[zorro1]

This very interesting thread is over at the SCS and Pain pump section. Has anyone here tried the SCS?

http://neurotalk.psychcentral.com/thread138100.html

[ger715]

I had done a trial stimulator last year. I have had spinal fusion (rods & screws) almost 5 years ago. Not sure is that had anything to do with the failure of the trial; but stimulation never reached below my knees. My worst burning pain was in my feet and ankles.
There has been instances reported from some of the people that had a successful trial; but when the permanent stimulator was implanted, they were unable to achieve the same results in spite of reprogrammings of the stimulator. This had been due to scare tissue forming around the leads which eventually moved the leads from their previous position.
There have been success stories as well. It is a fact though that scar tissue will form around the leads and hopefully they do not move from the original intended area.

[daniella]

I just posted about this on the other thread here. I know a few people who have done the scs and researched since I was suggested it. I think one has to be very careful when doing this. Yes it can help but it can also hurt. Some people have pain in the area of placement,leads move,etc. My pain doctor was actually fearful it would make my area of RSD and neuropathy worse pain. I do know someone though who it gave her back her life. So frustrating cause what works for one person does not for another and a lot of procedures/treatments it is taking a chance.

[ger715]

My Pain Specialist wants me to try another trial since all he has left are the pain meds to offer. I found the trial quite uncomfortable and the thought of having the battery, leads, etc. implanted turns me off anymore.
My doctor does not feel the rods & screws were the problem. I have been in touch with another person with PN that said he was told the same thing; but when he went in for the actural implant, the surgeon told him he felt the rods & screws would interfer with the stimulation going down to the feet. You can't help but wonder about the doctor doing the trial's share in the SCS. My Pain Specialist (who did the trial; but would not be doing the permanent implant), along with the rep tried in the operating room for quite some time to get the trial to go to areas it should have. Eventually, I think I just wanted it over and thought maybe they had gotten close. The rep tried reprograming for over an hour after I got dressed before going home. The rep was very friendly and said to call over the weekend if I needed any help. I did call. He set up an appointment at my doctors office the following Monday and worked with reprograming for quite some time. He left the room and then my doctor showed up telling me they were going to remove the trial since it had not been working. This nice friendly rep never came in to even say "goodbye". He had lost a sale. Also, a friend of my son's father had an implant and the lead broke about a month later. I spoke with him by phone, he said the second time was the most painful because the scar tissue had alredy started around the leads and needed to be removed. Eventually, he even had the second permenant removed. I have not seen Implants being recommended very often for PN patients. I also have heard of a few good results. Also have heard some months later the SCS is not working the way it had been. (scar tissue?). This is something to be give a lot of thought and research before having it done. Check what type of problem did the person have before the implant. I believe there are some instances that are good; not so sure for PN'

[JoanB]

Yes, I'm participating in that thread too because a doc suggested the SCS route for me, and I'm trying to learn all I can about it before I even consider the temporary trial procedure. The reason I'm even thinking about it is because nothing else has helped. It sounds really scary, but so does being in this much pain for the next 20 years, or however many I have left on this earth. It's tough to know what to do.

[ger715]

It is a difficult decision to make. My Pain Specialist Doctor kept after me to try this. For me, it didn't touch anywhere below the knees. I am not sure how well this works for PN since there is so little mentioned as a recommendation for PN.
The trial was more than I anticipated; but the rods & screws may have made getting the leads in the right area more dificult. My doctor still wants me to give it another try; but even if the trial was to help; my concern now is whether the implant surgery might add to what is already almost unbearable 24/7 pain.

[daniella]

I thought some doctors can place the battery in a different place if they feel it may be uncomfortable to the patient. I am not sure about the leads and other items though. I am confused on why the same doctor would not do the temp and perm. I would try to find one that does both. I know there are 2 companies who do this? Maybe more but I know I watched 2 videos. Good luck with what you choose but I hope you get relief

[zorro1]

SCS is recommended by dr Wise Young

http://sci.rutgers.edu/forum/showthr...alcohol&page=2


"For temporary relief of the neuropathic pain that he is having, he should consider low-dose amitryptyline (Elavil 20 mg/day). If this is not effective, he should try gabapentin (Neurontin). Note that most people tend ot accomodate to gabapentin and higher doses may be necessary but hopefully the pain will subside.

Another treatment that Nick may want to consider if the drugs don't work is electrical stimulation (usually with electrodes placed over the spinal cord). "

[ger715]

Many of the surgeons do not do the trial. After the trial is done by usually a Pain Specialist(many were at one time anaestheologist) you are given a list of possible surgeons that do the permanent implant. I had called one of them on the list to see if I could have both done by the same doctor. Was told they do not do the trial; only permanent implant after a successful trial. I would imagine you could eventually find one doing both

. Since I do not want to leave this doctor, I would not go over him either. Without the meds I am prescribed; not sure how I would get thru the day.

[Leesa]

Hi ~ I had the SCS implanted for 6 months -- I had hoped that it would solve alot of my pain problems -- but unfortunately it didn't. Then, after having it in for months, the darn thing tried to work itself OUT of me!!! The docs said I didn't have enough "fat" content in my body to hold it in!!! UGH. So I had to have it removed. Removal is MUCH worse than implantation!!

If you try it, I hope you have good results! God bless. Hugs, Lee