Don't get me wrong, I love my PM - he's stood by me when a lot of doctors would have dumped me in the 'too hard' basket a long time ago. He's held my hand, he's cried
with me, but yesterday I felt total and utter frustration with him.
Most of you know I think that I've been having major problems with back and leg pain beyond my normal CRPS pain. I had a CT scan a couple of months ago that apart from all the fractures in my thoracic spine, showed low-grade disc bulges at L3/4, L4/5, and L5/S1. No evidence of cord compression or nerve root impingement BUT of course the CT is done with you lying flat on your back and this pain is maybe 2/10 lying down, going to 9/10 when I sit.
This says to me that I've got some sort of dynamic compression going on, and my GP agrees. My entire back is very tender due both to the CRPS and to the unhealed breaks, but I've also got particularly intense pain when anyone touches my back around L5, and the pain distribution in my legs is consistent with some sort of nerve irritation or damage through L4/L5/S1. I have some residual proprioceptive issues in both legs from when my pump was implanted 3 1/2 years ago, but that's now completely shot. My lower left leg and foot keep going numb, my entire left leg is weaker than normal... I usually try to use crutches at home when I can, and that's gone out the window now because my left leg wants to drag and I've almost fallen more times than I can count.
So today, talk to my PM about
it, and he says no, not a disc - a small bulge wouldn't cause those symptoms and it's more likely due to my fractures. I know that usually he'd be right about
the bulge - usually you'd need a larger herniation to cause such severe pain and neuro deficits -
but I'm not happy with the response. The lowest fracture is T12 and it was there for a good two months before I got any leg pain. In contrast, I did 'something' to my lower back (those of you who've had back injuries - you know that feeling when something gives, you have that split second, and then the pain hits?) less than 24 hours before the onset of the leg pain - so I'm 99.9% sure that I'm right and he's wrong.
I know I have it better than a lot of people, but my life is down to my room and my computer - and I've ever so thankful for you guys. I'm having to spend 20+ hours a day in bed - can't use my crutches because I'll fall, can't use my wheelchair because it's too painful to sit. Other than medical appointments, I haven't left the house in a good four months because after 5-10 minutes I'm in agony. Meds are of only marginal help, and I am having to greatly reduce my opiate intake. 90-120mg of Oxycontin a day, plus BT meds when needed, is what I need
just to take the edge off. What I can actually take
from a practical point of view, is 60mg of Oxy and no BT meds - any more than that and my gastroparesis goes haywire. I start vomiting and losing weight, worst case scenario is I end up back in hospital as I did a couple of months ago - very dehydrated, in opiate withdrawal as well through not being able to keep meds down.
My GI wants to put in a PEG/J but I'm not sure that I do want. I know if would have its upside - it would give more scope to play with pain relief but not have to worry about
my nutrition or hydration, and it would mean that I don't have to be scared of the GP flares. I'm travelling okay weight wise, but when I have a flare that lasts more than a few days I can quite easily lose 8-10 kg in a fortnight. But I don't heal, especially if there is a foreign object there - or one has been there. The incision from my last SCS surgery took over 3 months. Just my IV sites take weeks. I'm scared stiff that this will
open my SCS and pump up to infection risk. I also struggled with NJ feeds, which makes me wonder if I'd even tolerate PEJ feeds.
Thanks for listening.
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
Post Edited (CRPSpatient) : 1/6/2012 5:06:17 PM (GMT-7)