Sore and frustrated - bit of a vent.

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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/28/2012 3:53 AM (GMT -6)   
On Thursday, I was scheduled to have a revision surgery on my spinal cord stimulator. Since I fractured my spine in August/September last year (multiple falls, leading to multiple fractures) I've had intense pain whenever my stim has been turned on. It's slowly improved from instantaneous pain to pain setting in after the stim has been running a short time. My PM felt that it was a combination of sensitised tissues from the injuries (among other things, I had >50% crush to T12, also less severe Fx to T10 and T11) and current leakage from a damaged lead, and after a lot of discussion, we'd decided to replace the leads.

Anyway - less than two hours before leaving for the hospital, I got a call from my SCS tech (who's been with me for the whole six years that I've had the SCS; I've been with my current PM for four years) saying that he thinks MOST of the problem is tissue sensitisation - and that replacing the leads is not going to help the pain. Tells me to wait until he's spoken to my PM, he'll ring me back and wait until I hear from him before I come to the hospital. He rings me again, tells me to come in - that he'll do another diagnostic on my SCS and that the plan is now to try to shift my leads to clear the worst of the fracture site.

I go through that with him - and we find that the main problem is with the wee paddle lead, not the perc. The paddle was so tight to place last time round that I ended up with bad nerve root bruising - had severe pain during surgery, then ended up with a semi-numb/weakened leg for a few weeks after surgery. It wasn't my PM who did that op - but my tech was there. Upshot - PM decided it was too big a risk to try to shift the lead lest he cause more damage.

That took us to Plan B. I'd was originally going to be transferred to another hospital for a ketamine infusion a couple of days after surgery and we decided to hold off because of how ill it makes me. When surgery was cancelled, my doctor asked me how I felt about going ahead then and there. Hospital kept assuring us they could do it - then decided last night they couldn't - on account of not having a HDU or ICU in case something went wrong. The only other place he normally does them, I had a horrendous experience last year and vowed never to go back, so it's a rock and a hard place. Might be different if I had amazing results with it like some other CRPS patients do, but mine are marginal at best - we're really just grasping at straws.

Now waiting for him to come up with Plan B, C, D... or whatever it is we're up to now sad
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 4/28/2012 4:30 AM (GMT -6)   
Sorry to hear that things are still rough for you Laura. I hope your doctor will come up with a good plan for you. My thoughts are with you for some well deserved healing and rest.
Take care my friend

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 4/28/2012 6:28 AM (GMT -6)   


     Morning Laura!

         I'm sorry for all your current difficulties. You are indeed in a rough spot! shakehead   Of course we don't have any answers for you...but I can tell you that many of us have you on our minds...and pray that somehow you will get at least a little relief...and some answers to all of these problems.

     Take care,...and again our hearts are with you as you battle all of these health issues.

     SE wink

Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."
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