Hi, I am new to the forum and was wondering if there was anyone who could advise me? I am due to have a trial spinal cord stimulator this summer. I have had nerve damage and CRPS in my left foot for eighteen years now and have tried numerous treatments but to no avail. I'm currently on a mixture of morphine, ketamine and zopiclone to name a few!
I was just wondering if anyone has had the trial or even the full operation and could tell me how they found it, did it work? What does it feel like? I would be really grateful if anyone could help
Thanks, Rachel

Look under SCS & Pain Pumps on the far right side of the pages. In this area to the left you will fine questions people are asking. Just go at the top and hit todays Post then scroll down the right and you should fine what you are looking for. There are hundreds of post on what you are looking for.

Good Luck and Welcome.

Hi Rachel
Welcome to our lovely little family and I am sure we will be able to answer any questions you may have. I have had RSD for 3 years but was only diagnosed last september. I had the scs installed in december but mine is a little different to the normal one so I will let the others talk about the standard scs trials and full operations. For me I suffered at the time from severe back pain and left leg pain my scs really controls my back pain but at the moment i am not doing great as the rsd has spread to my other leg and at the moment i am just waiting to see my doctor but we have discussed getting a second scs to help my legs. I am also on ketamine and i take tradol and a few others!! I know the rest of our scs gang will be on and they can help with any questions you may have. I am still glad despite the rsd spread that i have my scs and it does a great job. You could read Saffy's posts as she only had her scs done a few weeks ago and she even has pictures . Getting an SCS was a last resort for me and after 18 years of pain I can only imagine your very fed up. I think the trial is a great idea because you can see if it helps before you sign up for the full implant.

Take care and i am sure we will chat soon. J

Hi there, thanks very much for your reply, I will check out Saffy's comments and have a look around the site. Really sorry that it has spread with you, It must be terrible. In some respects I guess i'm lucky as so far it has just stuck to my left foot. It's been a very long time though and it's nice to finally talk to someone with the same condition. Up until now I have not met or talked to anyone with CRPS/RSD so it's been great finding this website.
Thanks again and wish you all the best

It is so good you have found our dynamic forum area. So many people do come in here and share much, learning more, venturing forth..... I hope that as you approach your trial you will find answers to your questions, and if more need be asked that you will get on that keyboard and let them fly. It is good that you and Jenna have hooked up as it appears you are both reacting to similar situations and may be of much help to one another! She is a very sweet and caring person who has shown GREAT strength as she has pressed on in every aspect of discovery, learning, treatment, more contemplation, thoughts of additional treatment, all the while raising beautiful little daughters, making a trip half way around the globe to visit her sister for a birthday AFTER surgery. Jenna is a WOW inspiration to all of us.

If there is anything I may do to be of help, you need only ask. I have written a good deal, and much of the process through which I have come is chronicled here http://neurotalk.psychcentral.com/thread117854.html although our paths may differ, I have found the SCS treatment to be a generally positive experience and I feel blessed to have it.

Again, welcome, and ask away,
Mark56

Hi Rachel .. glad you've found us.

I had my stim fitted on the 20th (had the trial on the 18th) .. am finding it a bit hard at the moment but Lord knows why. I guess we're all individuals.

Am glad I went ahead with it, whatever happens in the future, because if I hadn't I would always have been asking .. "what if?"

xxx

Hi Mark,
Thanks so much for your reply, it's great to find people going through simular things (even though of course I wish none of us had these problems!)

You have been through so much I really hope things improve for you every day.

I have started to read through the thread you stated above, it's great - lots of information. I will continue to read through it.
It's interesting you mentioned a Interferential stimulator, when I saw my surgeon 2 weeks ago he suggested that they may give me something that sounds very much like you described until I have the operation. I had a tens machine for a year or so when I was about 16, is it simular to a tens machine?

Have you had to have your SCS replaced? How long do the batteries last in them (or is that the same as asking how long is a piece of string! )

I'm looking forward to the trial in many respects as I am so exhausted being in pain, as I know you all totally understand. I'm 33 this year and have been in constant pain for the past 18 years and even though I knew I had chronic pain for nerve damage, I only got diagnosed with CRPS 2 years ago.

As I mentioned I will keep reading through your threads, thanks very much for your time, really appreciate it!
Thanks
Rachel

Thanks very much! I actually found the SCS & Pain Pumps area last night. I will have a look through as you suggested, thanks for your time

Glad to have you at Neuro Talk. I just wanted to say hello. You already found the forum that will help you with your questions. You will not only find answers, but some compassionate people as well. I am sorry you have to investigate the SCS pump, but it is so much better dealing with a problem when you know all the facts. I wish you all the best. Feel free to enter into dicussion with anyone on the forums. ginnie

OOOoooo I'm anxious to hear how you are doing. You'll be tender and sore no doubt, and they may or may not turn your unit on yet.
Be gentle on yourself and allow others to pamper you. The surgical pain will lessen soon.

You've been in my prayers as well.....
Oh, I wasn't able to find the beautiful arrangement Mark describes, but here's one that happens to be the state flower where i live.
................................
Caring Always,
Rae