I am new to this site for posting but I have been viewing this site for a while.
I am so happy to see such an active site. Thank you all for sharing I have gained a lot of information and comfort from you postings!!!!!!

I have a SCS and can tell you of my own journey with it. Your first question was regarding spreding. I have had spred since the SCS. I was told that it could possibly stop or slow the spreding but is not a deffinate.

As far as recovery time it was much longer that I was led to believe. It was 5-6 weeks before I was aloud to start returning to unrestricted activities.
No driving, no lifting, no bending, etc...

I have some relief from the permanent stimulator (ANS rechargable), I feel I had more relief when I had the trial stim. I have had my pain meds increased since having the permanent stim. but keep in mind everyone is different.

I am inpressed by your vigor in standing up for your self!!!

I hope this is helpful.

jclg

I heard from my regular pain doctors nurse today. She will ask him about what this new doctor said.... and see if I should come in to discuss etc... or go directly to the doctor that he has do his SCS in the nearby city.

She said it all did not sound right to her. She said from how I looked the last time she saw me, she did not think I was ready for the SCS yet.

She did say my doctor is taking classes in facet injections, but would send me to the same doctor who does the SCS for epidural infusion or facet injections.
------
Amber, I found this info on facet injections. In my case, I think the neuro wants to try it because there is some significant arthritis in my C-area of my neck, and possibly some deformity. I don't fully understand the exact problem there. I know that upper back/neck/shoulder pain was what sent me to physical therapy where I was injured last year that led to this round of RSD... so he thinks that treating this area may relieve some of my pain - even though it is not RSD pain. Sort of like how trigger point injections help me because they help my myofacial pain.

Jules

"What is a facet injection?

It is an injection of both a long-lasting steroid “cortisone” (like triamcinolone or methylprednisolone) and an anesthetic numbing agent (like lidocaine or bupivacaine) into a specific facet joint of your spine. The injection can be placed inside the joint capsule or in the tissue surrounding the joint capsule. Corticosteroids reduce inflammation, and they’re very effective when delivered directly into the part of your back that is causing pain. Corticosteroids are different than the anabolic steroids that athletes may use.

The facet joint is the moveable joint of the spine that connects one vertebra to another (see Anatomy of the Spine). This procedure is different than an epidural steroid injection, which injects the steroid into the epidural space of the spinal cord.

Facet injections may provide relief of pain and inflammation as well as provide more diagnostic information for your physician. The injection “blocks” the pain in much the same way as your dentist would use an anesthetic injection to block pain in your jaw before working on your teeth. Injections into joints or nerves are sometimes called “blocks.” Facet blocks can be used as a diagnostic test to determine if you will benefit from a facet rhizotomy. The pain relief can last from days to years, or in some cases, permanently."

http://web.archive.org/web/*/braintalk.org

I hope that this link works. If not try putting in a search for "way back machine" -- and then from there try http://braintalk.org Hopefully one of these will put you through to some of the archives. What I picked up was only some of the threads from 2000-2004. If you go to "old" BT and do a search on "Archives" -- there are some smart members who have different instructions on how to get through to some links. I take no credit. lol.

Ok...back to the discussion at hand.

In my opinion, this doctor pushing you towards an SCS...his tactics SUCK! To put a person in pain in this position of stress like he has, is just awful. Enough said. I'm happy that you are hearing ALL sides to the story of SCS so that you can make an educated decision for what is right for YOU.

I have had many blocks and epidurals. Like maybe 6-9 probably on the average per year. I also had 2 five day continuous epidural which was done as an inpatient hospitalization. The 1st continuous epidural worked wonders on me giving me lasting relief. But the 2nd a couple of years later, I think, didn't work as perfectly. But I'm telling you just to have 5 days of relief and a month or so, is fine w/ me. Sometimes doctors don't understand what "relief" means!

Many members have posted that blocks/epidurals just don't work on them and this is quite normal for RSD'rs. Others like me, even though I've had RSD for almost 7 years SGB's (blocks) and epidurals (which hit both arms) still continue to provide me with wonderful lasting relief. My doctor gives blocks in a series. Meaning I receive them once a week and have at least 3 or 4 until my pain decreases. Having just one just doesn't work! Oh, and he doesn't put anybody to sleep. My procedure from the time my bed starts to roll to the time I'm back in recovery...7 minutes. You will find that how each Doctor administers blocks vary quite differently from patient to patient, state to state.

There are members who have had facet injections here. Hmm. Can't think who they are for the life of me.

If you want to take my opinion, I'd go for an injection as fast as possible. In your list of questions...? I'd make sure that your doctor does have the aid of a florescope! This is the fancy name for an x-ray machine. This way your doctor is not going in blind. Before I was transferred to my current doctor, I had about 6 blocks done w/o a florescope. Urgh. They were very difficult, long, and painful. The numbing medicine is the only pain I ever feel. He takes a picture first and administers the 1st shot of numbing med-hurts a little...then of course, the deeper shot hurts a little more. I use my LaMaze techniques of deep breathing and try not to ignore my lovely doctor talking to me about how I should quit smoking! This is his way of keeping me calm....he thinks he is funny huh?

The steroid is good. When I'm in awful pain, and doctor knows there is alot of inflammation he adds steriod to the injection. The series of blocks/epidurals that I get, he can't add steriod to each of them. But when he does, I sure can tell.

We also had who we called "Our Resident Block Expert" -- Cam. I sure hope that she will find us. She has oddles of info and her mind is a sharp as tack! Not like mine which I forget my own name from time to time. Darn meds!

Anyways....That's it for now.

Dana

I may not be on exactly the right list, but perhaps my experience will be helpful to someone.

I had an ANS stimulator implanted for thoracic back pain (peripheral rather than spinal column) - both surgeries were more invasive than I had expected and I wished I had scheduled more time away from work for more than 1 week after the permanent implant. I think doctor's intentionally don't tell you what the recovery is going to be like??

Like others on this post, I also had trouble with the trial lead being pulled out of place - I went on a business trip flying to Boston - surprised they let me on the plane with wires coming out of my back and a big stimulator unit. The unit worked great on my way to Boston, but with the lead pulled out I was screwed on the way back!

It's true what they say - don't expect a 100% solution. My wife seems to think I'm supposed to be cured now and that I shouldn't need ice packs or still be in pain, what can I say - no magic bullet here!!

Was it worth it - I was just hanging on to be able to make it through a work day and support my family, with serious concerns I would have to become disabled. Now, I'm just managing pain with good days and bad days. If my battery ever dies I get a rude awakening for how bad things were before.

I use my unit full blast all the time and end up charging about 2 hours a day. I've broken about 4 different charging kits now tripping on the wires or bending them wrong - ANS replaces them quickly but I wish they were more hardy.

In case you are using an external TENS or interferential unit - the sensations are similar. They told me that the implant would be more powerful than the external units - it's certainly more convenient and practical than trying to keep the stickies in the right place where I can't reach, but more powerful, no. I would gladly have a second battery and unit installed to blast this pain with more power.

My doctor didn't even mention this option to me, but I know ANS also has an RF option with an external battery - if you struggle to manage the pain with an external TENS or interferential unit, you may want to take a serious look at this.

They tell you not to drive with the SCS turned on - I've been jolted once or twice in the beginning but otherwise I can't imaging driving without the SCS.

Good luck to all!