Hi

I have so many questions regarding SCS....
Can someone help me???

I know everyone responses differently, but I am trying to get as much information as I can.

What is the trial like?

How long can a person have the trial until the permanent implant is done?

What happens if you find out after the permanent SCS is implanted that it isn't what you had expected, do they remove it?

Do the batteries go bad, do they leak? Do the leads pull or break?

Do you still need pain medication?

When going into stores do you have to turn off the SCS due to the alarm security system?

If you forget to turn off the SCS does it mess up the programming with it?

Are there any other options besides the SCS? (She has many problems with medications as well.)
Sorry for all questions....I am going to be asking my daughter's doctor all these and more as they pop into my head, I'd really like to hear from people who have or had the SCS.

Thanks for helping..
My daughter gave me her account information (she is not feeling good, she is quite ill with the rsd along with her other health problems) I'm logged into my her account, looking for all the help I can for her.
Thanks again

Summertime, I will answer as many questions of yours as I can from perspective & experience with my SCS okay? The trial is alot like having the implant done but the generator is outside the body not implanted. It gives you a very good idea if the system will or will not work for you. I had the trial for 5 days & then three weeks later had the permanent implant done. As far as I know they can remove the SCS after the permanent implant if you cant stand it or its not working for you. But you should know after the trial. I have a rechargable battery & shouldnt have to replace my battery for nine years. I have never heard of any leakage problems. I have had one revision surgery because I yanked the leads out of the generator but it was a rare case they had never seen before but my dog jerked me VERY hard going after the mail lady. I still take pain medication. I do not turn my SCS off when going in stores & have never had my programming messed up or set off nay alarms. You do have to have a special card that they give you to get on airplanes. I dont know what other options you mean besides the SCS? Theres a pain pump thats does intrevenous (sp?) meds. There are Alpha STims & Tens Units that are outside the body. I dont know what other options you are looking for. I hope that helps. If you have more questions send me a private message please & I will answer anything you have to ask. I dont want to miss any questions you have here.
Denny

Hello,

During the trial the generator is outside the body. It is secured with a very tight wrap or at least mine was. Ask the doctor if he has a video for you to watch the representative from the mfg. of the SCS should be on hand for the veiwing to answer any questions.If you decide to have it done it is normaly implanted after a week long trial. You can still go through alarm systems. She will have a remote that will turn the SCS on and off and it will also control the strength of the stimulation.
I think the generator (battery) last for 7 to 10 years. She will have an external charger that she will use to recharge the SCS. A message comes up on the remote that will tell her when to charge. She won't forget and leave it on she will know when it is on. Mine was very sensative to posture my leads were the length of my spine. When I turned my head I turned up the stimulation when I sat down it turned the stimulation very low. I was told not drive while mine was one. I continued to use medication with mine. Keep in mind we are all different. My RSD is full body the SCS was in my opinion not designed to handle stimulation for both arms, legs and low back. After having it for 3 years I had it removed last November. Once it is implanted you can not have an MRI if needed.
I know all this can get confusing. There are web sites that talk abou SCS. I know Boston Scientific and Med Tronics are two companies that make them.
I wish you and your daughter the best of luck and I hope you fine the relief that works for her.
Take care,
Sherrie

Hi Summertime,

I would be happy to talk to you about my experience with the SCS. I had mine implanted in Nov of 08. If you want to PM me, I would be happy to call you long distance. I am willing to do this because I wish I had somebody to talk to about it.

Hi

It's me summertime, my mom was trying to help with the post. Thanks for replying.
I feel very alone in this mess and I know I'm not, we are all in this together throughout the world suffering some of us suffering in silence because either people don't believe us or we do not know what is going on with our body.

RSD is most definitely confusing. At least we have places to share our stories. As much as my family tries to understand they really don't understand because they are not in my body. I'm terrified of the medications, I am angry with the doctors for what they did to me.

I need to adjust and accept this is how life is for me now....but how do I adjust?? how do accept this??

I've been crying so much lately because of pain, realizing that this is my life now and no one has much to offer besides pain medication and now the SCS trial........I hear and read more bad than good on the SCS.

I don't know what to do anymore...

Summertime,

You are not alone.

I sent you an e-mail with my phone number. I will give you my experience with the SCS and what you can probably expect.

Please call.

Summertime, I am so sorry, I wish I had answers for you. Some days I think I have accepted this & days like today when I am hurting really bad I realize I have not. I wish there was just some magic answer to help you. I wish I could give you a hug at least while you cried so you felt less alone. Thats one of the hardest things. The lonliness. I have never met anyone face to face that has RSD. That would mean so much to me as I am sure it would to you. Just to be able to sit & talk to someone who undertsnds what you are going through. I can say one good thing about you trying the SCS is that you can do the trial and not just jump into it. It will really help you decide if you like it or not. Please feel free to PM me if you want to ask me more questions. I have mine cervically (in my neck). I dont know where yours will be. SO they may be a little different. But I can still answer questions. I also have the rechargable model & I will tell you I think its worth it. My battery should last about 9 years versus the 5 years of a non-rechargable. I have the Medtronics brand SCS. I really like their Customer service & my Rep. I hope you feel better soon sweets! I am sure we are all here if you need us!
Hugs, Denny