCS.Ask your doc
Ok I really think I’m a candidate, I want more info
Then click on “Stage 1” at the top of the page