Spinal stenosis, compressed nerves

[Scott-rock]

I’ve recently been diagnosed with severe spinal stenosis and degenerative disc disease. It worse on my Lumber Spine where it’s compressed the nerves on L5 S1 and S1 with T12 L1 and S4S5 also badly effected. My C-spine is bad atC4-5 with others also effected.

It’s obviously the reason I’m still getting pins and needles numbness etc .

I’m still waiting for surgery dates, but am maintaining my EOD b12. As I hope it will protect the compromised nerves.

Anyone else had similar issues? I know it’s not all caused by the pernicious anaemia as I had an injury when I was a kid.

I had osteopenia three years ago but that has started to improve following parathyroid surgery.

[Dilly_blue]

So sorry to hear this, it all sounds extremely painful. I have spinal issues (but unrelated to B12D), including congenital spinal stenosis in one part of my spine (I was born with it, but it didn’t become a problem until my late teens). I did not have surgery, but I have since had steroid injections under fluoroscopic guidance, into my spine / caudal region, which really helped. I had this done two times, in my 30s and 40s. It was an NHS pain management consultant that did this for me, and it is not very invasive (you only need to spend about 6 hours in hospital). Perhaps you could ask your consultant if it might be something that might help you, in the meantime, in case there is a very long wait for surgery?

I also have autoimmune / inflammatory problems, but find (perversely) that these seem to get worse after B12 injections!

[Scott-rock in reply to Dilly_blue]

thanks for your reply, funnily enough it’s not so much painful, as it is numb with pins and needles most of the time. The pain comes when I stand too long like doing dishes or cooking, and it starts in my back and goes round my left hip and down my leg. That’s when I cannot stand. It was actually even worse before I had an inguinal hernia fixed as that was like getting stabbed on top of it. That would drop me to the floor.

I was originally referred to the surgeon for my C-spine damage as an urgent matter. Only to find my lumber is even worse. My next appointment is the end of the month, so hopefully get a date then.

[Confused01 in reply to Dilly_blue]

Hi,

I have cervical stenosis, and lumbar issues too.

I’ve been to nhs pain management, after a very long wait and point blank refused injections to help my neck stenosis sighting all sorts of, tbh, feeble reasons (not all medical tbh).

I was shocked to get a point blank ‘no help’, not even a suggestion inwards. It was a spine specialist that suggested so I am at a loss.

Did you have any difficulties getting the injections? Who referred you to the pain clinic?

Did you have to got through physio, talking pain clinic etc first?

Thanks x

[Dilly_blue in reply to Confused01]

I’m so sorry to hear this. It was my NHS rheumatologist who referred me to the pain clinic (I also have autoimmune issues as well as stenosis). This was many years ago, though; first time 2008-2009, second time around 2014. I wonder whether there has been a shift in when it is considered appropriate, or if the numbers of procedures have been reduced due to budget pressures?

[Confused01 in reply to Dilly_blue]

Hi,

Thanks for your reply.

I do wonder if it’s a money saver but what’s the point in having a Pain Clinic (for possible procedures, not talking pain clinic) if they know the diagnosis and give a no help scenario.

My referral was via a spine surgeon and would be far more qualified than the Pain Clinic Dr.

The non medical excuses were at best insulting to any patient’s intelligence.

Nowhere to go now for help 😢

[Dilly_blue in reply to Confused01]

Perhaps you could write to the pain clinic consultant, asking for clarification as to why you are not able to have treatment, and to identify what steps you need to take to access appropriate treatment. I imagine it is much harder to fob somebody off in writing, so you may get more detailed answers. Do you have any information from your referring spinal surgeon as to what interventions they thought would be helpful? (Ie something mentioned in a post clinic letter)? If so, you could include a copy of that letter in your letter to the pain clinic (and if so, maybe copy in the spinal surgeon to your letter?). Good luck…

[Confused01]

I certainly intend to. I have the referral copy etc.

Won’t hold my breath though. My area is renowned for not so great care.