[Patti_Christmas]

I had my stim implanted in Dec of 2010 (actually, the first one was Sept, had to be re-done, and had a paddle instead of just wires), but I am still super tender in the surgical area.

I had trouble with sensations in other areas even after the paddle. After my Dec surgery, it seems that the RSD is now affecting back, arms, hands & fingers.

It was a few weeks to a month that I was able to run the stim after some swelling went down (still have a lot), but I have been using it.

The surgical site has been very, very painful, so today I thought I would "go it alone" and not turn the stim on. I was thinking that maybe this would explain my tenderness in that area. Well, while my surgical site isn't as painful right now, the numbness in my fingers is horrible!! I also notice they are a bit purple-ish. Tomorrow, I'll turn the stim back on to see if the pain increases in my back and if some of the numbness goes away.

Has anyone else experienced any of this? I really wasn't expecting the numbness to increase, as the stim was implanted to help only with my right leg and foot. It's just real odd, and trying to figure out before doctor appointment on Thursday.

[Mark56]

However, Patti, have you given thought to making a run to the ER with your purplish finger issues. Goodness, I have had countless surgeries on my arms due to overcoming some of the wreck trauma, and when my lumbar located and focused stim was made permanent I have experienced NOTHING such as you describe. Perhaps there is another issue afoot which should not await a Thursday doc appt on your stim? Just thinking out loud. Pooh could certainly correct me on this if she is around.

Prayin for you,
Mark56z

[edever34]

All that I can add is that after my SCS lamanectomy implant ,my surgery site in spine area hurt badly for almost a year. It still is tender and going on 3 yrs. now. Carol

[Mark56]

So Sorry to learn of that longstanding sensitivity and pain at the laminectomy site. I, too, had laminectomy at t8-t9 for paddle insertion, but the site healed and desensitized as any of my other back surgeries. Is there not some topical desensitizing agent which might be used to ease the pain of your sight? I only ask, as my doc prescribed a fairly new cream TPS as I recall he referred to it as a topical analgesic with gabapentin as an active ingredient to address specific topical nerve issues which could arise as I become more active.

Caring,
Mark56z

[Patti_Christmas]

Originally Posted by Mark56

So Sorry to learn of that longstanding sensitivity and pain at the laminectomy site. I, too, had laminectomy at t8-t9 for paddle insertion, but the site healed and desensitized as any of my other back surgeries. Is there not some topical desensitizing agent which might be used to ease the pain of your sight? I only ask, as my doc prescribed a fairly new cream TPS as I recall he referred to it as a topical analgesic with gabapentin as an active ingredient to address specific topical nerve issues which could arise as I become more active.

Caring,
Mark56z

Hi Mark,

At my epidural appointment last week, my doctor did prescribe a Compounded Pain cream. The insurance company adjuster has really been a difficult person to deal with on this matter (I went over her head, big mistake). Hopefully the cream will be here this week, but probably not in time to see if it helps before my appointment this week.

[pooh_ac]

Originally Posted by Mark56

However, Patti, have you given thought to making a run to the ER with your purplish finger issues. Goodness, I have had countless surgeries on my arms due to overcoming some of the wreck trauma, and when my lumbar located and focused stim was made permanent I have experienced NOTHING such as you describe. Perhaps there is another issue afoot which should not await a Thursday doc appt on your stim? Just thinking out loud. Pooh could certainly correct me on this if she is around.

Prayin for you,
Mark56z

Hmmm could be a lot of things but sounds like some circulation or RSD issues. May need to call your doc and report this in the am

[Patti_Christmas]

Originally Posted by pooh_ac

Hmmm could be a lot of things but sounds like some circulation or RSD issues. May need to call your doc and report this in the am

They know about the spreading/flaring of the RSD and the numbness of the fingers. The purple-ish color started last night, as the numbness got worse with the stim off. I have my stim on this morning to see what happens. It's been on for about an hour now, surgical site is started to hurt badly again, numbness still bad. I'll give it until this afternoon and then call the doctors. It's just such an odd thing...

[Patti_Christmas]

Originally Posted by Mark56

However, Patti, have you given thought to making a run to the ER with your purplish finger issues. Goodness, I have had countless surgeries on my arms due to overcoming some of the wreck trauma, and when my lumbar located and focused stim was made permanent I have experienced NOTHING such as you describe. Perhaps there is another issue afoot which should not await a Thursday doc appt on your stim? Just thinking out loud. Pooh could certainly correct me on this if she is around.

Prayin for you,
Mark56z

I thought about it, but I really think it's a stim/RSD issue. In October, I did have a stress test on my heart because of the original stim and it all came back fine. Honestly, since the Dec surgery, is when I went from bad to worse. I was also deeply disappointed with our ER, as they weren't familiar with the stim (even though I had it implanted at this particular hospital). My PM doctor didn't even call or check in on me during the October stay (the Medtronic rep did though).

I am wondering about the possibility of the paddle (even though surgically placed) might have shifted a bit and is pinching off a nerve? Could it be affecting a nerve or a blood vessel? Even though they did X-Rays while doing the implant, should I "gently suggest" to the doctor to check things again? Ever since the orthopedic doctor explained how things were done, I've been worried about my "soft bones" that caused problems with my 2nd knee surgery. I've also been concerned with the information given to me from a nurse friend about the medications and how I should have my blood work done again since I've been on Cymbalta, Lyrica and Celebrex for a few years now.

I might give a call in to the Pain management doctors as well as my primary care doctor because I'm not feeling the best today. It's just hard to explain to them sometimes what is going on.

[Mark56]

Originally Posted by Patti_Christmas

I thought about it, but I really think it's a stim/RSD issue. In October, I did have a stress test on my heart because of the original stim and it all came back fine. Honestly, since the Dec surgery, is when I went from bad to worse. I was also deeply disappointed with our ER, as they weren't familiar with the stim (even though I had it implanted at this particular hospital). My PM doctor didn't even call or check in on me during the October stay (the Medtronic rep did though).

I am wondering about the possibility of the paddle (even though surgically placed) might have shifted a bit and is pinching off a nerve? Could it be affecting a nerve or a blood vessel? Even though they did X-Rays while doing the implant, should I "gently suggest" to the doctor to check things again? Ever since the orthopedic doctor explained how things were done, I've been worried about my "soft bones" that caused problems with my 2nd knee surgery. I've also been concerned with the information given to me from a nurse friend about the medications and how I should have my blood work done again since I've been on Cymbalta, Lyrica and Celebrex for a few years now.

I might give a call in to the Pain management doctors as well as my primary care doctor because I'm not feeling the best today. It's just hard to explain to them sometimes what is going on.

Hi Patti-
Given that my pain management doc was deeply involved in the whole implant process, that is a course I would have followed if I had suspicion that something was amiss with the stim.

Hoping the best for you,
Mark56

[Rrae]

I haven't had the chance to give you a 'proper' welcome to NT and to say that I am very glad you've found this forum. I've been away on a family trip and am catching up on reading all these posts...

I am so very sorry to be reading about your battle.
RSD is just wicked. I literally grit my teeth when I read what it does to others. I too am dealing with the question none of us want to face....is it perhaps spreading..........
I take a day at a time and sometimes I just feel like I'm sorta like an empty 'shell'.....existing, but not really 'living'....you know?

We just have to hang on to the hope that somehow things will get better....research and awareness will improve......and we will get a quality of life back..... this is the hope we must latch on to and never let go of.

This forum is so FULL of genuine care and support. You've been getting so much wonderful feedback....and we are learning from YOU as well.

I noticed on another thread somewhere that you were inquiring about heavy metal screening. I recall having something similar done via bloodwork to rule this out among the many other testing and re-testing during endless process of elimination.....
If you haven't already, I would urge you to check out the 'Peripheral Neuropathy' forum. It is just PACKED with researched material on many issues such as this. Take a look at the top of the page in a special little section called "PN Tips, Supplements, etc"...
Another quick reference way of finding a particular issue is to use the 'Search' feature at the top of the page....just type in 'Heavy Metal Toxidity/Screening' and you will be shown posts of discussions and information on these specifics.
.....just thought I'd throw this out there

Even tho you are battling RSD, i have found that the PN forum has endless information that could tie in to RSD issues.....alot of things go hand in hand when it comes to these 2 conditions.
Here is the link to get to the Peripheral Neuropathy forum if you want to take a peek
http://neurotalk.psychcentral.com/fo...aysprune=&f=20

It's in the main menu alphabetically listed above RSD.....

I hope and pray that answers begin to come your way. You've been through so much.

Truly Caring
Rae