private MRI

[Gizmok9]

so just found out from having a private lower back mri that I have several degenerative discs, bulging discs and a tear and compression of 2 nerves that I was told the urgent symptoms to go straight to a&e with as may rupture and to be referred to spinal surgeon urgently !! She said one of worse scans she had seen at my consultation!

all this after being refused point blank that I couldn’t have a mri, as no nerve involvement! and got good movement, ( I’m close to hyper mobile anyway) even got it written in last Rhumatology report! Pain service been the same, was told would need to go to complaints. Only offered physio .

all this after 20 plus years and now have reduced mobility and suffer standing too long or sitting.

So asking anyone experience with spinal referral? Still waiting on gp response, she knew I was going for scan and had agreed best way to go, even apologised that she’s not allowed to request it.

[stiff19]

so sorry to hear this, I have degenerative disc disease and had an op years back as my leg was blue with nerve compression. It's the same old story with everything not one size fits all, I waited two years before op being told to try exercise when I couldn't even stand .

Be careful of physio , it's dangerous in certain circumstances, I had physio a few years back long after op but returning back problems and suffered huge swelling and bruising and sent for urgent scan. After that I was told not to have physio but the physio ,I was told by then gp ,was something you have to go to first before referral or by way of,and he said it was ludicrous but the only way they could do it. I was referred again later to physio and luckily she refused to do anything as many symptoms along with problem and said she was not happy to do as didnt know would cause more damage as didnt know what was dealing with.

Maybe go to physio appointment and explain as this seems the only route to be seen by spinal.

My then gp was a good doc and left because of the bureaucracy of it all and said he'd become a gp to help people but up against being unable to refer people and bureaucracy made it impossible for him to do the job. hes much missed by myself and many of his old patients I know. Funny I'm undiagnosed but he suspected lupus back then years ago, but I was much better off then than nowadays health wise.

good luck and if physio is a route in, id go even if you dont have the physio. It doesn't make sense but 🤷‍♀️

🤗

[Gizmok9 in reply to stiff19]

Thanks seems anything to do with the back they want to do as little as possible now. I’m under pain physio so will say next time I eventually see him but the consultation doctor after my mri said I shouldn’t do the exercises given as I’m not to lift any weight! I Was doing a stand to sitting holding weights to chest but it was worsening pain. 🤷🏻‍♀️ pain head consultant has only ever given me a phone call. Think I may end up putting in complaint if don’t get referred next. Also it’s £300 for private spinal consultation so might start saving 😳

[stiff19 in reply to Gizmok9]

So sorry I’m having same problems in different areas now. I would consider a complaint if suffering neglect and it’s sad but it seems to be going the private way. Health care is no longer for the masses it seems . The costs are huge.

Best wishes and good luck 🤗

[KnitSewPurl]

I was seen by physio X3 out of the those twice she was late totally forgot about me ( that she had an appointment with) too busy on the computer. Then discharged me because there was no progress because I was in so much pain not only that she psychically inflicted pain on my hip when she knew the pain is there . Never really did proper assessment of hip and back during our first appointment. Said to me that she was referring back to hip team that was Jan we are now nearly end of April - 3 months . So I really don't have much hope with the NHS really .

[CavendishCool]

Ah yes. I had exactly the same experience as you. Was advised that I was an emergency, even though A&E said I wasn't and had to go home. The MRI scan man said I had a very bad back and that he would bring my scan to the attention of the Consultant Radiographer which he did and sent me to the Back Man, who was lovely, agreed that it was indeed a very bad back, yet a fantastic teaching opportunity for his students. He put me on the emergency waiting list which was 6 weeks! By the time he told me that, I couldn't bear to wait another 6 minutes. The pain like nothing I've ever experienced. All I could do was lay flat on my tummy and hope thst I'd get to the loo on time (this department was also affected and still is today). There was no more medication available to help me with the pain. In the end I rang the credit card company and paid privately (self funding) for the operation. Luckily I was only in for 2 nights. It cost £8,000.00 which I know is out of the reach of lots of people. Tbh, it was for me too, I was and am self employed and hadn't worked for 6 of the 9 months, but I really couldn't have gone on any more. From first twinge of a "bad" back to repair of the nerve that had broken free and was having a wonderful time of oki coki at L4 and L5 was 9 months, three of those spent laying in prone and travelling to the loo commando crawling which was a 60 minute round trip each time. I still have residual nerve pain in my right foot and because I was left for so long have mild urinary incontinence. However the students came over to the private hospital and learned a lot. The Consultant even trotted over after my operation with lovely bits of cartilage that needed cutting away because of what the nerve and discs were up to. The operation was a miracle. On the evening of the surgery, I walked to the loo, literally pain free. This was wait for it, 2018! I will always have a "stiff" back with mild pain and I do. My yoga practice and yoga teaching help me with that. I think if I had my time over again, I would keep going to A&E and hope they'd get fed up and admit me to hospital. The only time I went, I was sent straight home with more morphine. I am so very sorry that you are dealing with this. I do feel your pain. I hope you get it sorted very soon. Keep pestering. One of my doctors even after the MRI I had implied it was a bad back - so I suggested that she might like to swap and see how she got on. Bless you. I hope you get it sorted out immediately. 🙏

[Jerg in reply to CavendishCool]

so sorry to hear about your experience. I gave up on doctors and consultants now as no one listens anymore. They just talk over me and tell me what they assume the problem is. I live with discomfort and mobility issues, as I am tired of hearing I need to walk and exercise. also loose weight although I can barely move and my back pain is excruciating

Seeing doctors these days is stressful and frustrating and has become depressing

Hope you get the help you need and deserve

[CavendishCool in reply to Jerg]

I hope that for you too. 🙏

[Chris21]

Hi, i had an MRI last year organised by my rheumotologist, it came back that there were bulging discs all the way along the spine mainly L5/6 and c4/5 he referred me to spinal surgeon to see if i needed an op. in the meantime i self referred to phsyio who gave me gentle exercises, told me no weights and stretch only do as far as i could do without pain.

6 months later i got an appt for musculoskeletal team, at that appointment he moaned about my rheumy saying he had no right writing to the surgeon! Hewent on to say they were the first line to decide if you needed surgery. i told him i wanted other options before surgery! not sure if it was this that made him change his attitude but he then spoke in a different manner. He sounded shocked looking at my scan, he kept saying there was no fluid at all along the whole of my spine, i said what does that mean and basically its all the vertebras are subject to rubbing on each other, which can also cause compression of nerves. He was surprised i had already been to physio, then asked lots of questions about lose of feeling in legs, falling over, able to go to the toilet. I only lose balance sometimes and get pins and needles feeling, which ive had nerve conduction test and have neuropathy 🤷‍♀️. He began i could have a small piece of bone taken away at the bottom of the lumber, i asked how would that help if its all the way along my spine, he said it wouldnt, so i decided at that point i wouldnt opt for surgery, that is on the back burner for last resort. He did say not to go to a chiro as that could be dangerous if moved the wrong way and said not to do windmill movements as that will make bones rub together. my nerves do get squashed ocassionally but i am able so far to stretch and release them (i too am hypermobile)

on another point, i had dreadful pain in my hand where i kept dropping things and nothing helped the pain, had an xray, sent to physio for splint, which was no good, then onto muscoloskelatol team who said no fluid, bones rubbing together! was given a steroid injection after discussion it might or might not work, if didnt work then it would be an op to cut away bone. so far 4 months and it has worked, which has me thinking maybe a steroid jn injection in the back next? 😉 i also am wondering if sjogrens or lupus has caused this problem? it never fails to throw something else into the pot!

sorry for lengthy post. i hope you don't have to wait a long time to get the much needed help. x

[LuluM25]

I'm another sufferer of back pain, particularly in the last 9/10 months, and like most of you have got nowhere with a diagnosis that's informative or makes sense.

I've now seen a few GPs in my practice about my excruciating pain and weakness that has severely reduced my mobility and I have been prescribed different painkillers that did not help, been referred to first line physio, had x rays that show fractured vertebra, deviation of spine, inflammation of facet joints and degenerative changes in thoracic and lumbar spine. I've then seen clinic physios and recently tried a physio run exercise group, hahaha!

What I am thinking as I read your stories is how the same things I have considered are also cropping up for many of you. These are conditions that I already have diagnosed - hypermobility, Sjogrens, lupus, historic fracture of right femur and damage to right knee, right hip replacement 14 years ago and use of medical mesh in prolapse and hysterectomy ops that is known to cause many problems. The numbness that some of you mention around the 'saddle area' is a symptom of cauda equina which can be very serious.

My point is with all this information the medics already have you would think they could reveal a diagnosis, give us information so that we understand and advise us of a way forward. But it doesn't happen does it? We're left to endure the pain, get weaker and then find a new restricted and painful way of life to carry on. 🥺

[Gizmok9]

Thanks everyone, So eventually got a gp phone appointment but she was very dismissive on MRI results.. but I got a referral to the spin clinic and recons a long wait.

Also had appointment with my chiropractor that I’ve been using for years and he actually looked at my all my images and is shocked the amount of damage I actually have ! But now he don’t think there anything he can do that would help anymore as too much degeneration and bulging on nerves 😳