Spinal Cord Stimulator/ Epidural Catheter(Tunneled) anyone?
 

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 :)

I am waiting now on my approval for my scs, from WC. They suprised me and approved a series of 3 spinal blocks, which did not work. I have been trying to find as much info on the scs as possible, I have been in such agony and have had no relief from meds, blocks and feel the scs is a hopeful prospect. Any thoughts?

Please get a second opinion you are way to young for this you need to try some other things.

I have 2 scs and love them
 

I have 2 scs implants (one for lower extremities, one for upper extremities) and love them both. Had them for 6 months now, and they provide a lot of comfort to my nerve pain. It really is true, though, that is NOT a cure, but a form of therapy. You will still have the same limitations on yourself and still get flare-ups. On the negative (for me) is that the 2 battery implants puts added pressure on my lower back. Overall, I'm happy with them :)

I was going to get both the tec and then possibly the scs. Both were ruled out for the time being since my pain increased from lidocaine infusion and block. Are you under care in at Cleveland Clinic as that seems to be the place who always suggests the tec? The thought for the TEC is that it wil enableyou to do extreme physical therapy which in turn is supposed to help your rsd limb to get mobile again and then in turn helps with pain. My fear is delayed pain so after the tec was to come out would I get delayed pain. There are usually steps before these 2 procedures such as the meds and blocks. Have you had those?Then would be a temp scs? I know a girl your age that after the tec,blocks,meds,and 2 previous temp scs she now has the perm scs and seems to be doing a lot better but then I know some who have had not good results. The problem with our condition is what may work for one may not for another. I also encourage if you have not seen more then one doc for pain that you get a nd opinion before you do a big procedure. If you or your mom even wants to email me I am here as I know how my mom felt so helpless and lost and talking to a girl who had rsd for awhile helped her.

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 am new to the boards and have never heard of the sps can someone tell me a little bit about it? Is it used for certain diseases or what?

Thanks,
Bleusz

Spinal Cord Stimulator
 

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!

please consult another dr. When i was 17 and this option was discussed my pain clinic doc informed me that he was uncomfortable doing this procedure in a woman of child bearing years. There is no studies to show what the scs could do to a fetus. If I had chosen to do the scs I'd of had to turn it of during any pregnancies. This alone should cause you to rethink this step. Its been 10 years and I have yet to have the surgery done. the invasiveness alone could possibly lead to RSD appearing in the area of implant/incision. This is all from my dr. who recommends the scs to many, because of the benefits he has seen with his own practice. I just think you are way to young to take this step now.

I've had 2 scs units implanted. the first lasst one year, then the leads moved and the battery that was in my butt turned around and was sticking out. It really made sitting down kinda hard. :eek::eek: you know there is a joke there. I've just finished the pain pump trial and Im getting the permant one implanted Jan 19th. I don't think, due to your age, that they would give it to you. THis is where the put a cathear into your spinal fluid, run tubing into your belly where it is connected to a resivoiur which holds your liquid meds. they go directly into the spinal fluid, so you need such small amounts. doesn't affect the rest of the body, but that would be something you have to discuss with your dr. Wishing you good luck with finding something that will help you on your journey.

Gentle Hugs
Mary

I've had my SCS implanted now for 15 months... Hardly ever use it as it makes my RSD really mad. I just keep it charged up. The trial went pretty well but my permentant implant has not prove to be such a positive. Think real hard about it before getting it.... as the leads up my spine and the box in my hip/butt area are somewhat uncomfortable.