i already posted this on the main site, but figured i would post it here to.
i had an SCS implanted by Joshua Prager in August of 2010. he put in four leads, one for each limb. The SCS never made me legs feel better, but took my arm pain down to a 5. we were very happy. a few months into it i started to get shocked when i turned my head. this we heard was normal and the leads needed to scar in. it soon became so bad just moving my arm slightly would send shocks through my body. horrible horrible shocks. my father is very upset about this, and is very upset at Joshua Prager for saying this was the answer. i'm only 18 and now have this in my body forever, we refuse to have it taken out. why have another pointless surgery? we were wondering if anybody else has suffered from shocks like that? has anybody else seen prager? i'd love to hear how your experience was.
thank you

Welcome to this neck of the woods, and I hope your inquiry regarding the physician may come to some help. As for me, I am in Colorado, and do not know your doc. The issue which really troubles me is the notion of your AGE. You are only 18? I cannot imagine what would have brought you to such a horrific result as to call for a quadrilinear implant.... and to one device or two?

I wonder about the electric shock phenomenon you endure. The ONLY time I EVER had such an issue zap me was Pre-Implant surgery when I used an Interferential Neuro-Stimulator, which was basically a Tens unit on Steroids as the rep who provided it to me explained. It could be ramped up to quite a vibe, but if... and I mean IF the wires of the leads to the gummy stim patches came loose from one of the patches I was in for a REAL shock!! Never comfortable, and ALWAYS like hitting a Live Wire, which is what it was......

So, given the neurological issues of nerve pathways which are electrical highways throughout our bodies, I wonder whether a turn of the head, a raise of the arm, a twist of the torso, and it would not be too hard a leap to catch your issue. I have not experienced it since implant surgery, ever. My implant is a thoracic location so it delivers signal to the lumbar region and both legs, but there are no leads going TO my limbs, only paddles on my spinal cord in the location which influences the nerve bundles which serve my lower extremities. So, I am coming alongside saying I will surely pray for your situation, knowing a few of the others who have experienced electric shock phenomena will tag your thread. Wait patiently, and the fish will swarm around the bait of this problem. I can nearly guarantee it. Sophie? Tara? Rae? Y'all out there?!?!?!

We will be communicating, OK?
Prayin,
Mark56

thank you so much mark! it is great it be on here again it's been awhile. yes i am only 18. me and my parents can not believe we went along with the surgery, for years we had been against the SCS. but i guess when you have " a rsd expert" telling you it will help. you start to believe him. i only have one device. i have RSD in all four limbs and my back, and now in my stomach where i had the baclofen pump put it. oh the live of us RSDer's. Thank you again i will wait to see if anybody else has any input.
does you stim work now? do you have medtronics or boston scientific?
yes i would explain it to my doctor like you were getting shocked! put your finger in a socket that's how it felt. and he every time would tell me " there is no way it is that bad" if only they could live in our shoes for 5 minutes, even 5 seconds!
you all are in my prayers!

I have Boston Scientific, an installation for the treatment of low lumbar and lower limbs...... and it works, fantastically. I honestly believe the situation combined with the fact my rep allowed me to program my own stim had SO MUCH to do with the success. Implant 30 June 2010, and now I am practicing my profession once again with zest and hope for life! I feel blessed and thank you for the prayers. It just seems so difficult your situation turned out for the worse after receiving such an invasive procedure.

Any possibility of a second opinion on your case by a different doc?

Prayin,
Mark56

That is a true blessing that you are able to practice your profession again! i am so happy for you. as of now, we have ran out of doctors to go see, that we believe will have a different plan then the other 10 we've seen.
our most recent try was Nancy Sajben in La Jolla CA. her round of meds made me very sick, but i have a friend who is now back in the ocean thanks to her treatment.

Yes, it is a grand blessing once again to be able to help others with the issues I was trained through schooling and life experience to handle. Knowing it aids others in their employment, helps a company to be able to move further with a construction project that helps people keep paychecks rolling..... stuff like that.

I truly hope and pray something can be done or occur which will aid your situation. Yeah, UCLA, but so many good have come through the the halls of that school. My orthopedic surgeon who was on the implant team is highly thought of in his field and taught at the school. It is always so hard to see through the fog of what is the best course to take, the treatment to allow..... this is why it was difficult for me to decide in favor of SCS implant because I have had SO MANY surgeries since the car wreck, and everything with its fine print carried risk... including with the SCS implant documents I signed the risk of permanent paralysis. Paraplegia. So, many months it took, research, searching my soul with the aid of my precious wife and God, until finally I relented and followed the path to SCS. The brief take on how I got there, and I feel blessed it worked to the good, which gives me ALL the MORE reason to pray for you, for Yellow, Tara, Eva, Rae, Sophie, Jenna, Saffy, Pooh [who is lurking a lot right now] and SO many others. Things that go wrong or not as right as was hoped. It is only in the reaching out I am able with God to make sense of this stuff. Our place is filled with pain, and you have so much of it.... I am with you in this... just not knowing what to do but respond and to pray.

So I pray,
and give a smile
then a group hug,
Mark56

tmullen,
Please check your private messages.

I'm so sorry to hear what you're going through, especially with how young you are. You've had x rays to make sure the leads haven't migrated and a report done on your device to make sure it is working properly, right? Maybe it hopefully a hardware problem that can be fixed? I really hope you can find an answer so you can get your SCS back to working for you and you can live your life

I'm glad you're here! We can certainly comprehend what you are saying.
......It's times like these that I'd like to give these doctors a swift kick in the baZATTA
So many many times I see people left hanging. The follow thru care with these things is almost non-existant! Doctors tend to do the surgery and then turn you over to the reps and consider you 'done'.

You are going to have to start making some demands. Sometimes that's the only thing that will get you 'heard'. Your folks would be wonderful advocates and if need be, you could always take it to the next level.....the word 'Attorney' might get their attention.

My first suspicion would be the scar tissue, which could push the electrodes and possibly cause other issues. Scar tissue insists on having it's way, unfortunately.
Have they checked for lead migration? Even just a tiny amount of migration could possibly be the culprit.
Otherwise, I would consider the possibilty that when you move your head, the electrode/lead wires may be hitting a raw nerve.

In any case, you need to be heard. It is unethical for them 'not' to listen to you and try to find a way to make you more comfortable.

I'm sorry you are dealing with this.
Please stick around and let us know how this unfolds for you.
We are a caring bunch!

Rae