HI,
Thanks for coming :]
I am getting my Spinal Cord Stimulator in next week and I wanted to know if anyone who's had it or knows of it could shed some light my way.

Also my doctor is debating on giving me an Epidural Catheter(Tunneled) too, so if you have any advice for me, I would love to hear it.

Since I am only 17 my mom is against both, so I am trying to convince her they are okay, but all I can find on the Catheter is that it gives most people an infection so...can anyone prove this wrong?

Thank you :]

did u have the trial scs first? i had the trial, it worked great, then when i had the perm it did not help at all. my pain spread- originally was fingers to elbow- after the implant the pain went to my neck. my back was constantly hurting from the lead, my hip always hurt where the battery was. i got shocked all the time... i had it reprogrammed several times and nothing helped. there are quite a few others i know that have had a lot of issues with theirs.... yet there are also those who have good results. i however wouldn't recommend it. i ended up turning it off after about 6 months, and removed a year later

Hope you can read this. I'm in the hospital just finishing my pain pump trial. I've also had 2scs. Like others the scs trail helped more then the perm. I had my oridinal for a year then because the b attery moved and the lead pulled out, they needed to replace the unit. they did and I develped an infection and they had to pull the 2nd unit out. I'm now finishing my 4 day pain pump trial. It hasn't been as easy as I thought. They started with morphine, which left me so so very sick. they stopped that and now they have put fuiluide in. it seems to be ok. I just don't know if I wnt the perm. my meds worked just as well, just did n't let e drive or anything. I'll be thinking hard about it the next week. I really think the pain pump works best of the two. I would n't get anything till I had the trial of both.

Hugs
Mary

Thank you so much, both of you.

17 is young, but it's good that you're asking for experiences from others...

A SCS is not a cure. It's one of many different types of treatment. It's an invasive procedure (back surgery). A SCS is not a magical device that will end all your problems. There are alternatives. I'd not do anything invasive until you've exhausted all other options. Let the doctors try medication and other treatments first. A SCS or pain pump is basically given when nothing else works.

I think your mom is right about being hesitant towards anything invasive at your age.

I got my spinal cord stimulator put in when i was 19. feel free to give me a call.. or email me. send me a private message and i will get you my information. i live in california, and tomorrow i am seeing my doctor actually about ketamine. I will talk to you and my mom can talk to your mom as well to make you f eel more comfortable. please call or email

Hi there, this recent study might help some.

"Spinal cord stimulation in adolescents with complex regional pain syndrome type I (CRPS-I)"

http://www.rsds.org/2/library/articl..._Linderoth.pdf

I hope you are doing well, please keep us updated.
hugs,
Sandra

I have had my SCS successfully installed for five years. SCS can be an effective tool in the management pain for RSD, particularly if it is installed within six months of the onset. A key determinant in the success of SCS is the experience and qualifications of the surgeon. Many Interventional Pain Management Specialists implement SCS's, but only a handful are expert SCS surgeons. I would recommend that you carefully research the experience of your surgeon specifically with SCS and RSD patients. When I had my SCS installed, I had been a patient by a leading Pain Managment Center who had a surgeon who implement SCS's, however, they recommended I seek an outside referral for my SCS due to the surgical requirements and the detailed follow-up care. In addition, there are key differences between the two SCS products, ANS and Medtronix. I would encourage you to research both products and determine the product that meets your current and future needs. You will find that most surgeons only work with a single product. For example, I have an ANS stimulator implemented with leads for all four extremities, although at the time of the surgery my RSD was present in only two extremities. Within 24 months, my RSD spread to a 3rd extremity and my SCS "turned on" automatically, having been already programmed to do so. ANS was the only vendor offering leads for all four extremities. This decision saved me from having to have a second SCS implemented when my disease spread. The other key factor I have not seen mentioned in other messages is the experience many RSD SCS patients experience that over time, the severity of their RSD is reduced, sometimes even going into remission. I have read at least one article on this subject. Given your young age, this could be particularly significant. The SCS trial, while cumbersome, will give you important information to help you determine the viability of SCS for your particular case. SCS is an exciting technology for the RSD patient when implemented by a highly qualified surgeon, having selected the optimum product for the patient. I encourage you to consult with multiple surgeons and to speak with RSD reference patients they provide who have the specific SCS's they are proposing. Best wishes to you!