James,

I do know, even in the case of PN that SCS wil not stop progression. Before my trial SCS, my Pain Specialist, when asked, did inform me the SCS will not stop progression; but would help with the pain. My trial was unsuccesful so I did not go ahead with the implant. I had hoped SCS would stop progression and would have done another trial if it was possible to stop progression.

I am glad to hear you are doing better. Your sentence was a bit incomplete. Did you say you are "off" all narcotics??

I do not know what tDCS stands for. I would appreciate any info you can give me.

(Ger)

I have CRPS in my arm as well and I have done every option out there....including about 12 different drugs. I have had the injection and it did absolutly nothing for me. It is very frustrating. The sps is the next option for me. I am hesitant to do it but as the doc told me it really isn't doing anything but blocking out the crossed nerve signals. My arm already has crossed and messed up nerves. I would however stay away from the Cymbalta....this was the cause of my CRPS.

Sorry you have PN. I have heard that the symptoms are similar to CRPS. Do you also have CRPS?

Yes I am off all narcotics now. (was no picnic getting there) The mental clarity alone was worth the journey. Since I had been on narcotics for so long I now know that they were only adding to my pain. Wish I had dumped them long ago but I convinced myself that I could not function without them. One of the problems was that a psychiatrist, who I really liked and trusted, kept adding meds over time which caused brain fog. Got rid of the shrink and the narcotics at the same time. Don't need either now. Looking back I wonder if I ever did need either of them.

There is a tDCS (transcranial direct current stimulation) thread containing lots of info and resources. It is where I first learned of the treatment. I recommend reviewing it. tDCS is a treatment for various forms of chronic pain. It might be worth giving it a shot for PN.

Whatever path you choose I hope you find some relief.

Additionally, if you have CRPS consider it good fortune that you did not have a successful trial. With CRPS a Spinal Cord Stimulator is a ticking time bomb.

James
 

Thanks for the info. I am under the care of a Pain Specialist for the past few years. I do not believe I have CRPS. A little more than 5 years ago,I had spine fusion/laminectomy and a badly crushed nerve. Eventually the pain spread from waist to toes. I am on a lot of narcotics. 240 mg's total daily Oxycontin and Percocet for breakthru. Eventually, the constipation led to bladder and rectal surgeries a few years ago. (My Pain Specialist wants me to do another trial.....Not!!!)

Not sure where a tDCS could help since it seems like only one area is treated. I will have to look into this further.

I often have wondered how much my pain is from narcotics and how much is the real pain. Mark56, one of our posters, went thru the withdrawal of all his meds. Not sure I could handle this. Even when a little late taking the 60Mg's Oxycontin every 6 hrs, I experience some withdrawal. The legs are like lifting lead weights and quite painful.

Hope things keep working for you and bring you relief. All this chronic pain is really awful.
(Ger)

I am a nurse who developed CRPS in my left arm and hand in 2008. I slamed my hand in the door at work. Since my injury I have been in constant severe pain with no relief. I have endured painful nerve blocks and surgury that made the pain worse, I have taken cymbalta, gabapentin, lyrica, and use every pain patch there is with no success. I have tried narcotics and found out that Im allergic to all that Ive tried which include hydrocodone, methadone and percocet. I was once a happy outgoing person who enjoyed traveling with my family and enjoyed life and always lived it to the fullest, until I developed depression. My depression has gotten so bad that I tried ECT because no med would help me and the doctors and phychiatrist guaranteed this would help. Well, it was horrible after just one treatment I started having having the worst headache imagined and decided not to continue with the treatments. So now my depression is so bad that Im pettrified to leave my house and when I do I have panic attacks so severe that I feel like Im dying, with the constant pain and depression I had contimplated suicide as my only relief. Now my doctor has told me that my best option is to have a SCS implanted, well after the ECT fiasco I am alittle scared, I dont know what I should do. I would your opinion withis matter if possible, all I want is my life back.!

Hi J! I am so sorry for what you are dealing with. Everyone is different in their symptoms and treatments. I have had RSD for 21 years, which started in the right side of my face. I was in remission for quite a while. In 2009, I hurt my hand and now, in addition to my face, I have it in both hands, left arm, left leg and right foot. I am allergic to pretty much everything! I had successful stellate ganglion blocks when first diagnosed, which put me in remission, so I wanted to try them again. They were unsuccessful because I was too far gone. My dr also tried many other types of blocks with no success. He was the second dr to suggest the SCS. I was terrified! The good thing is that you can try it out to see if it will help before having the permanent placed. I had two implanted in June 2011 - one cervical and one thoracic. I am so happy that I did this. I had to have the leads changed out in the thoracic one in November 2011, so it is much better with coverage. Now, I am not out of pain because it does not reach my foot completely and it doesn't help my face at all (would need leads there to help), but my pain is greatly reduced. This gave me the use of my hands back! This helped me continue to work! Some days it feels like I am only getting 50% relief...to me 50% is huge with the level of pain I have without it.
You have to decide what is best for you and do your research. Also, if you decide to move forward with this, you need to be 100% comfortable with your dr. Many will chime in telling you to avoid it, it causes spread, it is not proven to help RSD/CRPS, etc. But there are also many success stories on here too. Mine didn't cause spread, mine helped me greatly.
You came to the right place! Also check out the SCS & Pain Pumps board (if you haven't already).
Wishing you the best,
Nanc
:hug:

Have you tried a TENS unit? Maybe that would help.