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

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

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

Hi Saffy,

Thanks for the reply! What are you able to do or not do after the surgery, have they given you any idea on how long you will take to heal etc?

Really hope it works out for you and I'm sorry you are finding it hard
Thinking of you!

Dear Rachel- We will all be with you through all of this, OK? That is what this forum is all about! Our subforum founder Rrae will be back from her hiatus soon we hope, and when you meet her, you are gonna feel like, WOW with her depth of knowledge, humor, and best of all...... her zowie smilies and such. I mean it is like she is super smilie knowledgeable so we get more than the stock standard .

Now, about the Interferential Stimulator... I was issued that creature as a stop gap, much as you probably have been... the notion was to see whether electrical stim was "apparently" helpful to me. The product came with mere basic programs and would only run for about 20 minutes at a time before needing to be restarted. The battery was only good for about four uses, so I would recharge it daily since I used it every day. The tech who issued it to me told me it was like having a TENS unit on steroids and wow was he right. It did help me..... but it was also annoying. The unit was, applied topically, of course similar to a TENS. The sloppy sticky electrode patches had to be applied to the skin. The electrodes were connected to the base unit via wires which ran out the waist of whatever I was wearing and I usually carried the base unit in my pants pocket, about the size of a large scientific calculator. One drawback was that the wires would catch on anything handy: drawer handles, hooky doos here and there, racks in stores, the seat belt buckle in the car, and every yank would kinda TURN me around. Yanking had its risk of pulling the wires loose from the electrode patches, and when a wire comes free from the patch you are in for a ZAP. Not fun. BUT, I used that gizmo until I was on my way to Trial for stim for sure, and then between the Trial and permanent stim implant surgery. It did help in addition to the meds.

My stim is a Boston Scientific Precision Plus SCS package and was implanted June 30 last year. We are just approaching my first year anniversary with my product, and I have used it constantly 24/7 since first programmed two weeks after my stim implant. As a matter of fact we will probably have a virtual party on NT here on the 30th to celebrate the first birthday of my stim, affectionately named PJ by our cohorts on here, because I am a person with a LOT of faith, so folks thought Praise Jesus seemed to fit me. PJ for short.

I did the programming of my unit myself under the direction of my company rep/tech who sat me in front of a computer two weeks after surgery [after the surgery pain had abated pretty much] and he had me "play" with a variety of settings since my experience with the stime is SO SUBJECTIVE. I knew what felt good and what felt awful. He and I worked together to set four programs in my unit which is accessed via wireless remote, AND here is the best part..... I attribute it to the fact that I set the programs up personally [no one else has written of this experience] - I have YET to require a tweak session with my stim rep. These programs I have are doing the trick for me, and I am well on my way via networking to rejoin my profession. I really want to get back into practice. All I use is my stim and my trusty cushion..... no breakthrough meds. There are times when I have pain spikes, but I turn up the signal on my device so as to overcome the pain completely and keep on keepin on. This is for me a miracle, a blessing, and a gift from God, talented product designers, and gifted physicians.

My recharging of the battery is transdermal and my base computer implanted resides in my right hip area just below the waist. Once the surgical pain healed, I noticed irritation for several weeks thereafter at the implant site until I became accustomed to it, and wore sweats and loose fitting basketball type shorts to feel sorta comfortable until that irritability went away. Now I can touch it and feel no ill effect. I wear my normal wardrobe. Voila'!

Oh, back to recharging. The recharger of this unit is probably the coolest I have seen on the market, as it is a capital D shaped device which sits in a charging base until needed. My remote alerts me to the remaining charge, and I have found that if I recharge when the base unit charge has depleted about 1/3 of the way down the indicator, then it is time to recharge. The recharger is activated by depressing a button on the device, whereupon it begins to emit a beep. The beep continues until syncronicity is established with my implanted unit, and I place it there directly against my skin while recharging occurs. If I practice recharging as I indicated above, the process takes approximately 45 minutes once per week, and I can easily do that late in the evening as I read prior to going to sleep.

Once, I had forgotten to take my recharger out of town to visit our daughter on a trip to her university in a nearby city. When we left town, I had not noted the unit was already at 2/3 charge. We were absent from home several days, and the unit went down to 1/3 total charge, beginning to give me warning signals recharge was necessary. Panic! We finished our visit, threw our belongings in the car and barrelled for home, not taking a leisurely drive which would allow frequent stops to see a shop or take a meal as we normally might. We made it home and the first thing I did was head straight to bed, hit the charger button and started recharging. It took two hours to recharge that time. I have been more cautious about the charging state of my unit since then.

So, to wrap this horribly long post, I feel blessed to have the unit. I feel freed to seek re-employment, one thing that was taken away from me by pain. There are some constraints, and I have committed them to thought as BLAST- do not bend, do not lift, do not stretch arms above the head, do not twist. To this day, I have been careful, because I want to get back into the swing of things, in a big way.... I want to be free to do many of the things I could no longer do with my family, friends, co-workers after that car wreck so changed my life. I wanna dance without a cane, I wanna hike, I already ride a bicycle, I already take in movies in theatres, I already take opportunity to go to restaurants and to visit friends, I already drive my own car again, I wanna earn funds via my skill sets so as to help support my family, a goal which I feel will soon be met. I have started a community group of the unemployed who seek work, facilitating the betterment of their presentation and search/networking skills so they might also find employment, and a real blessing has been seeing folks "graduate" from our group. This is cool, because it started just with our own church folks and spread to include all of the churches in our community. Kind of a pay-it-forward sort of a feel good thing.

One last thing.... before going to any doctor appointment, prepare written questions you have so as to be prepared and not pull away from the parking lot going "darn, I forgot to ask THAT!"

You will know from your Trial whether you will do well with the unit. I had mine for a week on Trial. The Trial insertion went smoothly although not without pain. The removal after a week was a snap..... however the BURNING pain was immediately back with a vengeance, so I had come along with meds and my Interferential Stim to get it going before I left the doc's office after removal of the Trial Leads.

In my prayers you shall remain,
Mark56Z