Hi Tim, great news you are getting some relief, life changing I'm sure! Can I ask does the stimulator restrict any activities e.g. swimming? How have you found life coping with it?
I wish you all the best for the permanent one
Newbie needs help!
Re: Newbie needs help!
Dear Desperate,
I am happy to share my experience with my trial stimulator. To be clear. My back pain is minimal compared to the pain in my groin, (rectal , scrotel pain) to be exact... Also pain in my left leg and foot. All neuropathic pain. So the stimulator was targeting the waist down. Not my back. But my impression is it worked well for neuropathic pain. It did nothing for my Central nervous pain.
They program it initially and then I was allowed to alter that programing to try and block my pain during the 3 day trial. As you likely know it uses electrical pulses to try and block through the stimulator in your spine. You can change the intensity, speed and width of the pulses with a remote control. When they do the waist down and need to get both sides, it can be tricky for them to get both sides ( right and left legs etc. I was lucky he was able to and really very quickly.
In a way you're replacing your pain for this electrical pulse which some find soothing and others I am sure find annoying but certainly better than being in pain.
I found that a lower setting which caused a ... prickly sensation at my tail bone to my feet seemed to do the trick used while relaxing, rather than having it on very strong. Although during my worst flare ups I would sometimes turn it on very very strong. All I can really say is it worked very well for almost all my neuro pain but one small spot in my groin. They seemed confident this could be programed to fix. I found the surgery rather easy compared to others. The post pain is no fun but goes away in just a few days. It did wonders on my feet and legs.
One thing I would just be aware of is you end up working with your pain doc and a sales person from whatever company is selling the stimulator. I was lucky that my sales person who is there for every step, was truly a caring person and not just trying to sell me something. There are differences in models and companies. I had to ask allot of questions. I was glad it was the company I wanted. If you have any specific questions please msg me and I will do my best to answer.
It is an invasive procedure and certainly something I would and am doing as a last resort when meds and other things have failed me. I hope this helps some... Tim
I am happy to share my experience with my trial stimulator. To be clear. My back pain is minimal compared to the pain in my groin, (rectal , scrotel pain) to be exact... Also pain in my left leg and foot. All neuropathic pain. So the stimulator was targeting the waist down. Not my back. But my impression is it worked well for neuropathic pain. It did nothing for my Central nervous pain.
They program it initially and then I was allowed to alter that programing to try and block my pain during the 3 day trial. As you likely know it uses electrical pulses to try and block through the stimulator in your spine. You can change the intensity, speed and width of the pulses with a remote control. When they do the waist down and need to get both sides, it can be tricky for them to get both sides ( right and left legs etc. I was lucky he was able to and really very quickly.
In a way you're replacing your pain for this electrical pulse which some find soothing and others I am sure find annoying but certainly better than being in pain.
I found that a lower setting which caused a ... prickly sensation at my tail bone to my feet seemed to do the trick used while relaxing, rather than having it on very strong. Although during my worst flare ups I would sometimes turn it on very very strong. All I can really say is it worked very well for almost all my neuro pain but one small spot in my groin. They seemed confident this could be programed to fix. I found the surgery rather easy compared to others. The post pain is no fun but goes away in just a few days. It did wonders on my feet and legs.
One thing I would just be aware of is you end up working with your pain doc and a sales person from whatever company is selling the stimulator. I was lucky that my sales person who is there for every step, was truly a caring person and not just trying to sell me something. There are differences in models and companies. I had to ask allot of questions. I was glad it was the company I wanted. If you have any specific questions please msg me and I will do my best to answer.
It is an invasive procedure and certainly something I would and am doing as a last resort when meds and other things have failed me. I hope this helps some... Tim
Re: Positivepoppy
Positivepoppy, It's odd. They only give you 72 hours of a trial and now I have to wait a month to get the permanent one. I just recovered from the trial. So I only got a glimpse of what life may be like. It will be better but 50% of miserable is still not great. But in conjunction with meds and lifestyle changes I hope it to become much better. In the mean time I am using meds I really don't like the side effects of at all. Oh yes you can swim once you get the permanent one and 6 weeks have gone by. You cant lift over 5 pounds or trist and things for 6 weeks so the leads don't migrate. This means another surgery.
Some docs do up to a 7 day trial and I think that is better to make an informed decision. However, there is more chance of infection etc. You also have to get a psychological evaluation if you're on Medicare. Mostly just to make sure you know what your getting into. The month is to get that done and heal fully before the full surgery where they also put a battery in me... I will certainly post on my progress when I get there.
I am new to the board. There must be a better way to respond to individuals I am missing... lol I hope you see this. Thanks Tim
Some docs do up to a 7 day trial and I think that is better to make an informed decision. However, there is more chance of infection etc. You also have to get a psychological evaluation if you're on Medicare. Mostly just to make sure you know what your getting into. The month is to get that done and heal fully before the full surgery where they also put a battery in me... I will certainly post on my progress when I get there.
I am new to the board. There must be a better way to respond to individuals I am missing... lol I hope you see this. Thanks Tim
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Positivepoppy
- Posts: 174
- Joined: Mon Feb 24, 2014 2:49 am
- Location: uk
Re: Newbie needs help!
Hi Tim
Thanks for responding and giving an honest account. Seems odd you have to wait a month but at least you know it is coming. Did you have decompression surgery, I guess the stimulator is a last ditch attempt to regain quality of life.
I wish you all the best and sincerely hope this works for you.
Thanks for responding and giving an honest account. Seems odd you have to wait a month but at least you know it is coming. Did you have decompression surgery, I guess the stimulator is a last ditch attempt to regain quality of life.
I wish you all the best and sincerely hope this works for you.
Re:Positivepoppy
Hi PositivePoopy,
I had a fusion of L4 and L5 in 1997. I injured my spine when I was a teen but refused surgery then. So I waited 25 years till they tech was better and I really needed it when the discs blew while reeling in a very large Marlin. The scar tissue from that led to neuropathy in my legs and feet recently. What exactly has caused the PN is unknown. BUt the onset was shortly after the neuropathy diagnosis. It made my back and leg pain seem ... inconsequential. So yes this is a last ditch effort. It started about a year or maybe more ago, doctor ignored it. It became unbearable about 3 months ago. I am doing better on 20mgs of cymbalta. Its the smallest dose they make. Its the only med that has ever really worked. 30mgs was not tolerable. I just do not tolerate SSRI's well. It comes with side effects I would normally not be willing to tolerate. Aggression, ( Arg!) Restlessness, exhaustion, nausea. etc. But all that is better than where i was. Honestly I am nervous about this choice of the stimulator. But I don't know what else to do. I am not sure I will be able to get off the cymbalta or not. My hope is with time and some PT after the stimulator I will be able to and regain some normality. Thanks much. Tim
I had a fusion of L4 and L5 in 1997. I injured my spine when I was a teen but refused surgery then. So I waited 25 years till they tech was better and I really needed it when the discs blew while reeling in a very large Marlin. The scar tissue from that led to neuropathy in my legs and feet recently. What exactly has caused the PN is unknown. BUt the onset was shortly after the neuropathy diagnosis. It made my back and leg pain seem ... inconsequential. So yes this is a last ditch effort. It started about a year or maybe more ago, doctor ignored it. It became unbearable about 3 months ago. I am doing better on 20mgs of cymbalta. Its the smallest dose they make. Its the only med that has ever really worked. 30mgs was not tolerable. I just do not tolerate SSRI's well. It comes with side effects I would normally not be willing to tolerate. Aggression, ( Arg!) Restlessness, exhaustion, nausea. etc. But all that is better than where i was. Honestly I am nervous about this choice of the stimulator. But I don't know what else to do. I am not sure I will be able to get off the cymbalta or not. My hope is with time and some PT after the stimulator I will be able to and regain some normality. Thanks much. Tim
Re: Newbie needs help!
Hello Tim--Others have asked you the manufacturer of the stimulator you have. I believe you haven't answered. What is brand? Medtronic states "not approved for pain" or some similar statement. Anyway , good luck, best wishes. holmb