Don't you just love when doctors agree with each other.../general vent

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.

Laura

Hi Laura, sort of seems like if its not one thing its another. My question is what was the drs thoughts on one leg being much stronger than the other? Very early on with my lower back I had a lot of episodes of nerve root irritation and had some numbness in my foot and big toe. I did not have a pinched or compressed nerve. I was put on a short round of steroids and that always brought it under control. The pain that I had during these flare ups was just incredible. Back then I just had a bulging disc and was told the same thing and since then seen drs all sas bulging disc do not cause pain, that seems to be their general consensus. Honestly, I do not know how you can sit, that just puts so much stress and strain on the spine, so I understand how you can get a 9 on a pain scale.

Is there a particular reason your dr will not order an MRI? I know about your pump and all but here in the states people with the pumps are able to have MRI's with their pumps. Medtronics says their pumps are safe for MRI Scans. I was at a facility having some xrays done and spoke with the MRI tech about pumps and she was the one that showed me the book from Medtronics and all. Would there be a problem with your SCS unit?

I hope some how you can get yourself to feeling better. Take care.

Kaura

So sorry to hear your having such a hard time managieing your pain. You have been such a support to all of us and I pray

that a doctor will be able to help you so you have a good quality of life.

Please keep in touch with us and let us know how you are doing

Betsey

Hi again Stray and thanks for the info I've got both Baclofen and Bupivacaine. The Baclofen for my dystonia and spasms, and the Bupivacaine actually helps a lot with the burning pain - I'd no idea it was only intended to help with meds adhering to receptors like you've been told!

I'm not sure what the concentration of the Bupivacaine is offhand but I've had it in the pump for maybe 2 1/2 years at the same concentration. The numbness is pretty sudden in onset - and only since the pain in my lower back got worse. It's not there all the time either - it's worst when I'm stuck sitting - e.g. in the car when I can't move - and I pass through pain and start going numb.

I have a lot of respect for my PM, but I'm certain he's made the wrong call on this one. I know he's the doc (though if he really wanted to argue the point, I'm one too...), but I spent enough time at uni studying neuroanatomy to have a good idea of what I'm talking about. The big difficulty I'm having is as I said - that the CT showed the bulges, but no cord or nerve root compromise. I think from that, he's trying to argue that they're likely to be an incidental finding rather than the cause of the pain.

What I've discussed with my GP and my physio (who specialises in neuro disorders) and what the three of us believe - is that because there is so much more pressure on the discs when you're sitting as against lying down, that those small bulges ARE impinging on something when I sit. The difficulty is just working out how to show it and what to do about it. I think I'm going to talk to my GP again this week - he did offer me another CT when I saw him last week to see if anything has changed in the two months since the last scan and I decided I'd speak to my PM first. I'm sure he'd also sort out a referral for me too if I asked. I'll say it again - that I know I've got it a lot better than a lot of people, but I'm pretty close to non functional at the moment. I'm getting maybe 2 hours of broken sleep in 24 and if not for you guys and a handful of other friends online I'd be insane.

Laura

     Laura,...can you believe I finally made it here to comment!

         ......not a lot to add, but know full well what your talking about sitting and feeling more pain that way. I think I have said, you can see a pain scale that can change several times a day this way....mine does.

      Just keep plugging away with your Dr's and maybe they will get the right diagnoses...so that you can be treated properly. I did read that patients can now get an MRI with the new model of pump. However the SCS unit prevents that it appears.    

   Take care,

        SE