[Mairi]

Hi all,

I have L5-L6 and L6-S1 fusions (I have an extra lumbar vertabrae) performed seperately a few years ago after years of pain following L5/6 herniation and microdiscection. Even after surgery I still have significant lumbar pain and have been unable to return to my active sporting life. On top of this I have a chronic axonal sensory neuropathy caused by a neurological antibody, so unrelated to the back problems. I use a crutch to walk.

12 months ago I had a followup scan as I was experiencing neck and mid back pain in addition to the lumbar nightmare. There were mild bulges of the C6-C7 and T11-T12 discs. At the time my neurosurgeon was happy to continue with a conservative treatment approach, but did mention the possibility of fusing the thoracic joint if not resolved.

After a followup scan this week the bulges are still present and my pain is, if anything, worse. The scan mentions in addition a focal right foraminal L5-L6 disc protrusion (!! the disc is removed!!??) and narrowing of the ipsilateral intervertebral foramen, and facet arthrosis at L5 to S1.

I have two questions: Does anyone else have experience of this sort of report after lumbar fusion and at what stage of pain and/or herniation has anyone had thoracic fusion?

Thanks for any comments,

Mairi

___________________________

1997 - bilateral carpal tunnel decompression after pregnancy
2010 - L5-L6 discectomy after posterior disc herniation
2011 - L5-L6 ALIF
2013 - L6-S1 ALIF
2015 - diagnosed chronic axonal sensory neuropathy, awaiting treatment options

[jenng]

I had a L5-S1 fusion Sept. 2013. Lately I have been having a lot of issues with what seems to be back and abdominal muscle weakness. Doing a few hours of "normal" activity (not exercise) makes these muscles feel like I've done a huge workout. Also having tightness in my neck and shoulder issues. I've seen my regular neuro and an orthopedic specialist, and no one is in any hurry to repeat MRI's. They've sent me to PT, so still doing that. And started going to a chiro, who says based on my cervical spine CT in 2011 I do have issues C5-C6 down.

What antibodies do you have for the neuropathy? I've got axonal sensory in both legs (motor some too on the left.)

Hope to hear from you!

[Mairi]

I have IgM GD1b antibodies - it's a chronic axonal neuropathy that's rare and there's no standard treatment due to lack of clinical trials. I see the new neurologist next week. I'm guessing I will be sent for a lumbar puncture (will be requesting sedation for that thanks!!) and possibly nerve and skin biopsies. I'm hoping to qualify for IvIg in tandem with immunosuppressive drugs. Currently I'm taking 300gm Lyrica, 10mg Loxolate and a ton of slow release paracetamol (with coedine at night). I'm still working full time with a very understanding employer LOL

In terms of my spine my neurosurgeon says the fusions are well consolidated and no surgery is needed for the foramen and facet arthrosis as they aren't impinging the nerve roots - meaning the sciatic pain is part of the neuropathy. We discussed fusing the T11/12 but have decided against it at this stage & will revisit after I've seen the neurologist & know where I'm heading re the neuropathy.

I did PT, chiro, acupuncture & massage therapy before my neuropathy got so bad I can't stand the touch, but found it very helpful at the time. Hope you find some relief! What antibodies did you have?

Mairi

1997 - bilateral carpal tunnel decompression post pregnancy
2010 - L4-L5 microdiscectomy
2011 - L4-L5 ALIF
2013 - L5-S1 ALIF