I was diagnosed in April with CRPS after dealing with ulnar nerve neuropathy from a car accident in July 2011. Pain clinic tried Neuropin (sp?) which we stopped after 4 days due to side effects and no effect on pain (300mg 2x a day). Then we tried Lyrica 75mg twice a day. Stopped that after 7days again due to side effects and no effect on pain. At last appointment NP suggested either Cymbalta next or straight to SCS.

I have read online and heard from others that side effects of SCS include affected limb will feel like it is asleep all the time (pins and needles) as well as not being able to go through metal detectors or having to have device removed if MRIs or cat scans are necessary as they will screw up impulses from device.

My concerns are whether to accept device and all ill effects or refuse and worry about employer terminating me for refusing medical care.

Any advice is greatly appreciated.

And Welcome to a place where......if you want it, people will chime in. We cannot make decisions for you, but we can provide our experiences from which you may gain knowledge to help that all important decision you must make.

I was implanted in June 2010 with the Boston Scientific version of SCS for the purpose of better managing the lumbar and leg nerve pain I experienced following a car wreck. I have been very positively benefited by my decision to go ahead with the implant. Using it I have been able to wean off of all pain meds, and have used the device to manage my low body pain ever since. It does not make "the world go away" as in the oldie song, but it does help.

The sensation in my lumbar and leg area is as though my body is constantly under a "pins and needles" effect, which effect I moderate using the device remote control to increase or decrease the effect depending upon need. I learned to accept the electrical impulse effect and do not find it to be awful.

True, I cannot have MRI type studies and carry identification cards which declare my SCS implant status for those who might be concerned such as in flying on commercial aircraft. I have not found it to be a terrible price to pay in relieving my body from such horrific pain without meds.

Healing will take some time, as it does in all situations, and you will become familiar with terms such as BLAST to avoid doing things such as bending, lifting, stretching, or twisting post op if you choose to follow the path. Once you are fully healed and scarred in, BLAST will become less of an issue, and one of our friends here KZLRogue, an Army veteran who was into combatives martial arts stuff, golf, and other things which gave her pleasure, was able to resume Golf and Karate after healing. Life can be restorative following such a procedure.

It does not work for everyone, and some have gained removal of the device after a time because of infection, problems with body rejection, trouble with pain post operative, and the like. The device is NOT for everyone and going into the process is so invasive and costly you will be required to go through psychological evaluation to help determine whether you present with an ability to sustain having the procedure performed.

I Feel BLESSED to have had it done. I truly do.
Consider all of your options carefully,

Welcome!
I'm so sorry you too are experiencing CRPS. I too had the nasty side effects with those meds.....especially the Lyrica.

You've sure come to the right place for good input on these units. As you read thru other's testimonies, you'll get an honest take on the positive and not-so-positive experiences.

People describe the sensation of the stimulation differently. Pins and needles to one person can be soothing buzzing to another. A lot depends on how the settings are used. There are SO many variations of settings that it's pretty probable that you'll come upon one that suits you well.

The best thing about these units is that you get to do the trial run to see if this is something you'd like to pursue or not.
Don't let ANYbody make you feel rushed into making a decision. SCS is usually used as one of the last modalities if all others fail. So far it sounds as tho they've tried you on a few different medications and that's about it.

There are a lot of good qualities about these units and have given a lot of people back a quality of life. Yet also, as you are aware, there are those who don't fare well with them.
Take plenty of time to research both sides and go with your heart. If anything, at least consider the trial. Ask your Dr about the possibility of CRPS spreading from the procedure though. Some have had this experience and it's something to be aware of.

I personally love the stimulation sensation. It's a soothing feeling that covers over the horrible burning pain that had plagued me for several years. I've had it 3 1/2 yrs now and never have problems with metal detectors.

Good luck with whatever path you decide to take. Stick around, we're a great group of supporters and would love to help with any questions you may have.

It's great to have you!

Caring,
Rae

I absolutely agree with everything Rrae says. I just finished with my trial SCS and it was an agonizing decision just to do that. She is SO RIGHT - Do not let ANYbody make the decision for you, especially the SCS Rep. Weigh out all of the information you can find.
Prior to SCS trial I had received a total of 12 nerve blocks (Stellate ganglion blocks as my CRPS is in my hand and arm.) I had those approx. 2 weeks apart. They gave me very good results, but going in to have my neck punctured got old too and I guess scar tissue can start to develop. Still, if the pain gets really bad again I may go back to those. They are far less invasive than SCS. My back hurt pretty bad and is still very sore from the trial.
For me, for now, I'M NOT READY TO DECIDE on the permanent SCS implant. I will also look into more information on Calmare therapy as it is less invasive as well.
I still intend to post the details of my experience for anyone it may help. If you have questions please ask. This is a great place for support, help and information. There is a lot of wisdom here.

Welcome to the forum!

You've already been given good advice, so I'll just chime in with my experiences trying to find relief for my chronic neuropathy (with possible CRPS) in my left foot. I agonized over the decision to even do the trial for SCS - and this is one of those procedures that you need to be mentally ready for. By that I mean you have to be in a state of mind where you have accepted your pain and/or situation, and have an understanding of the risks and complications (which you seem to have a grasp on). MANY people get talked into doing the procedure by their docs, as it is quite the payday for them each time they implant one - so this absolutely must be your decision.

For me, once I finally decided to go ahead with the trial, it took me all of 1 min with the stim on to know it worked for my pain. I stood in my living room and cried - because I had forgotten what it was like to not hurt. I cried the day they took the trial leads out as well; and the time between the removal of my trial and the permanent surgery was hell. I had tasted 6 days of freedom from pain - and it felt like the cruelest thing on earth to have to give that up again, even if temporarily.

Like you, I too was worried about how it would feel, how going through airport security would be, and what would happen if I needed an MRI....etc, etc. However, once you experience that sensation of lessoned or no pain, then those things seem so much less important. Living day in and day out with pain is draining. The limitations imposed by having an SCS are well worth the benefits. I have been given my life back! As for the sensation - to me it feels like a cat is laying on my foot and purring - its actually a very pleasant feeling. As for Airport/security/metal detector issues - not really a big deal. Sometime I set off the metal detector, and sometimes not. I don't mind being patted down - but some people do. And the MRI issues is what it is. This one was the biggest concern for me, as I have a recurring bone tumor that is best monitored by MRI...but other scans such as CT will suffice. I am hopefull that in the future the two will not be incompatible. In fact, I believe there are certain MRI machines that do work for those persons with an implant like an SCS or pacemaker.

Anyway - if I had to do it all over again, I would have made the same choice. I would not trade my little unit in for anything

Coral Toe, that is a Purrrrfect way to describe the sensation!

AZ-di, please DO share about this Calmare therapy! I've never heard of this til now. I googled it and it has something to do with a 'scrambler'. Be sure to share more on this. I'd love to know how you fare with the treatments!

Rae

Of course, I'll share as soon as I get more info.

Oh #ell no
Your employer already fighting you on this
I just have to say it but I must educate yourself
if you have read your contract and "LAWYER UP"!
PLEASE DO NOT PUT UP WITH THAT
My boss understands and I'll do the same
I am hoping to return one day even if for
The disable for now still in trial mode with pain LEDs
My personal experience with LYRICA AND MY SEVERE
REACTION TO IT ALONG WITH MANY OTHERS WAS TO
FRIGHTENING THAT BEING MY REACTION

my daughter an epeletic is on it for years in large
quantity and is handling it especially well my angel
suffered her first grand maul seizeure oh the meds
that she has been put on is what my pain doctor
is suggesting I try for the nerve problems
"SOMETHING I AN WAY TO FRIGHTENED TO TRY AGAIN"


Someone who cares

They haven't threatened yet but it had been a 2 year long battle for everything else.

Quote:

Originally Posted by WilliamIOD They haven't threatened yet but it had been a 2 year long battle for everything else.

Have they done nerve blocks and, if so, were they at all successful? I'm not here to give advice I just know that for MY pain doc the nerve blocks she did on me were giving her clues on whether she thought the SCS would be successful. It was, and HAS been now for right at one year (my Trial was put in July 28 of last year - HUGE success).

Have you ever had any type of muscle stim? TENS unit, or anything of the sort? If so, then that is (to me) exactly what this feels like except I can control the intensity. I, too, find it super soothing and not at all like my leg (in my case) is asleep. I have a "sock of soothing" from my mid-thigh down to my mid-shin on one leg - thereby short-circuiting pain from multiple damaged nerves in the same area. I have the Medtronic AdaptiveStim device and wouldn't trade it for any other pain management method.

Good luck and keep us posted!