So my SCS trial is scheduled for 3 weeks from today- Nov. 27th!

Anxious/Excited...

Can you guys share your experiences of what to expect for the actual trial procedure? I talked to my doc about it of course, but first-hand accounts are so much more telling about what to really expect.

Thanks!!!

~Colleen

Yay!!! That's awesome!!


My trial was really easy. They put me out to insert the lead and woke me up to make sure I could feel the stimulation, and then put me back under to finish up.

I woke up in recovery and they turned it on. It was instant, and I mean instant relief. I had 5 or 6 programs. They gave me a book to mark my pain level, activity level, and whether I could do more, take less meds, etc.

I had 60-75% relief during my trial. My back was sore the first day, but it wore off quickly. I was able to keep up with my kids for the first time in a year. I was sad to take it out.

I got mine for crps/rsd in my right foot following a peroneal tendon tear/surgery in January 2011. Unfortunately, it mirrored to the left leg (foot only) but went all the way to right hip. It also spread to my right hand due to a bad IV in March 2012. Luckily it's med controlled for now

Anyway, I have a St. Jude eon. My rep said crps patients are love or hate. There's not usually a middle ground.

I love mine, even through my complications, and I am doing things that I was unable to do before.

Hope this helps!!

TK

My story is nearly identical to TK.
Went in, went to sleep, vaguely remember being woken as they did the placement, snoozed again, wake up in recovery, dude turns it on...programs it and I walk out PAIN FREE - first time in ..... wow, I have no idea how long.

That afternoon I took a L O N G walk (for me) down to the far end of our block (we're very close to one end) and back. It was 102 degrees and I DIDN'T CARE because I could walk, at a good clip, and not be in debilitating pain.

Tested it extensively over the next 7 days, was very sad to have it out (like TK) but exactly 2 weeks later, to the day, I got the implant.

Having had muscle stim many times over the years I am very familiar with the sensation this gives - I find it extremely soothing (especially since the alternative is NOT soothing! ) although some folks do not like it.

I did have about 5 of the 7 days dealing with pretty bad back spasms in the low-back (entry site) and hoped/prayed this would NOT be the case with the implant. It isn't - not at all. I think it's because there's something there, protruding from the skin and thru the muscles and such. That part wasn't too fun but it wasn't intolerable, at all.

I used this time to start getting used to the restrictions AND to better anticipate what I'd need for post-implant I recommend you do the same.

Hope it goes as well for you as it has for TK and me! I'm enjoying near 100% relief most of the time, down to around 70% on real bad days - overall I call it about 80% - 85% success. "They" call anything over 60% success so - I'm good to go! Only need to charge the unit about 1x/week (it comes out to like 10 or 11 days but I just do it each weekend so I don't have to think about it during the week).

VERY happy with this implant!

*tips his hat*

Well Colleen.....I too didnt have any bad experience with the trial....

I was in overnight. Was awake for the procedure, well sedated, but enough to block out what was happening but yet to be 'awake' to let my Consultant know where I was feeling the stimulation.

Then when I was back in the ward the Rep came and went through all the programmes with me. I had 3 programmes. Found it of great benefit immediately. I only had the trial for about 3 days, if my memory serves me well, well it was over two and a half years ago nowwhere does the time go!!! but I knew straight away that this was going to work...

I know everyone has a different experience and their level of pain management is different but as the others have said they too didnt have a bad experience. I trust and pray that yours will be the same AND that you will get great benefit from it too.......

Take care and look after yourself

Jackie

Congrats on the trial date being set!!

I'm excited for you! By now, I'm sure you've gathered that the support here is fantastic You won't be alone as you go thru this, that's fer sure.

How many days will you be on the trial? Seems everybody's have a little bit of variation, as each Dr likes to do these things a little bit different.
The jist of it is mainly the same tho, as you've seen thus far in your responses.

If you have utmost confidence in your Dr and have a good relationship with him/her, then you've pretty much got it made in the shade

Rae


Here's a copy/paste from what I posted on Ashley's thread since she asked the same question.........Call me lazy, which I'll certainly admit to!

Good communication is KEY to a successful trial. You will need to know what he will be doing to you while on the operating table, so that you can do your part in accurately describing where you are feeling the stimulation, or if you are 'not' feeling the stimulation where it should be. It's a 3-way teamwork when the moment comes for the Rep to turn on the unit, but it's you who will call the shot because only you can feel the stim.

Normally, when you get in the OR, the anesthesiologist will put you in what is called a 'twilight daze', meaning you are not all the way out of it. Rather, you'll be sedated just enough to be able to comfortably withstand the procedure, yet awake enough to be able to know what's happening and able to communicate to the OR team, and the Rep from the manufacterer of your SCS.

For me, during the procedure, there were a few times when it became uncomfortable as the local anesthesia seemed to wear down and I could feel the needle and/or the incision. All I had to do was mumble 'ouuuch' and he'd shoot me with more local to better numb the area. They are usually pretty good in keeping the patient comfortable. Again tho, this is why it's crucial to have good communication.


When you first go home from the procedure you may feel a bit overwhelmed because of the procedure itself and trying to decifer the surgical pain vs your original pain condition. Completely normal. Allow your body to be 'mad' at first, concentrate on laying on ice and rest the first day or so. In no time tho, you'll be up for tinkering with the controls and doing things around the house to get an idea of how you will fare with this. By day 3, I was completely in LOVE with the whole thing and thrilled once it became apparent that the stimulation was covering over my RSD/neuropathy pain.

Hope this helps somewhat

Rae

Hi Rae!

First, thank you for your reply (and thanks to everyone else, as well , the more I hear from others who have been through this, the better I'm feeling about it- it's more helpful than I can express! )

As for my upcoming trial: it will last for 7 days (I already have an appt for a week after to have it removed- btw, no one has mentioned how that part goes... It sounds painful, but I don't believe I'm being sedated or anything for it... This scares me. Can you guys share how the temporary SCS removal process went for you?)

Anyway, I am very excited for the trial! I'm just concerned about taking care of myself, and my dog, afterwards, as bending is not allowed. Do you know is crouching is okay?

Also, I am definitely NOT 'lightweight' when it comes to anesthesia, so I'm going to have to address that w/them for my procedure... I know this from past blocks, and also my bunionectomy surgery that set off my RSD- I woke up multiple times, and truly believe that it had a hand in causing the RSD... but that's just my theory.

My doc has also rushed through blocks before, and started before my sedation was even given... I'm hoping that as this is a much more major procedure, that he'll be more careful with this. But I'll be discussing it with him before, that's for sure!

My big paranoia at this point, like I mentioned already, is the removal... I may call them tomorrow to ask what they plan to do for it... I'm very restless regarding all this, so I don't think I'll be able to wait till my procedure to ask about the removal! Patience is def. not a 'virtue' that I have much of, especially when I'm excited or anxious about something.

Also, when you talk about being partially put under, does this include more than just the minimal sedation used for LSB (blocks) used to minimize anxiety/etc.? Because that's what I keep picturing and it's def. minimal...sounds like not nearly enough to get through this SCS procedure! Have you had both (or similar 'light' sedation in the past)- i.e. are you able to compare the sedation for the two diff kinds of procedures?

That's my other hang-up at the moment, lol...

Thank you so much for your help!

~Colleen

Yay your trial is all set-up! I'm sure you are hopeful and ready for this step. I know I am for mine. This weekend ill post how mine went. I'm the type of person to "research" things and I youtube SCS and watched a few videos and the all "seemed" like there is nothing to it. But for now all you need to do is get yourself ready!


Ashley

Ashley-

Thanks for your support... It seems I keep seeing more and more similarities between us- I also am the type to research (almost to the point of obsession at times, but I try to keep myself in check). Anyway, I've also watched youtube videos about it, and you're right, it doesn't seem too bad.

I am very excited for you and your upcoming trial! I'm praying for you, and for great success/pain relief! And I must admit, I'm grateful to have someone to hear about so soon before it's 'my turn'. I'm very grateful to you for being willing to share your upcoming experience. Hopefully, we can lean on each other, and if you ever need it, that I can be of support to you throughout your journey, as you have already been of such help to me at the start of mine

Thanks again, and best of luck to you on your trial- I look forward to hearing how you're doing this weekend. I'll be praying for you! (as I'm sure many others will be also).

~Colleen

Hi Colleen
Good luck with your up coming trial.. Mine was a year ago last May. My trial started on Mon. and was out Friday. Removal was the easiest part. I was standing and leaning on the exam table. My Dr. came in to discuss the results. His nurse came in and said here goes, with a slight pull the temporary lead was pulled down and out. Absolutely no pain. Hardly new he had it out. It kind of reminded me of the Berlin of dental floss pulled through your teeth. You just feel it as the last bit comes out.

My trial implant was done as an out patient procedure. In about 6am and home for lunch.
The sedation is light. My pain is due to abdominal pain from sphincter of odi disfunction.(pancreas). My pain is very specific in my upper gastric area but it is intermittent. Both the Dr. and rep were challenged to get the stimulation to such a small specific area. Make sure you pay close attention to where you feel the stimulation so that it covers the entire area you need. Do be afraid to tell them its not right. My Dr. said to try and do as many things that you normally do so that you can feel the stim during different movements.

I too have 2 labs who require lots of attention. I got to be pretty good at doing squats to get down low. Make sure to have a grabber for reaching things above your shoulders and down on the ground after implant. Things will always be out of reach. Before your implant go through your house and bring things to counter level that you use frequently. Remember no reaching above your shoulders, no bending, no stretching, no lifting above 8#, no twisting.
Its so easy to forget when the pain eases after about three weeks to try and reach or twist or bend. Many have used a back binder that their dr. gave them for extra support.

My doctor was very cautious about infection and waited two months between trial and implant. He didn't allow ice for relief of pain because he didn't want any moisture near the incisions. I found sweat pants and yoga pants to be very comfortable while healing. Good Luck.

Sandy Kay

Having my trial lead taken out was no big deal at all Colleen.

Basically my Dr was chatting away taking off the bandages etc and next thing I knew he said 'ok all done'. I felt a slight tug but that was it!!! Honestly nothing to worry about.

The only downside for me was then waiting for the permanent implant to be done. That took 4 months. But that's cos my Dr was on holiday etc.

So don't be stressing out about it. Just try to relax and hopefully all will be well and we will be cheering you on for the permanent implant

Jackie