[ShelbyG]

Hi everyone! I am so grateful to have found this site and am hoping to get some insight from all of you. My name is Shelby, I am 38, a newly-married mother of two who has had RSD/CRPS for 8-9 years from a work-related carpal tunnel surgery.
It has never been determined whether it was from the surgery itself or the fact that my cast was put on way too tight and I lost all sensation in my hand/arm for the two weeks it was left on. But I digress.
I am very interested in reading and hearing about others' responses to SCS. I have been battling this disease for 8-9 years (9 years but it took a full year to get a diagnosis). In the past, I have been on multiple medications and managed to live through the pain as I have a child with special needs and when I had a severe flare up I'd have a stellate ganglion block and then radiofrequency ablasion a month later.

On Nov. 27, I had another flare up - it seems that each flare gets worse and the recovery time longer. Because this is a work comp issue - I won the case and have lifetime medical coverage - I have to go to an occupational health doctor who then refers me to a pain doctor who is in town only two days a week. Because of the whole work comp issues, there are times it takes weeks for me to get approval to go to the pain doctor, and then additional weeks to get in. I also have never been able to just go to the pharmacy and have my meds covered - the last time, I was so bent over in pain that the pharmacist gave me my meds to get me through the weekend because he has been dealing with this for years with them.

My insurance card says "paid without prejudice" on it but they literally never pay. I usually end up paying for the pain meds and wait the week for my lawyer to get them to cover the meds. Because of this and because I am newly married, I went to a new pain clinic that opened in town and used my new insurance that wasn't aware this was a WC issue.
That doctor is absolutely wonderful, has been a lifesaver, has gotten my meds at a reasonable level and amount - there are times I can't form a sentence or remember things because I am so loopy. This doctor performed my block for me the day after my initial visit - without insurance approval - because I was in so much pain. He recommended trying the SCS to see what it would do for me. He actually called my insurance adjuster and got the procedure covered and I have an attorney involved who couldn't do that.

I have tried everything - ot/pt, acupuncture, hypnotherapy, blocks, gloves, wraps, and literally 50 different meds. I had been taking 13 different types of drugs up until two weeks ago and am now down to 8. My trial was last week and it worked amazingly well for me. I was able to hold a pen in my hand - I know that doesn't sound like much - but for me a pen is like a 100 pound weight. I have been able to slightly open my hand from the "claw" position, go for a walk with my husband, laugh with my son and play with my dogs for the first time in a month while I had the trial.
Granted, the last day my wire pulled out and I had some issues with that but I was warned that it was basically floating around in there and this could happen. I went from taking 8-10 pain pills a day to 2-3 and one day only took 1. That is huge for me! I was literally in tears on Tuesday when I had the trial removed. My doctor just received his hospital priveleges and is going to put in the permanent SCS on the 16th.
I am very nervous after reading some of the posts that the trial worked so well and then there were so many issues afterwards. I honestly don't know what else to do or what to try if I don't try this. Are there others out there who have had success with the SCS? I realize and expect that there will probably be some issues but literally my life is at a standstill.

I couldn't have my wedding band put on my left hand, I can't tie my shoes, button my pants, snap my bra, get a manicure, cut my food, nothing and I felt like this was a step in the right direction and with the reduction in my pain level I could maybe begin pt again and try to rebuild some strength back into my hand. Any advice anyone has to offer would be greatly appreciated.
I believe in my heart this is the best step for me but I also had not read any of the issues some of you have had, and I don't know how much more of this I can take.

[Clinton6]

Hi Shelby, I'm so glad you found this site !! I also ave CRPS in my arms and hands, from having a Ganglion Cyst removed and a Carpal Tunnel Release on Dec. 18 2009. I love being able to come to this site and know that everyone here knows how I feel and can understand completely what I'm going thru. I don't have a SCS . I'm on pill relief only right now so I'm not able to totally relate with what's all going on with you.......I'm a 34 yr old Stay at Home Mom of four girls ( 13,11,9,4 ) . I wish you all the best and will keep you in my daily thoughts. Corey

[Mark56]

You are in the right neck of the woods to have folk come pouring out to shore up your support. We do it well here from many perspectives. Rae, once she sees your brave new thread, will post with links to RSD/CRPS areas within this growing worldwide place of sharing and with hope managing pain.

I am an SCS implantee who has found extremely good success from the whole of the effort, so much so I withdrew from all pain management meds and now find myself involved in gainful employment once again within my profession!! How excited I am! I have a thread hereabouts which details my path to electronic pain management, and I hope you might give it a read. I will gladly answer ANY questions you have, well except dealing with underwear since I am otherwise gendered , and we'll see whether there is some help you may gain from being among us!

A hearty welcome,
mark56

[Nanc]

Hi again ShelbyG -

Glad you posted over here. Mark56 and Rrae can offer great insight to SCS! They sure have helped me here

Nanc

[yellow]

Hi Shelby, I'm glad you found this forum- you'll find lots of help and support here! I'm so happy for you that your trial went well. And I completely understand the joy of being able to do the small things that you weren't able to do before. Your surgery date is coming up soon which is great that you don't have to wait much longer. I hope that you'll find as much success with it as you did with your trial!

Before my implant surgery I also read a ton of other people's stories all over the internet. I, too, was scared by the failures. It can really psych you out if you let it. But there are lots of people who have it in and have it work really well too. So I went in with a positive mindset and put all of the bad stories in the back of my mind. Try not to let the stories of others' failures get to you. It comes down to you deciding that an SCS is worth the possible risks for the potential relief you'll receive, and if you decide you believe that, it should be easier

[ballerina]

Hi Shelby,

Have you tried tDCS? I just posted an update on my treatment on the RSD forum. Hope this helps!

[Nanc]

Originally Posted by yellow

Hi Shelby, I'm glad you found this forum- you'll find lots of help and support here! I'm so happy for you that your trial went well. And I completely understand the joy of being able to do the small things that you weren't able to do before. Your surgery date is coming up soon which is great that you don't have to wait much longer. I hope that you'll find as much success with it as you did with your trial!

Before my implant surgery I also read a ton of other people's stories all over the internet. I, too, was scared by the failures. It can really psych you out if you let it. But there are lots of people who have it in and have it work really well too. So I went in with a positive mindset and put all of the bad stories in the back of my mind. Try not to let the stories of others' failures get to you. It comes down to you deciding that an SCS is worth the possible risks for the potential relief you'll receive, and if you decide you believe that, it should be easier

Well said Yellow!!

[Mark56]

I was thinking well said one and ALL! You ALL prove our process and raison d'etre here in the ether supporting one another. Warms the heart it does.... yes it does.

Be well,
Mark56

[Rrae]

Welcome to the crew!
I'm so sorry to see that you've been suffering with this for 9 yrs! I've been at it for 7. If it weren't for this place, I honestly don't know where I'd be by now. Everyone here and over on the RSD forum are wonderful, caring and very understanding.
Thank you for sharing your story. You do indeed seem very brave and determined to get out from under this pain so you can have a better quality of life with your precious children and new husband!

I'm excited for you! If your trial went that well, then it's pretty much a sure thing. You know what to expect by now and you don't have to feel like a 'newb' anymore. Just connect with your medical team (and family!) and when the day gets here, you'll have a good communication going with the Dr and Rep in the OR. That's 'KEY'. Try not to tense up....just relax into it and communicate well when it's time to turn on the BUZZ.
I have a very good feeling about this.
Sure there are alot of things that might not go perfectly, but like Yellow said, focus on what you intend to achieve.

There does seem to be quite a bit of concern regarding the RSD spreading....but you've had this going on for along time now and you know your body well.

Read thru the different testimonials and you'll pick up lots of hints and suggestions along the way. Ask anything you want. We'll be with you all the way, and anxious for the outcome.

It's great to have you here, Shelby!
You've got friends!!

Rae

[Rrae]

Originally Posted by Clinton6

Hi Shelby, I'm so glad you found this site !! I also ave CRPS in my arms and hands, from having a Ganglion Cyst removed and a Carpal Tunnel Release on Dec. 18 2009. I love being able to come to this site and know that everyone here knows how I feel and can understand completely what I'm going thru. I don't have a SCS . I'm on pill relief only right now so I'm not able to totally relate with what's all going on with you.......I'm a 34 yr old Stay at Home Mom of four girls ( 13,11,9,4 ) . I wish you all the best and will keep you in my daily thoughts. Corey

I just wanted to give you a shout! Thanks for your encouraging words!
I'm so sorry that you too battle this @#$%& CRPS. None of us asked for this, that's for sure. The good thing about it, tho, is that we've all hooked up like a big family who can empathize well with one another. Before I found NT, I was completely alone in this and started to suspect I was going crazy or something. It was hard enough trying to get others (even doctors! ) to understand what this pain is like, but now I've grown more familiar with what we are facing and I do my best to get by with the means available to me and my supportive friends right here.

I hope your medication regime is working ok for you so you can enjoy those precious girls of yours!

Rae