Sitting down / standing MRI?: Has anyone been... - Pain Concern

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Sitting down / standing MRI?

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32 Replies

Has anyone been able to get one of these, in the UK under NHS?

I argue all the time that the MRI results, would look a lot worse, and laying down doesn't represent what I go through.

Currently MRI shows 4 bulging collapsed discs in lumber, a couple of the same in my neck with stenosis and severe arm/hand pain. I have 24/7 sciatica in both legs.

Miraculously my lumber stenosis after 20 years, has vanished‽ I know!

Any help n suggestions would be greatly appreciated 😁

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johnsmith profile image
johnsmith

Not sure what you are asking?

Macblank profile image
Macblank in reply tojohnsmith

An MRI machine where you can be sat or stood up.

I know some places do machines where extremely obese people can sit in the middle of the MRI machine.

Google it

in reply tojohnsmith

uprightmri.co.uk

johnsmith profile image
johnsmith in reply to

Thanks for the link. The machine looks wonderful. I have been in a tube MRI scanner. It is not quite fearful, but close to it in the closed space.

I've only ever had the tube ones, laid down and all the way in. I can't see there being any difference in the results though, the scanner is still doing its job by scanning your body, if you're sitting or standing, everything is still the same, has the same body weight around it etc. Are you actually wanting worse results than those you already have? My results are similar to yours, so I know the pain you're having.

Have you ever asked for your full health records? They're now free, providing it isn't for any reason like proof of disability for the DWP, EG for your own records ;) I've asked for mine, I'm sure they only tell you half a tale when they give you results of tests and scans etc.

Another thing, have you ever been referred to a pain clinic? One where they offer a variety of treatments like injections and nerve blocks. I only ask because I was referred for arm/neck/head pain 6 years ago and was offered occipital nerve block for it. Since then I have had them bi-annually and the pain I got in my arm has diminished by 90%, migraines 99.9% gone!

in reply to

This is a really helpful post. Thanks so much.

In severe pain with advanced Cervical Spondylosis, that has upped its game in the last couple of years. Under Pain Clinic. I now have some loss of bladder control, headaches, loss of balance and so on. Have had the condition for many years and for the first few decades managed well without pain control, but now really struggling. I was put on Tramadol a couple of years or so ago, and then patches. Breakthrough pain very severe indeed. My GP told me there was ‘nowhere else to go’ with pain management. I persuaded her to give me a referral to the Pain Management Clinic at St Thomas, London, as I’d read an article about it in the press. I did the two week residential course but it was CBT based, and of little help, and having had arthritis and FMS for many years I was already pacing, exercising etc. The course was a huge disappointment. Interestingly, 10 other people on the course ( a group of 12 very upbeat people - we spent the evenings going for meals, and to the pub on several nights, and just had a laugh, which I think was good for all of us ) also found the course largely unhelpful. A good spring board for ‘beginners’ in some basic but important pain management strategies maybe, but not much good for those of us further down the road... I hope things have improved since I did the course. Incidentally, I was a teacher, but did eighteen months of a psychotherapy course, as I was thinking of changing career, and I was pretty horrified at just how poor the psychology side of the residential course was. A great shame, as many people pin their hopes on such courses. They are definitely not the Holy Grail of Pain Management.

in reply to

Have you thought about asking your GP for a referral that the National Hospital for Neurology and Neurosurgery, Queens Square, London. I had fantastic treatment there for C6/7 radiculopathy. I was in great pain in my left arm with tingling and numbness in my fingers. Following MRI and Nerve Conduction Tests, I had C6/7 foraminotomies that instantly removed my pain.

in reply to

Really appreciate your reply. My Rheumatologist ( at the hospital next door, on Great Ormond Street!) wrote to my GP referring me there. She said it wasn’t worth bothering. In the light of your reply I will now go back and be a little more assertive, and ask for that referral.

in reply to

I would do that. I guess you were at the National Hospital for Integrated Medicine on Gt Ormond St. I had some acupuncture and my nerve conduction tests there. My surgeon at NHNN was Mr Choi. He only does neck surgery and is excellent.

in reply to

Thanks. I really appreciate that info. Mr Choi.

And yes you’re right. I went to the Integrated Hospital - full of hope. But sadly it didn’t really cut it. I thought it was going to go down a Functional Medicine Route, a sort of NHS version of Sarah Myhill? Very disappointed. The acupuncture sessions were 15 minutes, and my travel time just over 3 hours. Brilliant physio there, though.

Macblank profile image
Macblank in reply to

Hi Jane

Thank you for youre lively reply.

Yes my weight is the same, but when laid down the distribution is different.

I'm with the pain clinic, have been on/off for years.... Now back again! I had 16 nerve block injections in my spine e years ago, and apart from the initial pain (from 16 jabs into an angry nerve) and once that went down to normal levels, I had no releif or even no lowering of the pain scale. Not sure what they use, but when I had I jections on my knees that didn't work either.

I even did the accupuncture, but no relief either.

I feel exactly the same as you. My sciatica is worse in the evening when I believe, due to gravity I suppose, my discs must be bulging enough to see where they are causing the problem. I asked for an upright MRI as all my pain goes away when I lie down therefore my discs are not touching anything to cause pain when I lie down. I was told they would be able to see all they wanted on the usual MRI. My scan was at 9.00am! Later in the day would probably have shown more. Upright MRIs are not available on the NHS, certainly not where I live, Wigan. My GP is happy to refer me for an private upright MRI. There are a couple of companies nearby who do this for £550. At the moment, I am having injections in my back at the pain clinic every six months and I take Co-codamol and Gabapentin. Please let us know how you get on. I completely understand you. Good luck.

hosbay profile image
hosbay in reply to

I agree with you that the dynamics of the spine are different depending on whether you are upright or horizontal. When you are upright ore than half of your body weight is pressing down on your lower spinal sections so if there is wear in the structure (e.g. facet joints) or degeneration/deformation (e.g.bulging) in the disks then there will be increased pressure on tissue surrounding nerve roots, etc. Degeneration causes the disks to become less able to absorb pressure and movement and will also result in less clearance space between joints. Like you my sciatic pain increases as the day goes on and by late afternoon/dinner time I generally have to lie down to reduce my sciatic pain. The pain also tends to tire me and usually when I lie down I quickly doze off into a very deep but brief sleep. When I wake up I invariably get a strange pulsating sensation in my lower leg but when I get up (say after half an hour) the pulsating sensation disappears and my sciatic symptoms have reduced. To date none of the medical practitioners I have seen have been able to explain my symptoms. I have suffered from chronic sciatic pain for over 4 years now. I have had all forms of medication including paracetamol, tramadol, cocodamol, morphine sulphate, amtriptilyne, gabapentin, etc none of which seemed to help. I have also had cortisione injections, caudal infusion and an exploratory/decompression operation (L5) which also did not help. The orthopaedic consultants/surgeons I have consulted with said there was no clear sign of impingement of my sciatic nerve root but there were signs of degenerative disk disease, slight disk bulging and reduced clearance between joints. The last time I saw an orthopaedic consultant (2 and a half years ago) I asked him if an MRI scan with me standing up could reveal a more accurate picture and, perhaps diagnosis. His answer was that he did not think so but I disagree.

I do not take any medication at all now for my sciatic condition. I was referred to pain management and eventually I have been told that I am on the waiting list for a spinal chord stimulator (scs) implant. I have been self-managing my condition with a mixture of various forms of exercise and relaxation/ mindful techniques with what appears to be a reasonable amount of success. I am fully mobile and active and I probably will not accept a spinal implant when I am offered it so long as my condition does not deteriorate between now and then. scs seems to be very effective in suppressing sciatic symptoms but I feel that if pain is suppressed there may well be a risk of performing activities which make the pain source condition worse (e.g. causing more extensive damage to the sciatic nerve root).

in reply tohosbay

It's so refreshing to read your reply! I also get relief from lying down which I often do in the afternoon but I'm reluctant to try to manage without my medication. You are an inspiration - long may it continue. Thanks!

hosbay profile image
hosbay in reply to

Are you really sure that the medication is helping you? I found that when I stopped the medication my symptoms were just the same with or without medication. Obviously I had to gradually reduce the gabapentin but my overall well - being was better without the side effects of medication. One of the worst side effects of the medication was a negative effect on my memory and cognitive functions.

in reply tohosbay

Yes, I'm sure my memory is being affected. My GP has just increased my Gabapentin to 500mg four times a day. When I take these along with one Co-codamol, I can feel the pain retreating for about two and a half hours or so. I must admit these pills are a kind of comfort blanket for me now.

hosbay profile image
hosbay in reply to

I am glad to hear that you do get a respite from the acute and perhaps chronic pain. Even if I had noticed some pain relief from my medication I feel sure that I would still have tried to reduce it as much as I could because I firmly believe that masking pain can create a merry-go-round effect. Cocodamol and Gabapentin interfere with pain sensation processes in the brain but do not help with the processes which are the origin of the pain signals. If sciatic pain is building up during the day because of irritation and sensitisation of the sciatic nerves from normal activities then a lack of pain sensation can encourage one to carry on with the activities which have irritated the nerves in the first place. As the effects of the medication wear off the pain signals may be stronger than they were prior to taking the medication and the merry-go-round continues. Resting occasionally stops the irritation for a period of time allowing the pain signal strength to reduce, and so on.

By not taking medication I am very aware of the factors which contribute to the escalation of pain from my damaged and sensitised nerves and I take steps to avoid or mitigate these factors. For instance as well as resting at certain times I now avoid wearing tight trousers and belts plus tight shoes which I have found contribute to the nerve irritation and sensitisation. I have also found that prolonged anxiety or nervousness also causes an escalation of my pain either through effects on the pain management parts of my brain and/or control of the muscles and tissue in my body.

As I said at the beginning I am glad to hear that medication works and is a comfort to you. At the end of the day we all have to try to manage our debilitating conditions in the best way we can.

in reply tohosbay

Thank you for your long and interesting reply. Even when my pain has lessened, I am not tempted to do anything more than I should. I know what you mean but I always still have some pain that reminds me to take care. Like you, I have changed the way I do a lot of things these days. I also find anxiety makes me more painful! I just have to talk to myself and make myself relax. I am having three more injections in my back on 27 February at the pain clinic. They have never mentioned pain management but I guess that's something I have picked up along the way. You have also been very helpful. Thank you.

hosbay profile image
hosbay in reply to

You are welcome. Glad it has been of some help.

in reply tohosbay

Good to read a sane and sensible comment! I admire your approach. Good luck with it all.

Taylorsunshine profile image
Taylorsunshine in reply tohosbay

You gave an excellent description on why the sciatic nerve pain is worse when we are standing up ! I hope you can continue to find relief by doing the things that are working for you now 🙂

Taylorsunshine profile image
Taylorsunshine in reply to

I agree with everything you said in your post ! Maybe the upright version makes more sense to those of us who have the sciatic pain ? I've actually tried to make my pain mgmt & injections apts later in the day so I'm in more pain so that the Dr's can get a better sense of how I'm feeling.

in reply toTaylorsunshine

Hi Taylorsunshine - what a lovely name! It just seems to be common sense to me but the medical people don't think so. I'm sorry to hear you're suffering this horrid pain too and hope you can find some relief. There seems to be so many people with sciatica - I'm hoping one day for a miracle cure! I had three operations, including a fusion, 15 years ago. All was well until 18 months ago when I started with sciatica and back pain again. To say I was devastated is an understatement. While I hate to hear of all my friends on here suffering as well, it means so much to talk to people who know EXACTLY what I'm going through. It's such a comfort. I wish you well for the future and thanks for your reply. x

helixhelix profile image
helixhelix

Perhaps the question to start with is what difference it would make to have one?

I have three collapsed lumbar discs, and three herniated ones in neck. Plus eroded first vertebrae. But not at the level for surgery - and I wouldn't accept surgery anyway. So there's not much point in further imagery....

It doesn't sound from what you say as if the doctors have identified anything that would be helped by surgery? So would another MRI make much difference? Yes it could make you feel that the doctors recognise the pain you are in more accurately, but would it make any practical difference? You know how painful it is! So I wonder whether it's worth the extra radiation from another MRI?

EvaK82 profile image
EvaK82

I doubt you can do them standing - the machienes aren’t build that way. An MRI machiene is a once in 10-20 years investment kind of thing as they are super expensive - so they don’t just have several.

You could try private places (in London) - I think it’s a couple of hundred pounds to pay cash (£200-300)

I had an MRI in a private hospital through Bupa and it was a laying down. Had to grit my teeth through the procedure as I can’t lay on my back, just tummy. But you have to take them laying kn your back.

But I’m not sure what your concerns is - the current scan surely shows more than enough to operate / have follow on procedures? Consider a private expert opinion (£150-250 per appointment) perhaps to then kickstart the right NHS process? It’s frustrating that we have to do things that way as the NHS is sadly often not proactive with options...

Taylorsunshine profile image
Taylorsunshine

I was thinking the exact same thing as you & understand why you think it could show different results ! I recently just had my 4th MRI of the lumbar spine. I had a laminectomy on my L4-L5 2 years ago & all it did was make the sciatic pain worse & radiate farther down my leg. My sciatic pain is almost unbearable now after this last flare up. I have spent the last 7 weeks in bed because its the only position that takes the pressure off of the flared up nerve. I try so hard to get things done around the house but some days it only takes about 15 minutes before I'm doubled over in pain ☹ I actually didn't even know that a stand up MRI exited, lol. My thoughts were that they should have a stand up version so it could show my spine when I'm in my full pain mode. After getting my results this past week, my spine surgeon said my sciatic nerve is "smashed". I have a fusion surgery scheduled in a month as long as my Insurance approves it 🤞🙏🤞🙏 I've had 13 injections over the last 21 month span so this is my only chance of getting back to work. I wish you luck my friend !!

Emma2017 profile image
Emma2017

I have heard of one case where some guy had the same problem. He was in excruciating pain when standing or walking but not as much when laying down.

He had a couple of mri’s but all came back saying there was no problem other than some slight bulging at 2 levels. He argued to have a Stand-up mri but the NHS would not pay for one. There are also only 4 of these scanners in the UK last time I checked.

He ended up somehow paying for one himself through getting the money together one way or another.

The scan showed quite a different story. He went with the disc to his specialist who was quite amazed at the result and scheduled an operation.

Cannot remember the specifics but it shows that in some cases it makes quite a difference but it might not make any difference in others. It did cost him £1200 and was about 3 years ago I believe so will be more now.

Not sure if this helps you but it does show you could be so right.

in reply toEmma2017

That’s really interesting. Thanks so much for posting.

I will quiz the team at my next MRI and see what info I can glean from them.

Macblank profile image
Macblank

After thirty years since I initially damaged my spine, and 29 ½ since the big car accident.

Going from the top ..

Osteoarthritis in all of neck, including the one that joins to the head! I have 2 different stonosis, and 3 compressed n bulging discs. I get pains in shoulders, arms and hands, including very painful tingling in most fingers most of the time, with a lot of numbness.

I had 2 elbow ops to try to relieve numbness in hands, but no change and now more painful elbows.

I have osteoarthritis/rhumatism in knuckles, but worse on right side where there bad all day.

I have scoliosis in my thoracic region. They say I was born like that, but I don't believe them.

Lumber...

I have degenerative facet n disc disease in several places, plus osteoarthritis, plus sciatica in both legs 24/7, stenosis (apparently that's not on the last MRI, but was on all MRI previously‽ They won't say how, but just it's gone! I don't believe that it was possible). I have a couple more badges I can't remember right now!

I have osteoarthritis in knees and hips.. beginning of.

That's it for osteoarthritis n spine, lol.

So as you can see, I want the best truest image possible. I dont feel laying down with everything more even distributed, is the best. Although I do find it impossible due to pain to lay on my back, I do so for the MRI, and with the help of my morphine 🤪.

My pain pills ...

Zomoroph, sevradal, duloxatine (all I can think for now).

Emma2017 profile image
Emma2017 in reply toMacblank

Not sure where you are but I know there is a stand-up mri machine in Leeds and London, not sure where the others are. In your case there seems an awful lot wrong with your back even with a laying down mri so not sure if standing up would show any more but it’s definitely worth pursuing. Take care.

Taylorsunshine profile image
Taylorsunshine in reply toMacblank

That makes absolutely no sense on how your stenosis could have just disappeared ! I can imagine how frustrating that must be for you 🤨 As crazy as this may sound, I wonder if the physician who read & interpreted your MRI films could have just accidentally have forgotten to include it in your results ? You obviously have a lot going on with your spine & I hope you can find something that will help bring you some pain relief soon...take care

wheezybronch profile image
wheezybronch

I cannot help you, I have never even heard of a "sitting down" MRI, good luck, I hope that you can get successful treament soon.

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