[bobber]

Hi Group
After all the blood test,bonescans,mri, emg,and injections,,my dr now has dignosed me having rsd,,in writing,,,is this a good thing? to enable me to recieve treatment else where? what benefits are there for me with a written dx of rsd in writing? also,,he wants me to go to alberquerqe to have a stimulator installed,,ive read some of your blogs where it was good and others saying it made it worse,,one of my back injections really in flamed me for 4 days,,it was like it irritated it,,any way,,id appreciate your all's input,,wheather youve had a stimulator inplant of not,,but exspecially if you have had one,,i really need to know how to procede,the last thing i want to do is make it go full body,or make it spread and make it worse ,,,thank you all,,,,,,,,,,,,,bobber

[SBOWLING]

Hey Bobber,

I had full body RSD when my doctor and I decided to try a stimulator. It was too hard to get it programmed to help the pain. The programmers and there were many said full body RSD is too difficult for the design. I tired for 2 1/2 years to get it to work for me. I had it removed last November.
We are all different and what works for some doesn't for others. I have gone to Philly several times to see Dr. S. He is an RSD specialist. He told me if I had asked him he would have told me not to have the stimulator implanted (I wasn't his patient yet).
Keep in mind. Doctors have contracts with the supplier of the the stimulator. I would think there is a clause for the number of units implanted. So the doctor may not have your best interest in mind but the success of his/her practice. Or he/she may have run out of options for your treatment. My doctor made me feel like we had tried everything there was and the stimulator was my last option for pain relief. I was desperate and said yes.
I now the decision can seem overwhelming at times Good Luck!!
Take care,
Sherrie

[bassman]

Bobber,

I had a stimulator installed in 2003 for RSD in my lower left leg and foot – about from the knee down. I understand that it does work better when it is localized like that. The “idea” is that they can target the specific nerve group for that area. The larger the area, the harder it is to “zap.”

Mine worked well for a few years and then stopped being as effective. The manufacturer’s representative said that one lead had stopped working and the other may have slipped a little. A different neurologist had also told me that he thought the installation was not very good. So my advice is: Check references from your doctor. How many has he/she installed? Are there any of his/her patients who may be willing to talk to you? (Confidentiality may be a problem here.) You could also find PTs, OTs, and nurses who know the doctor’s work. I am probably over-reacting on this, but I do believe I would have a better stimulator if the doctor had done a better job putting it in.

There have been huge technological advances since I got mine in 2003. The units are smaller and have better adjustments.

Finally, remember that there are multiple steps in getting a stimulator. First, a block (at least one) to see if targeting a specific nerve area does any good. Than, they do a “trial” stimulator. Only the tips of the leads are put in. Everything else is kept outside and taped or strapped to your body. This is done to see if you get relief. Only after that will you be considered by the doctors and insurance. By that time, you should have a good idea if you really want this.

Do plenty of reading of on the Internet before you proceed – not just here. Do not rush into this. It should be done after a lot of prescription and therapy treatments have been tried. It is a big step.

Good luck to us. Keep us posted.

Mike

[dealingwithtos]

Hi Bobber,

I had a stimulator implanted in November of last year. I have RSD in my arms due to rib removal a few years back. First, the surgery is not easy. It takes a long time to fully recover from it. For me, I first needed a trial of the stimulator. It's where they insert the leads, but the battery is taped to your back (or whereever) and not implanted. You try it out for a week and then you have it removed. Typically a psychological evaluation is required by insurance companies also.

The feeling that the stimulator is not for everyone. You can get a jolt if you have it up too high and for me is greatly affected by my posture. My leads are at the base of my neck so any movement by my neck or my posture increases the stimulation.

I'm happy to say that I'm a success story with the stimulator. It has greatly decreased the pain and am no longer on narcotics all day/every day. But, I do want to mention that it's not a "miracle" cure. I so still have muscular pain.

Whether this will help/hurt your situation, unfortunately nobody can answer that. Everyone is so different and reacts different to treatment and medications. My RSD didn't spread because of the implant. Does the normal course of RSD spread - maybe. Has this helped me and am I glad I had the implant - absolutey.

[GalenaFaolan]

Originally Posted by bobber

one of my back injections really in flamed me for 4 days,,it was like it irritated it,

That bit right there shows your pain is SIP, Sympathetically Independent Pain. Once pain is SIP, blocks cause more pain because it over stimulates the nervous system and a SCS will not help help pain which is SIP, it only helps, somewhat for pain that is SMP, Sympathetically Maintained Pain.

To even think about an SCS with SIP, could mean a rapid spread or other problems. It really isn't worth the risks no matter if pain is sip or smp. 95% of the people I've known over the years who got an scs had rapid spread, multiple surgeries and/or infection. The most common cause of scs that quit working is because that person's pain is sip now. All rsd'ers will have their pain go independent sooner or later, it's the nature of the beast.

This is just my opinion based on six years of talking and researching. Just my 2 cents as they say.

Hugs,

Karen

[bobber]

Bassman, galenafaolan, dealingwithtos, sbowling

I really appreciate the info. I've heard that only a small percentage of people who used stimulators got relief and I'm glad that dealingwithtos did. I've heard alot of what you all said was true about the stimulators not being worth the risk and I appreciate what galenafaolan said about sip and smp pain because I was wondering about that. I also don't know if I wait until the rsd is worse if the stimulator would even help at all or only aggravate the rsd and make it spread as the injections did. Thanks for the feedback and any further feedback would be appreciated.

Bobber

[daniella]

Galena said I was going to say. I had been suggested the scs 1.5 years ago and anyhow waited because of the fear. So this last year my pain was really bad and the previous meds etc were not doing their job. I went to a new pain doctor who did the infusion of lidocaine and then the lumbar block. After both of those if it did not relieve I was going to try the scs. That was the plan if they worked I would continue with the blocks. Anyhow they did not work and both procedures increased my pain by a huge amount so my pain doc feared doing the scs because that also could. SO back on the meds. If this does not help I would have to take a chance with a blockade to see if I went totally numb but could still feel the pain or the pain got worse the scs would not be an option but if the blockade gave relief I could take the chance with the scs. I hope I made sense. I know a girl though who was in a wheel chair and could not eat from her rsd. She had one scs that had to be removed but then got another one and now is able to walk and eat and is getting back to life. It is a hard call I guess my point is and everyone is different. I think looking at the pros and cons and finding a very good pain doc who can really look at your case and not rush you into a big procedure is key

[edever34]

I had my SCS a year ago. It has helped me a lot-HOWEVER mine is not the kind that pain Drs do. Mine was done by a neurosurgeon that we knew. I am not saying that it is in anyway perfect,but I was pretty desperate at the time and could barely walk. Now I am able to put a real shoe on for awhikle each day and take brief walks. I am grateful. Plus I have a GREAT Rep who continues to work with my programming as pain shifts etc> Hope this helps.

[bobber]

thanks daniella and edever4
its a tough call,,it could be a blessing or a curse..i appreciate the feedback. im glad your friend got relief..if i do get one ,my painmanagement dr referered me to a neuro surgeon who would be doing the implant,,,,,,im going to wait,,,any other input is welcomed,thank you all,bobber

[lexiemae1]

I have went to my pm doc and after about a year, we tried neurontin, couldn' take that and work, cymbalta hair fell out and high blood pressure spike, so I had to come off that. The only other thing I am taking is hydro 10 mg and she just now gave me tizanidine just about a week ago. and I have had at least 8 epidurals. But she says she has no other options for me but to go ahead and implant the scs. I would hope their are other docs who could come up with a better plan than that. or series of meds for me to take. I have had 9 surgeries in a short time in my life and I sure don;t want something inplanted permanently in me if I don;t have too. Advise me also Peeps!! Please !!! Should I or shouldn't I/// Which of course requires going to a psychologist and an consult for a scs implant which is another bill or doc.. can't afford all this.

Originally Posted by bobber

Hi Group
After all the blood test,bonescans,mri, emg,and injections,,my dr now has dignosed me having rsd,,in writing,,,is this a good thing? to enable me to recieve treatment else where? what benefits are there for me with a written dx of rsd in writing? also,,he wants me to go to alberquerqe to have a stimulator installed,,ive read some of your blogs where it was good and others saying it made it worse,,one of my back injections really in flamed me for 4 days,,it was like it irritated it,,any way,,id appreciate your all's input,,wheather youve had a stimulator inplant of not,,but exspecially if you have had one,,i really need to know how to procede,the last thing i want to do is make it go full body,or make it spread and make it worse ,,,thank you all,,,,,,,,,,,,,bobber