[moosey2me]

I am hoping to get some insight on the neurostimulator...I first have to go to a therapist..what do I need to know about going there?why is that needed?My doctor did not tell me that..Is it because they want to make sure we are not crazy?????The pain is what drives us crazy!!!!I have been going through a lot lately,a dear relative past away,so I just been away ..trying to take it all in..so,anyway if anyone can help me out with everything that would be great..I get really nervous..Oh ..listen to this my doctor does not understand why I am hyper..I said its because I try my best to be happy..I swear he wants me to cry... ,and feeling sorry for my-self ,,it is a waste of time..I am not sure what this doctor wants..one time I went and was in a lot of pain..he said what do you want me to do??What did you do different!!!!I swear who's the doctor..me or him....

[chaos]

I believe it's so they know you're in the right space to get it. To make sure you know the realism of what to expect (like that it won't cure you). But I also wonder if it's just your type of insurance? I have Anthem if that makes a difference.

I did NOT have to do this for my pain pump. But my doc also knew that I read a lot about it, I have a high intelligence, that when she talked to me about it there was no miscommunication. I'm a calm person that takes information home and thinks about it, I don't just listen to the doc or take what they have to say as gospel.

[AZ-Di]

Moosey,
Please read my reply under RSD/Renee's post "How is everyone".
My hand limits the amount of typing I can do on here.

I did the Spinal cord stimulator trial. Is the neurostimulator the same thing?

Yes, I had to do the Psych. evaluation. That really got me too. I've never
had mental issues (I'm 54), dependable person etc.....

[Nanc]

neuromodulation, neurostimulation, spinal cord stimulators, etc, they are all the same thing.

A psych evaluation is always required prior to getting stimulators implanted permanently, most insurance companies will not approve the procedure without one. Like chaos said, they want to make sure your expectations are realistic and they want to make sure you are not suicidal. They don't want to pay a $100,000 claim and then you off yourself.

I was not happy with my evaluation either. The dr doing the evaluation said I was depressed and she was "concerned" about my mental state...REALLY??? She drug out of me things from my childhood, bad things, that I have dealt with already and moved on from. At the point I saw her, I was very angry at the drs I had seen up to this point...like 12 drs in a year until I was correctly diagnosed and at that point treatment was not effective. My pain dr told me that she didn't know me, just go thru the additional appts she required so she will get to know me better and approve the evaluation. So, I went to a few more visits and she approved it. It ended up being fine.

So, don't worry about it, it is part of the process. Also, I need to add this - you need to be 100% comfortable with your dr before you allow him to implant a SCS in you. If you are not comfortable with him, find a new one!

All the best,
Nanc

[moosey2me]

Originally Posted by AZ-Di

Moosey,
Please read my reply under RSD/Renee's post "How is everyone".
My hand limits the amount of typing I can do on here.

I did the Spinal cord stimulator trial. Is the neurostimulator the same thing?

Yes, I had to do the Psych. evaluation. That really got me too. I've never
had mental issues (I'm 54), dependable person etc.....

Yes it sounds like the same thing..Did it work for you?? what was the evaluation like???That scares me..I feel just because we have rsd,we are nutts..Not the case,but some people make me feel like I am..because they do not understand..Thank you

[moosey2me]

Originally Posted by Nanc

neuromodulation, neurostimulation, spinal cord stimulators, etc, they are all the same thing.

A psych evaluation is always required prior to getting stimulators implanted permanently, most insurance companies will not approve the procedure without one. Like chaos said, they want to make sure your expectations are realistic and they want to make sure you are not suicidal. They don't want to pay a $100,000 claim and then you off yourself.

I was not happy with my evaluation either. The dr doing the evaluation said I was depressed and she was "concerned" about my mental state...REALLY??? She drug out of me things from my childhood, bad things, that I have dealt with already and moved on from. At the point I saw her, I was very angry at the drs I had seen up to this point...like 12 drs in a year until I was correctly diagnosed and at that point treatment was not effective. My pain dr told me that she didn't know me, just go thru the additional appts she required so she will get to know me better and approve the evaluation. So, I went to a few more visits and she approved it. It ended up being fine.

So, don't worry about it, it is part of the process. Also, I need to add this - you need to be 100% comfortable with your dr before you allow him to implant a SCS in you. If you are not comfortable with him, find a new one!

All the best,
Nanc

Thanks a lot..I worry about them telling me that its not right to be hyper,and always being upbeat..I told my PM doctor,what is the since of being depressed..he said its not normal..well I feel I cry when I have to,and deal with every day pain as best as possible,because it gets worse if you feed into it..focus on other things to try to get the pain level down..I hear you about a different doctor.I am going to my primary to speak with him about this PM. doctor..See what he thinks..

[AZ-Di]

Moosey,
I did the trial for 5 days. My RSD/CRPS is in arm & hand so my P.M. Dr.
started in my lower back (less likely to spread) & the wires were threaded up to my neck area.
The next day I went back & the Company Rep. programmed it. He basically tried several programs that targeted slightly different areas with slightly different
sensations. I went to P.T. 3 times while it was in trying to gain range of motion. It was inconvenient because you can't shower, bend, stretch, lift or twist. For me, it did not help the pain any better than anything else, but there are others for whom it is a lifesaver. Since the benefit did not outweigh the risk
I did not get the permanent one.

[moosey2me]

Originally Posted by AZ-Di

Moosey,
I did the trial for 5 days. My RSD/CRPS is in arm & hand so my P.M. Dr.
started in my lower back (less likely to spread) & the wires were threaded up to my neck area.
The next day I went back & the Company Rep. programmed it. He basically tried several programs that targeted slightly different areas with slightly different
sensations. I went to P.T. 3 times while it was in trying to gain range of motion. It was inconvenient because you can't shower, bend, stretch, lift or twist. For me, it did not help the pain any better than anything else, but there are others for whom it is a lifesaver. Since the benefit did not outweigh the risk
I did not get the permanent one.

sorry that it did not work out..do you take more meds..? some work for awhile,then they do not

[Lottie]

No one has the right to tell you how to feel. Find a better doctor. You deserve nothing but the best.

[zookester]

Originally Posted by moosey2me

I am hoping to get some insight on the neurostimulator...I first have to go to a therapist..what do I need to know about going there?why is that needed?My doctor did not tell me that..Is it because they want to make sure we are not crazy?????The pain is what drives us crazy!!!!I have been going through a lot lately,a dear relative past away,so I just been away ..trying to take it all in..so,anyway if anyone can help me out with everything that would be great..I get really nervous..Oh ..listen to this my doctor does not understand why I am hyper..I said its because I try my best to be happy..I swear he wants me to cry... ,and feeling sorry for my-self ,,it is a waste of time..I am not sure what this doctor wants..one time I went and was in a lot of pain..he said what do you want me to do??What did you do different!!!!I swear who's the doctor..me or him....

Hi Moosey2me,

lol.. they aren't trying to determine if you are crazy.. this is typically required by the insurance company. It is another way to ensure that you have been informed and understand the goals of therapy/treatment. It is also to ensure that if the pain you are enduring is causing lack of sleep, emotional and mental disturbances that those and other areas are addressed through medication or other modes of therapy so that you gain the most benefit from the SCS. For example if you aren't sleeping well (like most of us) and also suffer with any level of depression (as expected when in chronic pain) then something like amitriptyline could be recommended or increased if you are already taking it or something similar. The reason for this is that if you aren't sleeping well then you won't be able to cope as well with pain so they are trying to help you with things that the SCS won't help with. Try to look at it more like a check and balance instead of in a scrutinizing way. They also want to ensure you understand that this device will not relieve you of all your pain. The goal is generally a 50% reduction from your average daily pain. They should also explain that if you have multiple symptoms (ie., burning, sensitivity, swelling, knife like/lancinating & electrical pain) that it may only help with one or two of these symptoms not all of them. They might also explain that you will get the most relief out of it early on and like with medications the effectiveness tapers off over time. Reprogramming it or changing the herts/amplitude on it regularly helps keep it working more effectively. They explained to me that turning it off here and there also increases its effectiveness and believe it or not shows you very quickly how well it is actually working.

Another thing they went over with me was how it might feel very strange to have a foreign object in your body at first. I didn't understand what they meant until after my permanent one was placed and then "I got it" .. to hard to explain but it was a strange feeling in the beginning.

Like with any procedure there are risks with infection etc., so they will go over that in more detail as well (or they should).

My personal experience with the SCS: I am thankful for it each and every day! I've had mine in since July of this past year and without it I can barely walk. With it I can walk with a much less severe limp. When pain ramps up throughout the day I turn up my stim.. and believe me it helps. Does it take all my pain away? NO and yes it was more effective in the beginning than it is today. I would say generally I get about a 20% pain reduction and even less at times, but in comparison to the pain I am in when it is off or where I was without it that relief is immeasurable! It helps much more in the areas of spread rather than in the original site of onset. Honestly, I didn't realize how bad my opposite leg was until one day I had to turn the device off for a couple of hours.. I was shocked at how much the stim was covering the pain in that leg. I don't recall where your CRPS is located, but something you might discuss with your doctor is placing the additional wires and programming so that if you do get spread to the opposite limb (which is common) that you have the ability to adjust your stim accordingly.

One thing I have noticed about the SCS and CRPS is that it seems to perform better for those affected in their legs rather than arms. Just a personal observation of course. I remember reading somewhere that it is more difficult to place the wires precisely in the thoracic region but, that is all I remember.

My recovery was a breeze after the permanent was placed. I only had a slight issue with swelling that caused for a little closer monitoring for infection but it healed without issue. The draw backs for me are that I can feel the battery that is placed in my upper buttock and causes discomfort in certain chairs or clothing press on wrong. My leads are visible as well mostly that is annoying for my husband (lol) and not really a both for me. I am very small framed so that might not be an issue for some. I also hate having to tote around the remote and charger.. I never carried a purse much so this has been an adjustment for me.

I actually keep it buzzing away 24/7 and only turn it off while I'm charging myself..lol.. Oh.. and the permanent was much, much better compared to the trial. Adjusting the stimulation takes some time, something I don't feel can be done during the trial phase.

I really hope this helps - feel free to ask any questions and I hope if you decide to go forward with it, that it helps you in a positive way.

Best wishes,
Tessa