Following the unsuccessful procedure I underwent at the end of November (Stellate Ganglion injections), my consultant from the pain clinic presented the future options, one of which had never been indicated before. I hadn’t really been listening to what he was saying until my ears pricked up at the sound of “implanted rechargeable batteries”.
Before even looking up the details of the device, I joked about being turned into a robot, cyborg, robocop, Ironman equivalent with friends. Behind closed doors, I searched for more information, full of butterflies.
I discovered that Spinal Cord Stimulators are battery-powered electronic devices enclosed in a small metal container that are surgically implanted under the skin in the back. Through neurostimulation, they send low levels of electrical energy to nerve fibres to prevent pain signals from reaching the brain. They are designed to allow ‘the patient’ to return to a more normal lifestyle by reducing pain to a more manageable level. The stimulation intensity is controlled via a remote-control programmer that is carried around on the body. Full battery life is currently estimated at seven to nine years, at which stage, the batteries would need to be replaced in a further surgical procedure. When the battery runs low, an alarm will sound and an icon will appear on the programmer screen. It can be recharged with a device which is carried on the body. It takes about six hours to fully recharge batteries and it would need to be done about once a month.
What do we think? For now, I can’t help but see the comic side, perhaps in a slightly sadistic way!
I had a follow-up appointment at the pain clinic last week when we discussed the process of having a spinal cord stimulator implanted. It sounds a little less desirable than the whole comic robocop theory. Apparently it would require a 6-8 week recovery period of pretty serious physical limitation including not being able to twist, bend, lift arms above shoulder height, and presumably discomfort sitting. However, it would appear to be all that is left on the table....
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ecnico15
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Hi, I have read many reports of excellent results from this procedire on a coccyx pain forum on fb.As Pat says a temporary one is used first and if it helps then you have the new one fitted, I would trial it like a shot if given the opportunity. Good luck x
My husband had his operation a week ago, after a trial last August, which has helped to
mask his sciatica. He had to wait for nearly two years for this procedure. It has given him discomfort and pain, where the stimulator was placed, also, on his back, but he says it's worthwhile, if it helps. Now, he has to keep his torso straight, no bending, etc., so the wires remain adhered to the spinal nerves.
i would like to reply to all the comments with regards to spinal cord stimulation, i had terrible pain for 15 years which was caused by lower back problems i was taking pregabalin, tramadol, fentanyl patches 100 mcg/hr and i was still in pain, i had a trial scs dec 2011 and 3 months later had the proper spinal cord stimulator fitted, i have no regrets,it has helped me no end, do not think that it is going to completely cure your pain you still have pain but very greatly reduced. what i say is if you really have a lot of pain you will give it a try if you have any questions please ask and i will try to help.
Of course, the pain and soreness will lesson over time. They have to cut and tunnel through the fatty layer, beneath the skin, to feed the IPG (stimulator) to the right spot, where a pouch is made. The electrodes go in very near the spine, so the muscle is moved to allow this to happen. Obvously, there is internal bruising and it take about six months to heal. Dressings are removed by the surgery nurse after ten days, the stitches come out and you can then shower.
He also wears a back brace, which is recommended, to remind you to keep straight. It's an elasticated back support which straps over your shoulders and round the waist, which is worn for a few hours each day.
They didn't tell my husband very much, but bear in mind, you are cut open in three areas, it's surgery, there are possible problems, infections etc., and a long period of healing. Let me know if you decide to have it done.
Pat, the incisions are... 1. leads placed close to the spine, near the waist. 2. another on the side and finally, for men 3. a pocket to take the spinal stimulator, roughly on the belt line, a little higher than the naval. Please note, for women the stimulator is placed high on the buttock. They need to feed it into a fatty layer, hence the difference in sites. But, please, don't rely on my knowledge, other doctors may prefer other areas.
Thanks for all your comments folks. I'm still in very early stages of investigation re spinal cord stimulators. It's the only thing left on the table treatment-wise, but I'm not sure about it. I'll hopefully be seeing my consultant to discuss it soon. Got to work out what to do next.
Pat, we live in Kent and here, we are required to go on the "pathway" first. This is a long period of assessments, both mental and physical, to see if you could cope with having this procedure. It was the last resort for my husband, following 11 years of failed back surgery. He has spinal stenosis and also suffers cervical spondylosis, having nerve damage in his neck, shoulders, arms and hands, but it's something they are reluctant to operate on.
Can anyone please enlighten me as to the waiting time for this type of treatment, and if possible, is it beneficial, and how long from fitting to being back to full recovery and did it work. Still contemplating whether to go through with this treatment, thanks for any replies.
I have had decades of various major spinal,surgeries, pain management procedures, a thoroscapular fusion following brachial neuritis and a complete pharmacy of meds.
I too have come to the nothing left to offer position except spinal cord stimulation and I go back to the pain management consultant next Wednesday to discuss options after the final procedures he tried mid Nov and mid December - no relief at all from either.
I too live in Kent Missymoomoo so am very interested to know which hospital your husband was treated at? It does sound like major, major stuff and I shudder at the thought of it, but, I'm taking a huge amount of medication with quite horrible side effect and still really struggling in my life.
I agree totally with Paton, keeping on top of the pain as much as possible with meds, heat / cold, pacing an absolute must and I am learning the benefits of 'Mindfulness'
I recommend 'Vidyamala Burch - mindfulness, living well with pain and illness' book and CD.
Wishing everyone as comfortable a day as possible.
I hope your husband is not in too much discomfort - it sounds like a much bigger procedure than I thought.
Very best wishes,
Shirley
I have to admit I would be very nervous of the type of procedure you describe. I'm sure you've already gone through a lot to get to this point. I've only just joined this forum so don't know what you've been through previously.
Whilst respecting the pain consultants they don't know everything , who does? Is it possible to ask to see another Dr without upsetting your own consultant? Getting a 2nd opinion may shed more light on the subject. If the 2nd Dr agrees then I would start looking at the procedure more. I hope this helps. Good luck whatever you decide
Welcome to the forum - I'm sorry you need to be here but hope you find some good info and support here.
I appreciate your input - I have 'tho seen 3 pretty top pain management specialists over the last 5 years and a Neurologist, and a Spinal Surgeon. Sadly I think I have to accept the view that this is as good as it gets and really tough tho that is there is no ( realistic) option other than try and negotiate the territory I'm in as best I can.
I desperately want to continue at least a limited amount of the work I love and do as much as I can to retain 'Shirley'
my pain consultant suggested this to me but I just couldn't go through with it. He said not to take forum talk too seriously as the results are good.... That was a few years ago so perhaps the procedure has become better. Although doesn't sound like it from the discussion above. It's not my idea of a good result if you have to sacrifice mobility.... Is there anything on YouTube? Have you had a fusion? Best wishes
My husband had very limited mobility for 11 years, many procedures and pain that couldn't be controlled by drugs, so for him, it was a final option. He now has to wait for scar tissue to form, to keep the leads in place. So, no twisting, bending, heavy lifting, etc., for six months to allow it to heal.
Yes I've had two neck fusions, an artificial disc in lumbar spine and a thoroscapular fusion. My sons say I'm more metal than Mum 😏
It's a big big decision but I know I don't have to make it yet - if at all. I do trust my GP and the pain management doc. He is talking about referring me to a specialist for SCS - Essex I think??
Hi Shirley, the title says it all! Wine works best for me! :/
Where do you experience the worst of the pain? Was the disc replacement any good at all?! Thank you for sharing... You sound lovely, keeping in best spirits as u can... Xxxx
My best friend has failed spine syndrome with excruciating pain and limited mobility, she has over the last 15 years tried everything that is out there. She had a spinal simulator fitted 3 years ago, and what a difference it has made for her, the putting in of the 'box' was agony and she was bruised and felt awful, but like almost everything with chronic pain, it always boils down to time,patience and perseverance,constant adjustment and not a little bit of faith. It was a good 3-4 months before she got her settings fine tuned, she would have said it hadn't made any difference until after turning off her box when she went into a shop and forgot to turn it back on, then she knew just how much it helped, it isn't a cure, unfortunately there just isn't one for an awful lot of us, but she can do so much more then she did, to the point she can walk her own dog, something that other people in her life have done for her. It doesn't disguise all the pain, but it sure deafens it a bit ! The pain clinic will monitor you for ever, you will never be 'on your own' or out on a limb, and you will always have us lot. I wish you some peace,some sleep and not a little bit of luck. L.
I think I'm still a long way off this step, it's pretty huge considering it appears to be the only option left. I'm pretty scared of the prospect of such an invasive procedure.
I'm based near Cambridge, I've been with the Pain Clinic at Addenbrooke's for 3 years. I'm trying to take a bit more control using alternative treatment, including mindfulness, meditation and some gentle yoga. Keeping to a healthy diet is helping too, and I'm doing my best to maintain a good routine, but it's really hard. X
Cambridge is my home town and I was in Addenbrookes after my first RTA aged 18 😳
I totally agree it's a huge consideration which I must admit I find very scary.
I'm also trying to manage my condition by firstly accepting it and the limitations it has brought to my life - hard stuff as I have been fighting it for years. I'm also trying to get into mindfulness - I discovered 'Vidyamala Burch - Living well with pain and illness' book and CD - recommended as she has lived with what we do.
I guess I'm holding out for stem cell therapy to re populate/hydrate the discs like rafael Nadal - lol - as if my spine bears any resemblance to his BUT...... There is also the genesis of external stimulators that are being developed for war veterans with nerve/limb disability... robotics.... I know... I know... Totally in denial.
I have just gone through all the assessments for the spinal stimulator (which included the pain consultant and psychologist), after suffering with CRPS for over three years and no other treatments have even remotely been helpful.
I am under a pain clinic in Windsor, Berkshire they have been fantastic, the specialist pain nurse was amazing and took me through the whole procedure. As mine will be going in my neck, as it needs to be attached to the nerves that feed into the shoulder and arm I wont be able to move my head for two weeks then gently and slowly start increasing the amount of movement over 6-12 months. My thinking is, the technology and the procedure has advanced significantly since its early days and although there are risks and I have been warned that it is extremely painful to have fitted and for a while after, anything has to be better than the pain I am currently in. Most days I cant even pick up a pencil with my left hand, and although it has sadly spread to other areas of my body, the left shoulder and arm are by far the most painful so that is what is going to be targeted, I have been warned that I may need two wires as separate nerve spurs may need to be targets to get relief in the shoulder and the arm, but that's fine by me.
My trial is going to be mid April and at the clinic I attend the wires that are placed for the trial are the ones that will be left in permanently if it works so the permanent system is put in straight after the trial if it is successful. I will keep everyone updated when I get it done, but for those who are unsure ask if your pain clinic has a pain nurse and see if you can see them to talk it through.
I wish I had your courage! For me also I have run out of options. I have done everything I can, without success. I am trying to talk to myself and keep asking how can I live like this the rest of my life?? I am unable o sit without ice pack, 24/7. If I walk or stand it sets the nerve off in my rectal anal site. I have excruciating pain &burning. On top of it all I have spinal cord injury. I am thru with meds as they make me sicker and sicker, and pain management with injections do nothing to help. I live in my room mostly these last few years. I have many internal problems too that make me unable to function like I did before all this happened! I wish I could handle spinal cord stimulator. I just don't think I could handle any more distress after reading the things on this post, some of them. I'm just not sure how to survive!!
Good luck to all of you!!! Blessings & prayers!!!!
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