Spinal stenosis

[Milkybar]

Hi, I am quite new here so unsure how it all works. I have been diagnosed with spinal stenosis, bulging disc, fibro, nerve damage, problems in my knees . I knew about the disc whilst working but saw a chiropractor twice a year & kept fit walking. I'm now unable to work since my back went in 2020. Sciatica was so bad my hip swelled out I couldn't walk or lie flat. The emergency MRI results came back the day after along with all the other damage they found. I was never referred to a specialist. I was simply sent to the pain clinic who diagnosed fibro as well & put me on 499mg prolonged release Tramadol & Pregabalin.

I had an MRI on my knees rips, arthritis & other things I didn't understand. The next day physio rang promising that although they were go6to discharge me, I would get referred by gp to a rehab centre for appointments & I'd stay 3 days each time. I later found out they simply faxed my GP saying discharged due to poor outcomes.

I saw the pain clinic again 3wks ago as the tramadol has given me insomnia since the day I started it 3yrs ago. They offered injections into my spinal chord to numb the nerves & inject my knees too. I have a massive needle phobia from a childhood operation so refused. I also didn't want buprenorphine patches. He wanted to increase my pregabalin higher than the 250mg I'm on. I explained I've pretty much stopped eating as I've put 2 stone on to a size 14 & that weight is bad for my back, knees not to mention my heart.

The result is some codeine phosphate for breakthrough pain & I am being discharged next October. I am 49yrs old extremely tired due to the insomnia as they don't seem to have any other prolonged release that won't stop me sleeping. The pain is managed as long as I don't do very much & I can't walk much now even with my stick.

I do my best to stay positive focus on my grandsons 2 & 1yrr old. It is hard I feel nobody understands & only some pain is sciatic of nerve. My spine can go into spasm, dull ache that spreads, stabbing pain in my lower spine if I try to walk & really bad hip pain if I do more than small things to the point I've had to pay cleaners, gardeners.

Does anyone have any advice on anything I can do for a better quality of life where I'm not completely isolated as I don't drive & how I can sleep or anything else. I apologise for such a long message it's literally longer than a Catherine Cookson book! 😂 So thanks to anyone who's made it to the end haha.

[Kemptville]

Hi Milkybar

I was diagnosed with spinal stenosis in L4- L5 region about two tears ago. Saw a specialist who recommended a nerve block which unfortunately didn't work. Next I had a hemi laminectomy which involves removing some of the bone of the affected vertebra to take the pressure off the nerve. This gave me instant relief which was bliss. 4 weeks after the surgery the sciatic pain returned and I was referred to a neuro surgeon who looked at the post op scan and thought I had a piece of disc under my L4 nerve. I then underwent a second op to remove this piece of disc. Again the relief was instant. I am now making a slow but steady recovery.

Two things I would say to you are not to worry if you have a phobia of needles as you will be

out when they do the nerve block. The other is if you have a choice ,go for a neuro surgeon rather than an orthopaedic surgeon. I was fortunate in that I had just down sized my house and had the spare cash to go private which made all the difference. My children said they would rather see me fit and healthy than have the money I was going to give them.

I wish you all the best and hope if you push your gp hard enough he will refer you for surgery.

Kemptville

[Defenders]

Hello. I’m from the UK too and I’m sympathetic to your pain. Firstly I’ll tell you probs I have so you can compare. Severely degenerated lumbar spine and spine in general, along with 3 bulging discs, peripheral neuropathy in lower legs and feet, Axonal Sensory Neuropathy and tendon problems (and Chronic Sinusitis!). The neuropathy was caused by the antibiotic Ciprofloxacin (diagnosed), a fluoroquinolone antibiotic, the tendon problems too. I am prescribed Gabapentin which is a coverall nerve pain killer, supposedly. It doesn’t do it for me. I’d rather that than Pregabalin. Have you tried CBD oil? Some people swear by it. Just to mask the pain, not cure it like all pain meds don’t cure. I’m not diabetic, have led an active life playing squash, all the body stretching exercises, gardening (at one time we had 2.5 acres to cope with). I’m now a widow and live in a ground floor apartment. I drive and my doctor says I’m still ok to do so. I can’t stand still for longer than 2 mins and walk for about a minute longer. I do as much exercise as my body can cope with. I cannot give you much help but now you know that you’re not alone in this. Very best wishes to you, and keep smiling xx

[garynova]

I didn't have a problem with it, it just didn't do the job it didn't touch the pain

[MalcolmCClark]

HiI had similar issues and after a lot of pain killers which includes morphine I went under the knife and had a spinal decompression to take the pressure off the nerves.

If you can be referred to a spinal orthopedic surgeon then you can ask if surgery is an option.

List all the things you have put in your article here as I think surgery may be the best solution for you.

I have no regrets having mine. I believe another forum reader above had a similar surgery option above so if you are ok going under the knife it's worth considering.

Oh as for pain clinic I have it in writing that they never wish to see me ever again because I refused all the drugs apart from morphine.

I have bad reaction to the drugs and because of heart and liver issues can't take the drugs anyway.

So stand firm and get referred.

If no one listens go through the complaints process such as PALS

Good luck

[costabuck]

Hi Mikkybar

Like yourself, I've been dealing with chronic pain and had over 21 procedures over the last 28 years. This started with an accident in work and then a consultant made a complete mess and caused my back to be so much worse and continue to go down hill basically. I won't go into details, unless yo want to know, but its been a long battle with some positive and negative things happening along the way.

Anyway, we are always hear to listen, to share and to understand.

I take tramadol as well as other drugs. They are strong and highly addictive. However, as someone has said, it's better to see a neurosurgeon not orthopaedic to get things sorted. Also, getting the right medication is important but ask your GPS about pain clinics or residential pain clinics where they give you techniques to manage your pain.

If i can help then please message me

I do hope you get some results and wish you all the best.

Kx

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi Milkybar,

I am a forum moderator here at Pain Concern, and have been reading through your post, I am sorry you are having to deal with so much.

Here at Pain Concern there are some resources that you may find helpful. One of those resources is the Self-management Navigator Tool which may help you with healthcare appointments. If you click on the link below it will take you straight to the relevant page.

painconcern.org.uk/the-navi...

There are a number of leaflets that are web based and available to order.

painconcern.org.uk/product-...

Pain Concern also produce a quarterly magazine that covers a diverse range of subjects that are associated with pain. you can subscribe to these or pick out back publications that are relevant to you. There is also a great podcast called Airing Pain. Again you can click on the link and search for the podcasts that are relevant to you.

painconcern.org.uk/product-...

painconcern.org.uk/airing-p...

I hope tis information will be of help to you.

Best wishes

Pain Concern