Nerve damage and back pain - help or advice needed

[Leiimarii]

I have had 5 spinal operations, and have a fusion from L3 - S1, my last operation was about 6 years ago.I have considerable nerve damage in my legs and feet, plus constant lower back pain.

It’s been steadily getting worse and now I have upper back pain, neck pain, loss of sensation in my groin, shooting pains, numbness and weakness in my legs and arms.

I can’t take opiods anymore, they make me very sick and I can’t work properly on them. I’ve had all the anti inflammatories there are, nerve painkillers put me in such a fog I can’t function.

I spoke to my GP yesterday and he told me he can’t do anything, nothing at all.

I’m waiting for the results of a recent MRI and to see the spinal physio, again.

Does anyone have any suggestions or advice on what on earth I can do? I’m so exhausted pretending everything is ok all the time.

[Betsy50]

Hi you need to go to a&e if you have loss of sensation sounds like cauda equine syndrome !!!

[Leiimarii in reply to Betsy50]

Hi, I was at a&e 4 weeks ago as my doctor was worried about cauda equina but the spinal specialist and I agreed it wasn’t likely to be that (after examination) so they’ve since done an MRI which I’m waiting on the results of.My gp is calling me back this morning as the pain is now at the stage where I don’t care what the side effects of painkillers are, I just need something for it.

It hasn’t been like this since before my last operation so I don’t know what’s made it deteriorate so quickly this week.

My gp only offers me amitriptyline, gabapentin and pregabalin for the nerve pain but i’ve read that tegretol is an option too. I’ve never been offered that so I don’t know if there’s a reason?

[Betsy50 in reply to Leiimarii]

Hi just be very careful I was let down by my consultant and ended up with incomplete caud equina syndrome. I changed to duloxitine tablets and they have slightly calmed the nerve damage on my foot. Take care

[Leiimarii]

I’m so sorry to hear that. I will be honest, I am quite concerned at how rapidly it’s going downhill at the moment. I will see what my gp says about painkillers but I’m also waiting for the specialist to call me as I told them yesterday I needed an earlier appointment so fingers crossed.

If it gets worse I will go back to a&e

[Betsy50 in reply to Leiimarii]

Hi yes you have every right to be concerned its red flag stuff !!! Whatever you do dont go on morphine I was on it 6 years then I decided to taper off them the brain fog was horrendous. Where are you based ? If you dont mind me asking. I'm in scotland. You take care and hope you get some relief for your pain.

[Leiimarii in reply to Betsy50]

I’ve had morphine before and it was just awful, i felt like the living dead! And it didn’t actually kill the pain anyway. I’m in Southampton. I haven’t lived here long and this is my first real experience of the doctors here and so far, I’m pretty unhappy with them.

My old doctor in Dorset was fantastic

[Betsy50 in reply to Leiimarii]

Hi yes I agree I was a totally different person on them I will never ever go back on them. I've had back surgery on L5 in 1999 never been the same since then. Diagnosed with fibromyalgia nt so long ago after years of disputing it with gps. Stand up for yourself with these doctors you really need to nowadays. My mother in law passed away early this morning with sepsis so sad

[Aberdeengal in reply to Betsy50]

Hi There I am in Scotland too. I hear you about morphine I was on MST 30mg twice a day and Sevredol for in between. I tapered down and eventually stopped both. OMG no fog!! It was amazing. Two months later a simple hour car journey and the back went. Severe pain and guess what back on mst and sevredol. I have a spinal cord simulator to help with leg and foot pain but where this pain has come from I just don’t know. Seen doc after doc and I just get thrown a load of painkillers. So it’s back to the fog! Are you off morphine now?

Take care

Dawn xx

[Lacielou]

Hi I had a burst vertebra which was pressing into my spinal cord and was told if it deteriorated any further it would paralyse me. Had a cage put in but my left leg got paralysed during surgery got some use back but back pain is as bad as ever.

[Mitch48]

I can’t believe that it’s taking so long to review an MRI scan when you have red flags for Cauda Equina (groin symptoms/weakness in legs) & other spinal conditions (possible Spinal Stenosis/Disc Prolapse etc) with weakness in your arms & legs. I’ve had extensive lumbar surgery (L3-L5) following Impending Cauda Equina & Spondylolisthesis (2 vertebrae). I had a private Zoom consultation with my Neurosurgeon last year & had emergency surgery (3 Foraminotomies/3 Laminectomies/2 Discectomies/Posterior Interbody Fusion) only a couple of days later.My spinal injuries began in my cervical spine 18 years ago following a road traffic collision (2 x ACDF’s followed). I’ve had numerous problems with my cervical spine/Cervical Radiculopathy at 2 levels/Cervicogenic Headaches etc.,my pain clinic consultant told me that because my neck was so badly damaged the bottom of my spine would be too, he wasn’t wrong. Spinal stenosis in your cervical spine or in your lumbar spine could affect your limbs but you’ll be aware of that no doubt with your experience of lumbar surgery.

If you have the resources then a private appointment with a Neurosurgeon would mean that your scan gets reviewed the quickest & likewise receiving a diagnosis. It would give you piece of mind if no other. Otherwise you would have to wait for the results to get back to your GP or the person who ordered the scan in the first place.

There are referral pathways produced by Neurosurgeons/Spinal Surgeons, helping GPs deal correctly with patients who present with certain spinal symptoms, including Cauda Equina etc.

A second opinion with a different GP may help otherwise to speed up the results, as you may need to obtain a referral to a pain clinic consultant or a surgeon.

Good luck.

Kind Regards,

Mitch.

[Sydney75]

Perhaps a spinal cord stimulator would help, most do a week trial outside the body before it is implanted.

[Leiimarii]

Just an update on where I am now. The consultant is happy with my MRI and that it’s normal for me. He has referred me to pain clinic for management.

However, since I spoke to him my back has gone into spasms and keeps seizing up every time I walk. I am leaning to the right and walking around in absolute agony.

My GP has finally put me on 3 x 50mg of pregabalin daily, naproxen 2 x 500mg daily and co-codamol 30/500mg 4 x daily. It’s doing nothing to help the pain.

I saw a GP in person yesterday who didn’t even look me in the eye when she told me that she isn’t happy I’m on such “high” doses of painkiller as they’re all strong, controlled drugs. I tried telling her that I’ve been on a lot more previously and it isn’t helping the pain. I’m now using a walking stick as I can’t stand up straight, the pain is unbearable.

She wasn’t interested, I left there in tears.

I don’t know what to do and why it’s flared up so badly. I’m thinking of asking them to refer me for a wheelchair it’s gotten so bad.

Also, I asked if they can write a letter to accompany my PIP renewal and my blue badge renewal and she said they don’t do that. All I can use is my medical record (which is incomplete as 2 of my operations are missing from it and at no point does it talk about mobility problems). I only get daily living PIP as I just didn’t have the energy to appeal against the mobility component last time so I don’t automatically get a blue badge.

I’m so upset at the moment and depressed and I just feel like no one is listening to me or interested in the fact that I’m in constant agony. I’m still trying to go to work but I’ve even got to the stage where I drink less so I don’t have to walk to the toilet so often as walking is so painful.

Can anyone advise me on what to do? I’m so lost and feel like my GP just doesn’t care

[jpbuk1204 in reply to Leiimarii]

Hi, there is a website called benefits and work and gives you good guidance in claiming pip etc. They have loads of pdf books, form a, templates as part off membership. I won an appeal using terminology and legislation and case law they recommended.

[wotamess in reply to Leiimarii]

So sorry you are going through this, have you considered getting a second opinion? A referral to a different consultant?

[Sorohan]

Have you been referred to Pain control clinic at your hospital

You need to be referred by your G p