Hello & best regards to all.
I've had the trial device installed and have been attending the clinic every day so all this week so that the technicians can map the areas most needed. Sadly, they are unable to reach the actual area as I have "dead zones," but, I know what it feels like to have a power station "up your botty." When the technicians were trying to map a zone, I nearly smashed through a wall. These are definitely more powerful than any TENS device I've used.
At least with a TENS device, you place the sticky pad over the area affected. With the device I am trialling, wires are surgically inserted into the spine and the machine gets turned on. Too much power and you end up going through the ceiling with 4 people constantly saying sorry. I'm convinced that 2 ex girlfriends are behind the surgical masks.....
I've been given only 1 program to use. They can program this device to offer 4 or 5 different types of zapping. Sorry, best way to describe it. Zapping feeling. I only received 1 program to trial. Its zapping my lumber (a bit), but definitely zapping into my legs which is useless, except for friends and neighbours to get a giggle out of. It does reduce the pain when I go to stand up (which is usually murder), but, that's about it. I have to head out Sunday, so, it'll be a good test to see how walking beyond 25m (usually a problem) goes.
I'm one of the lucky one's. Nothing ever goes smoothly for me. For instance, I didn't catch 1 type of malaria, but 2.....
Instead of a simple fusion of L4, I end up with 8 surgeries to fix the 1st "simple fusion."
Explained to the technicians that it wasn't working and then bang, its hit you as though you've been electrocuted. They are unable to reach the area most needed because of "dead zones" and that my spine is twisted (nearly typed mind then...), so, a bigger jolt is needed.
So, theory is that by hitting any area that is near to where my problems are, it might help. I can hardly walk because of the zapping going on. Feels like a warm blanket with alot of jolts hitting me. Hope nothing else is giving me a warm lower torso feeling.....better check.
Anyways, I have a feeling that I won't be getting this device installed "fully." Its not MRI compatible and its not doing much for pain relief. I'm spending my time doing a funky chicken dance going to the kitchen.
Maybe the theory of scrambling the rest of your body (I've got a zinging feeling in my elbows too) distracts the brain from the dead zones?
Anyways, I'll let you know what happens in the end, but, to me, this is a way of getting patients off opiates for pain relief and that's wrong.
I hope that y'all are doing ok today and that the pain doesn't treat you too badly!
Hi Bluerob,
On the trial you only get one setting, the only control you have is the strength, this device doesn't suit all patients, just like medications, it's why they do the trial.
Yes they are definitely stronger than tens units, some days I have no choice but to turn up the zapping as you call it, it's the only way to reduce pain, the downfall is being zapped, which gets stronger when you sit or lay down.
When mine was trialed and the final implant I was put to sleep, when the had the leads in place they used the stim to wake me up to see if they were in the right position, I too nearly hit the ceiling, with sorry's coming from the surgeon with humorous tones.
I also don't get full coverage of pain areas, it covers my lower back and legs, pain is still extreme above the coverage area, and they can't get that covered, even after numerous re programmings.
Don
Hi Bluerob,
On the trial you only get one setting, the only control you have is the strength, this device doesn't suit all patients, just like medications, it's why they do the trial.
Yes they are definitely stronger than tens units, some days I have no choice but to turn up the zapping as you call it, it's the only way to reduce pain, the downfall is being zapped, which gets stronger when you sit or lay down.
When mine was trialed and the final implant I was put to sleep, when the had the leads in place they used the stim to wake me up to see if they were in the right position, I too nearly hit the ceiling, with sorry's coming from the surgeon with humorous tones.
I also don't get full coverage of pain areas, it covers my lower back and legs, pain is still extreme above the coverage area, and they can't get that covered, even after numerous re programmings.Don[/quote
Don,
Many thanks for taking the time to reply.
Looks as though I'm in the same boat as you, except I am thinking that I am going to refuse the actual implant. The trial isn't exactly my idea of what to expect. It was explained to me prior to the wires going in "its just like a TENS unit, but, a bit more powerful and we can map the zone." Sounded good at the time, like most things.....
This zapping is exactly as you describe it. Some goes into the pain area, but, the majority of the signals are going into my legs, making me walk as though I've had an afternoon at the local. Then I'm getting it in my elbows as well. Thankfully my arms aren't flailing about, otherwise I'd have bugger all chance of drinking a coffee without a lid on the cup!
The intensity when I sit down is enormous. I'm almost afraid to sit down and I've only got it set on level 2. Putting it any higher would have me shaking. Its taken me 15 mins to type this far.
I know that "Pain Management" has been around for a few years, but, everytime I follow the advice of the PM specialist, something worse happens. I'm really unsure about these dudes. I had one once tell me to meditate and shoo the pain away? It'd be great if I could "tell the pain to go away." Wouldn't needed 8 surgeries.
Thanks again for your message.
Back to trying to hang on to the coffee cup!
Hi bluerob,
In the same boat with meditation, it is used as a tool in pain management, the problem I have is clearing the mind to actually meditate, and it is not just the pain limiting that task, I am also one for which hypnotherapy can't be performed on, many have tried and failed, again clearing of the mind is the key.
One of my problems in getting to sleep is my mind is so active, takes a good hour or more before I drop off, and pain levels need to be low before even trying, then if I do fall asleep any noise and I am awake, then can't get back to sleep, beds anyway increase my pain levels, I can only lay on my back with knees bent to get any sleep, and when I do wake it is because of pain even being in a position which poses less stress when laying down.
Don
Hi bluerob,
In the same boat with meditation, it is used as a tool in pain management, the problem I have is clearing the mind to actually meditate, and it is not just the pain limiting that task, I am also one for which hypnotherapy can't be performed on, many have tried and failed, again clearing of the mind is the key.
One of my problems in getting to sleep is my mind is so active, takes a good hour or more before I drop off, and pain levels need to be low before even trying, then if I do fall asleep any noise and I am awake, then can't get back to sleep, beds anyway increase my pain levels, I can only lay on my back with knees bent to get any sleep, and when I do wake it is because of pain even being in a position which poses less stress when laying down.Don
Crikey, you sure we ain't sharing the same body, but, in alternate universes.....?
I've found after 6 days of "Mr Sparky" going, it helps alot when I go to stand up. That's my main problem. Doesn't matter if I'm seated or lying down for 5 or 50 minutes.
I'm yet to "really give it a go." I'm tempted to take my boat out on the lakes and see how I go with pain levels. I've also learn't the hard way to keep the remote in my pocket. My best mate visited the other day and played with the remote. I ended up on the floor before I could pull the plug. Some peoples sense of humour.....
I'm back at the clinic today for a recharge and further tests.
Thanks again for your messages. Greatly appreciate your views and experience with these devices etc.
Best regards
Rob
Hi Rob,
After years of having my boat in hibernation in the shed, since just before Christmas she's out, been serviced and hit the water, my decky(wife) comes along to help launch and retrieve it, reversing down the ramp is my job, using my mirrors, years of truck driving taught me those skills, she also brings in the anchor, back can't handle that, saving up for an electric winch.
The reason for the years of hibernation, first it was the original injury, leading to the first operation, then no improvement, just got worse, then a second operation, caused more damage including nerves, then years of uncontrolled pain, no sleep, then having my second heart attack, and then a third, the stim was my last hope, while not perfect, it has enabled me to get back into the boat, but I do pay a the day after, I take this as a part of life now, I enjoy the time on the water, bobbing in the ocean tangling a line, no one around to hassle me, relaxing taking in the salt air, then back to the rat race when I come in
Don
Hi BlueRob. If you don't mind me asking, what stimulator are you being trialled with? Some of the devices do one thing only, which is why you only get one program on your device. That one thing may work well for some people, but for those it doesn't work for there is no plan B. There are stimulators available now that have a lot of options in the one device. It might be that your doctor doesn't use these for whatever reason.
Hi BlueRob. If you don't mind me asking, what stimulator are you being trialled with? Some of the devices do one thing only, which is why you only get one program on your device. That one thing may work well for some people, but for those it doesn't work for there is no plan B. There are stimulators available now that have a lot of options in the one device. It might be that your doctor doesn't use these for whatever reason.
Hi MJ
Thanks for your message.
The device is labelled Saluda.
Because I've got issues with my spine, the technicians were having difficulty with mapping the required area.
Yesterday, I spent another 2 hours getting zapped and it was decided that the best they could offer was what they sent me home with. I've now got 2 different programs to use and I can control the intensity.
Problem I have is that they can't zap the area needed. Instead of it working in my lumber area, its zapping a little of the lumber, but, the majority of the signal is going into my legs. If the zapping was in my actual lumber area, it'd really help.
I have to trial this for the next 4 days and then I might get something different or stay on high doses of opiates. I have alot of "dead zones" which I think is the area that needs attention, but, because of issues with my spine, they can't get the leads to work properly. I was getting zapped in the rib cage.
This trialling is very exhaustive for me. 2-3 hours for 6 days of test zapping really tires me out. Feels as though I've been punched a 100 times in the ribs.
I find out more this coming Friday. There might be other alternatives. Don't know yet.
Thanks again for your meesage.
Rob.
G'day Rob,
It has been a very long time since I posted in this group but thought I would share my experience with you!
I am almost 5 weeks post-op from having a permanent spinal cord stimulator placed after having a successful trial.
I have the brand Nevro which is a much higher frequency than other brands and there is no zapping, tingling or other sensory overloads! We have not found the correct program for my pain yet, took a bit to find the right program during the trial so I am not overly concerned at the moment.
There is a FaceBook group for spinal cord stimulators which has a wealth of information and experiences, some good, others not so good. I have never heard of the brand Saluda,
With Nevro all the programming was done via the phone during the trial and the tweaking so far has also been done via the phone. I see my pain specialist again tomorrow and one of the Nevro reps will be present for reprogramming. I have a remote to change programs and intensity levels.
I wouldn't give up on the prospect of a spinal cord stimulator helping your pain just yet, maybe this brand isn't the right one for you. The trails are an excellent way of evaluation.
Good luck, all the best, take care
G'day Rob,
It has been a very long time since I posted in this group but thought I would share my experience with you!
I am almost 5 weeks post-op from having a permanent spinal cord stimulator placed after having a successful trial.
I have the brand Nevro which is a much higher frequency than other brands and there is no zapping, tingling or other sensory overloads! We have not found the correct program for my pain yet, took a bit to find the right program during the trial so I am not overly concerned at the moment.
There is a FaceBook group for spinal cord stimulators which has a wealth of information and experiences, some good, others not so good. I have never heard of the brand Saluda,
With Nevro all the programming was done via the phone during the trial and the tweaking so far has also been done via the phone. I see my pain specialist again tomorrow and one of the Nevro reps will be present for reprogramming. I have a remote to change programs and intensity levels.
I wouldn't give up on the prospect of a spinal cord stimulator helping your pain just yet, maybe this brand isn't the right one for you. The trails are an excellent way of evaluation.
Good luck, all the best, take care
Hi Florrie
Thank you for your message. I greatly appreciate your comments!
It was decided that the trial wasn't a success and that I am to trial another type of device.
The new device has 4 leads whereas the device I trialled had 2. I'm hoping that the new device will help me out. I'm sick of taking opiates and I'm getting very tired of having constant pain.
There was no mention of any brands, just trying out a 4 lead device. Here's hoping!
Thanks again
Rob
G'day Rob,
I am not a full bottle on all the different SCS's that are available, I only know the Nevro runs at a much higher frequency than other brands and doesn't cause any zapping, buzzing etc. The Nevro has 2 leads! Maybe you could ask your specialist about the possibility of trialling a Nevro.
Either way, I wish you the best of luck for your second trial and hope you get relief.
G'day Rob,
I am not a full bottle on all the different SCS's that are available, I only know the Nevro runs at a much higher frequency than other brands and doesn't cause any zapping, buzzing etc. The Nevro has 2 leads! Maybe you could ask your specialist about the possibility of trialling a Nevro.
Either way, I wish you the best of luck for your second trial and hope you get relief.
Thanks again for your messages.
I had problems with the 2 lead device, in that, 2 leads couldn't "hit" the right area. The technicians spent 6 days trying to map the device, without success. This is also due to my spine being out of alignment.
Thanks for your best wishes. Being stuck at home 99% of the time because of pain and mobility issues wasn't in my life plan, but, things happen.....
Kind regards
Rob.
Hello and I hope everyone is doing ok.
Its been a few months since my last post (goes to show you how great our medical system is, even with a comprehensive and expensive private health cover).
Been waiting since my last post to see what the doctors want to try on me. I was told after the 2 lead device having not worked, will be replaced with a 4 lead device, but, found out by mistake yesterday that my doctors are arguing amongst themselves as to the best way forward.
A 4 lead device impedes MRI scans, my neurosurgeon wants me "to put up with it until you can't." Some days are alot worse than others. As for cold weather, lord.
Anyways, that you are all doing ok and many thanks for the replies and comments. I greatly appreciate you taking the time to write about your own experiences.
Gee bluerob,
Have you felt like slapping the doctors around the ear yet ,you would think they could make up their damned minds about what to do.
My doctor and I work together and adjust pain meds to pain levels when this happens I find myself a bit shakey and doughey a few days and it settles down .
Hope you get some relief when your bunch of doctors make up their minds.
Johnno
as long as I wake up alive I'm happy Because it could be worse
Gee bluerob,
Have you felt like slapping the doctors around the ear yet ,you would think they could make up their damned minds about what to do.
My doctor and I work together and adjust pain meds to pain levels when this happens I find myself a bit shakey and doughey a few days and it settles down .
Hope you get some relief when your bunch of doctors make up their minds.
Johnno
😆 x 100
Mate, after having 8 x surgeries on my spine, suing a neurosurgeon, told by a Professor involved in PM telling me I could scuba dive again (put the gear on in the water, but, because of my scar tissue I'd end up in a wheelchair or die) and a few other "things" I just wonder:
"What the hell has happened to this country and its medical services?"
I know that not all doctors and specialists aren't all useless, but, I can't help but ponder the words "medical practice....."
I think my current team are pretty cool and I'm happy. I guess they have other patients on hand also. I know my neurosurgeon is busier than lizard drinking.
Oh, forgot. If you say bad things to an idiot (s) then you get into trouble and they don't. Tempted to twist some noses, but, can't go belting people about the head...... :woohoo:
I've been told "you're a maintenance case, not a cure" so, I just sit at home taking pills until I have to undertake a medication detox, start again and wait until the doctors decide.
I've been told "if you can't handle the pain, we can admit you." So, I get morphine needles, get sent home and start all over again. I know this reads as nonsense, but, I'm serious.
As I'm "written off" wiith no hope of recovery, I just do what I'm told.
