Rae;

Is it possible it is your SCS in your back that is getting your atttention? The mere fact that a 'foreign' object..it is positional..I only say this without any medical findings,because I KNOW my SCS is in my back..lower left hip with leads up inside my spine into shoulder blade area, as I can feel it..not exactly pain all of the time but sometimes.. just an ugh, restricting, sore feeling.. and I know that it is in there! The rest of your "I've had it feelings!!" seem like your fustration of your constant pain..and I am really sorry for that fustration.. we relate, I hope this helps you!! Just a thought..

Hugz, Kathy

Thank you Kathy
You definitely 'get it'.....
I've had the SCS for a year now and I love that it covers over the maddening burning pain in both legs.
But ever since the one lead had migrated down, that's when the lower back pain presented itself. Since that lead has been removed, I was hoping that would end the 'dagger in the back' issue.....
But it seems to be getting worse and I really wish I could hook up with a doctor who is willing and able to help me identify WHAT this pain is.....sometimes it's a 'burning'....sometimes it's just a deep 'dull' ache....and sometimes it turns into a fullblown flare which becomes acute (as in a 9 on the pain scale)......the 'daggar'
Jo*Mar says it well - it becomes a circle of insanity!!
Questions are bouncing around in my head such as 'is this an RSD-type of spreading thing?? or the nerves being aggravated by the muscle 'spasms'....

When I get back from my 'road trip' I hope to connect with a specialized PT rehab for starters.

Each reply to this plea I've sent out is like a piece of a PIE of 'logic'....and if I put them all together, I think there's an answer in there to be had.

The most frustrating part of it all is that when I seem to get ONE thing 'fixed'...something else goes haywire.

Thanks for your input....it's good to hear from you.....
I hope things are going ok for you
You've always been such an inspiration to me and you were there for me back when I was first getting my SCS.

Forever Grateful
Rae

According to Dr. Tennant in his Intractable Pain Patient’s Handbook for Survival, the first step is to get the pain under control, then identify and tackle the source(s).
http://pain-topics.org/pdf/IntractablePainSurvival.pdf

Likewise, Dr. Tennant's approach is analogized as a patchwork quilt. (I'm extrapolating a bit here). Lots of good advice/strategy in that book. I find myself reviewing it often when things get bad or change. YMMV.

Doc

Rae...

It's always my pleasure to help you..I hope I can shed some light on your dismay.. I have to wonder also that your pain is in combination of your unit and spread of your RSD as I think the implanation of the unit can promote spread, mine I believe did!!

Nice to visit with you and I am sorry I have been quiet lately..Iam getting there.. thanks for your wonderfully kind words!! They help... and remember, anything I help with please, say..I gotz your back..

Hugz, Kathy

Thank you Doc, for the links!
I tell ya, I get so sick of sifting thru nonsense online.....so I really appreciate when someone lands on a link that targets a specific helpful issue.

I will check it out now! And, I'll probably order the book! I actually DO enjoy researching the 'old fashioned' way.......BOOKS.....aka 'Paper Blogs'

Kathy,
yeahhhhhhh as much as I DON'T want to admit, I think I might have to get out of denial mode and realize that we are indeed talking RSD spread.
I looked at my journal and flipped it to the page on New year's Day and I wrote "Happy @#$ New Year!.....it feels like the burning is trying to inch it's way up my torso!".......

Guess I'll be seein ya over on RSD Forum Kathy.....you have been like the backbone of that forum.....always there for everyone.
I know you've had a rough year and the sadness you've endured.

Man, I just can't believe this!

Not RSD spread, that is not a good thing at all........ No. I can't accept that one yet. Nope.
Concerned lots,
Mark

Amen to that. I've reached an understanding with all my doctors. At first, they don't want to see/hear anything gleaned from.... "THE INTERNET". I get that. So I'm very particular about the source(s) of anything I bring them (they've even scoffed at material from Mayo, FCOL). They do tend to accept NIH, Medline, and a few others, and they'll take a look at what I bring them if I have enough credible corroborating data. Talk about a tough room!

Doc

Leesha I totally concur with you when you say you whih you had NEVER let them touch you.

I too am exactly the same. I started off with a herniated disc and had a discectomy on that...but it was no better. So had two spinal fusions L4/L5 and L5/S1 and I am worse now that I was BEFORE I was ever opened.
In fact my pain started off on my right side and its NOW in my LEFT side too......If anyone ever asks me what I think I say NO NO NO NO!!!

Rae you need to sort this out alright. I dont think its spasms either though. I took have that DEEP pain but I dont think I would go the spinal decompression road either....DO NOT LET THEM OPEN YOU!!!! well thats my advice

Jackie

I had two discs herniate on me. I continued on with my job in construction as I really had little choice; taking Vicodin and Soma. THis worked for about 4 years. Then I was on a really heavy job (actually I wasn't so good, the herniations wore through the sciatic nerve and I vomited at around 2:00 P.M. most days) and I ruptured the discs.

The Surgeon didn't believe what I told him, did not prepare properly, went in on the wrong side and found two major blow outs on the right inside. Total FUBAR.

The next doc spent 6 hrs just cleaning up the scar tissue and another 5 doing a fusion. The hospital screwed up and put me in tiny leg circulating sheaths and ignored my screams of pain all night. The next morning the doc wanted to remove both legs at the knee.

I was left with some weird stuff; now reflexes in my legs and never ending pain in my back which leads to sciatic pain and chronic muscle spasms.

Somewhere a nerve or set of nerves is being stimulated.

As far as I can tell there are limited solutions. List: No more than 1 hour in any fixed position, If you are thin a lace up corset helps a lot. A healthy dose (HIGH) of opiates and a good synergetic drug and perhaps a benzo diazapin. When the spasms hit stand up and put your hands on a wall, support and stretch gently.

In my state (WA) they are cutting off or down most pain med RX. The magic limit is 1/2 what makes my retired life 40% of normal. At 1/2 I'm in bed.

This is what it is. Doctors hate it because it's soft tissue damage and it's hard to document. The good/bad news is that with chronic pain you no longer "get high" when you take the meds. The doctors still act as if you do, but you don't and the therapists are hip.

Have you had any weight gain with the injury? Not using the back muscles or giving them extra work can exacerbate the spasms. They can't do what's asked and so they spasm.

They wanted to TAKE YOUR LEGS OFF??!!
Oh my Lord!

I'm so sorry reading what you've been thru!

I sure comprehend what you mean about the pain meds. It's unbelievable to me how high my tolerance is to the pain meds I take! It would lay a 'normal' person flat!
My aunt broke her arm/shoulder in 3 places and I saw the 'pain' meds she was taking - only a drop in the bucket of what I have to take to stay above the wreck that I've become!

I wear a lumbar belt, which does indeed help some. I've been told not to become too 'dependent' upon tho, as it will only serve to weaken my back muscles all the more.
....I like the 'corset' thought! Wish they were still in fashion ...... not that I give a cr@p about fashion anymore.....but it's hard to find an actual 'corset' in the mall........... guess I could take a gander of the online shopping, of which I've never really done.