Any advice on back problem?

[angemorange]

Posting this to see if anyone has any advice - my DP has three perforated discs in his back and the sciatic nerve is caught round one of them leading to extreme pain and flare ups. Our GP has said that operations on the back are very hit and miss and there is currently a two year waiting list even to see a consultant, with very few people even referred for surgery. At times he has been to A & E with the pain but they say there is nothing they can do apart from prescribing co-codamol (moderate strength) at times when he is in severe pain. Outside of that moving around every day, going for short walks and a hot water bottle are all that helps. It's really hard seeing him in so much pain but I'm lost as to where we could go next? Any advice welcome! (No money for private unfortunately)

The NHS is bloody disgraceful with chronic pain. It's a nightmare. First thing they can do easily is give him some proper pain relief - I am on opIates for my chronic pain condition and could not function (get up, walk, move etc) without them. Is he actually on the waiting list now? Aside from keeping on at them I'm not sure what you can do - he's going to end up in a far worse position if this continues. I am so sorry.

Thanks for your reply - he really feels he is running round in circles from GP to A&E and getting nowhere. He hasn't been referred - he was at GP today and was fobbed off again. The only thing I can think of is going with him and refusing to leave until he gets a referral - probably end up getting arrested lol So sorry to hear about your pain - sounds like you had a long battle too.

I had similar, they wont really take the issue seriously unless you are experiencing loss of sensation from continued compression of the sciatic nerve. I had that after 10 months of being fobbed off - I lost the reflexes in my ankle, got numb toes, calf and thigh skin and started to get numbness of the genitals.

This is called Cauda Equina and only then did they take me seriously - I was operated on within 4 days to detach the sciatic nerve and clean up the disc material from the area that was also compressing my spinal cord.

I did the trick, I now have no back pain as long as I keep reasonably active and dont sit down too much. I still got the occasional flare up afterwards but on the whole 7 years later I am sorted. The numbness never went away though as the nerve was badly damaged but I can live with that.

Just look out for numbness or loss of sensation. If he gets that go to the GP or A&E straight away and they will take the matter seriously. Good luck, I understand only too well how much back pain can ruin your life.

Yes, 22 years of pain now, diagnosed 13 years ago and been on opiates ever since then. My condition isn't curable but I've had many surgeries and other treatments to no avail. It's awful.

If you could scrape the money together for a private consultation, they could possibly add you to their NHS list (I've had it done in the past) or at least write a report and recommendations that you can take to your GP to insist on a referral. The waiting list being so long is a reason to refer asap, not fob off your patients. He could also consider writing to his GP and sending a copy to the practice manager saying he is concerned his condition isn't being taken seriously and that it may lead to longterm disability if not dealt with.

What Ask said ^
I had a 15mm x 10mm herniated disc which caused nerve root impingement. I was referred for surgery as it had herniated so badly. Anyway 30hrs or so before the op I was diagnosed with cauda equina so thankfully great timing! Had surgery, took them nearly 5hrs to decompress all the nerves and remove part of the disc
I couldn't do a straight leg raise at all, was numb from back to toes

Can he ask for referral to pain clinic or neurosurgeon? I did it an odd way after 7 years of sciatica! Went to physio who refused to treat me further (after 5 sessions) until I had an MRI. She sent me for one, and they sent me to a neurosurgeon

Thanks for all the replies - good to know he isn't the only one getting fobbed off! I'm going to take all those ideas on board and talk it through with my DP. He's just fed up - every door seems to close in front of him!

The physio was my saviour! To be fair to a&e, once they saw how many drugs I had taken and I was still threatening to cut my own leg off, they supplied oramorph speedily after seeing the MRI scan. I think the words "how are you still walking??" were used

Even getting an MRI scan is impossible - my DP had one when he first had his injury (a couple of years ago) and his GP has said only Consultants can request them now - another merry go round - so we can't even know if there has been further damage or if things are the same.

Ollivander - what a great physio!

A physio definitely can, I was referred by her in May this year after she realised my GP wasn't going to, she thought something was badly wrong and she was right. I owe her an awful lot

I was exactly the same as Ollivander. I had an excellent physio who could see that it was a bad case of sciatic nerve impingement and she organised an MRI scan. By the time the scan had been done I was starting to lose feeling. The scan picked up a number of 'red flags' and I was called in urgently. The consultant also said that I was very much at risk of being left unable to walk - he put me on his surgery a few days later. It was right before Christmas so I got upset as my children were small and I wanted to postpone it - he said if I were his wife he'd insist I had it done.
I know it's a bit naughty but could he say he's getting numbness....

How long has the sciatic pain been going on for? Operations for sciatica are effective in the right group of patients but it is true that a lot of patients with slipped discs don't fall into the group that benefit. As a general rule, removing the disc can help leg pain (i.e. the referred pain down the leg) but not back pain. Sciatica resolves by itself in most patients and only a tiny proportion end up requiring an operation.

A&E isn't the right place for this unless the concern is cauda equina syndrome, e.g. urinary symptoms, faecal incontinence, altered sensation around the genitals/buttocks, or severe weakness of both legs.

The guideline that your GP will be working to is available here and might be worth a browse.

I would not make up symptoms as suggested by @Askanastronaut. Numbness itself won't usually prompt an MRI. Symptoms of cauda equina syndrome (e.g. numbness of the genitals) might and this will cause someone else to lose their slot as each scan takes 30+ minutes and there is rarely extra capacity in the scanner. When they see that you don't have cauda equina syndrome, you'll be no further forward anyway. If anything, symptoms that don't correlate with abnormalities seen on the scan would make a surgeon much less likely to recommend an operation.

If he has had this more than a few months, tell him to go to GP and insist on a referral to a consultant and to a specialist back physio if there is one in the area. I had this and was cured by an op. I was very much against having an op. but it was the best thing I did.

(It is true that medical staff often don't believe how much pain you're in until they see the MRI and realise that the spinal cord is completely compressed in more than one place.)

He could get better pain relief too -- I found that voltarol was better than cocodamol.

Thanks for all the replies folks - he has been given some guidance on numbness etc - if he gets those symptoms he is to seek medical help straight away. Main thing at the minutes is getting proper pain relief I think and maybe a referral to a Consultant even if it takes a long time.

Have a look at the NICE guidelines for lower back pain and neuropathic pain in adults. I would go back to the GP armed with them - there are lots of things they can prescribe to help, and it doesn't seem like they are doing the best for him.

I have neuropathic pain constantly and sciatica occasionally and typical painkillers only help so much. Medications which help nerve pain include amitriptyline, nortriptyline, gabapentin, pregabalin and duloxetine. It took me a while to fine one that suited me as they have some side effects, but they do help enormously. Physio is a godsend for me as well. Hope he gets some relief.

ive just been offered tpi injections and im on slow release morphine and nortriptyline for chronic back pain (facet joint problem )
and will have intense core physio once i've had the injections.
im under the chronic pain service and had no problems getting mri ,i guess it all depends on your hospital /gp
i would push for referral and better pain management , we have a musculoskeletal specialist service who organise scans ,consultants etc..and refer on very quickly.

GPs are so rubbish with back pain. I had an inflamed disc pressing in my sciatic nerve so not as serious but still agony. Physio was brilliant and they can refer for scans.

I know it is expensive but if you could just try and find the cash for one appointment you could get a proper plan of action. GP to A&E and back again must be so frustrating. It's not acceptable to be in agonising pain constantly.

GPs are bound by local pathways that will have clear rules about who should and shouldn't be referred for MRI/physio/surgery/etc. They are not making it up as they go along. Whether or not physios can refer for MRI will also depend on local arrangements.

The general trend is towards GPs referring patients to a "musculoskeletal service" (often run by physios but overseen by a spinal consultant) who can arrange scans and pick out patients who might benefit from a discussion about surgery.

These decisions are not taken by individual GPs - they are determined by clinical commissioning groups and are very much a part of cost rationalisation (or rationing - depending on your perspective).

I get that but after years of my back going once a year and being given drugs and not offered an MRI once... I actually ended up having a scan in a&e due to the pain level.

The minute they saw it they said it needed surgery and that was before the cauda equina. I had been back to my GP and explained it wasn't my "usual" sciatica but no luck. Physio tried everything she could but after I limped in worse than ever she said enough is enough

Cauda equina was v v subtle for me, I got into bed and it felt like hot water running down my legs. That was it. I was already completely numb and unable to lift my leg, no reflexes, foot drop etc

I'm sure Gp's are bound by 'local pathways' which makes them inefficient. If you're in agonising pain you can't wait months to be referred and quite frankly apart from prescribing drugs they can't help.

I'm lucky to be able to afford the £40 for a private physio. Who I saw the same day the injury happened. But why, if you can't afford that, do you have to wait for months? Gp's can't help. They are not specialist in this area.

I know you said that you don’t have money to go private, but in case that changes at all I just wanted to recommend Rolfing as a treatment that can help many people with back pain when other more conventional treatments have failed. Here is a link in case you are interested www.rolfinguk.co.uk

Some good advice here. I'd agree with:

go private if you can afford it
get a good physio on board
if you can't lie (I can't) you can exaggerate

I broke down in tears and was moved up the list and had surgery after only waiting 10 months (slipped disc causing agonizing leg pain on both sides). The nerves haven't recovered 100% but I am a lot better. The younger and fitter you are (I was neither) the better the results but yes surgery is a bit hit and miss and best avoided if you can. I get by with paracetamol, ibuprofen and codeine. Despite my history my GP practice will not prescribe diazepam so I have had to call out emergency services twice to ease up a back spasm.

Personally I don't like tramadol or morphine but I am a lightweight for drugs - lots of people can't get by without them.

Good luck!

Thanks for all the wonderful advice - I'm going to suss out private consultation costs and also see if physio or pain clinic referral could be an option. Thanks again to everyone who posted!