As you're all so kind in answering my many questions, I just thought I'd update on the MRI scan (pelvis) and hopefully if anyone who is awaiting their first one is reading, give some insights. Firstly, making sure to have no metal clasps on clothes was helpful so no need to get changed into a gown. I was asked to lay on the machine and given pillows. Here is where I think that it is important to make sure that you're very comfortable. I did ask for support under my painful shoulder but should have got more and my back arches when lying flat so I think that a support under there would have been helpful. I was in the machine for a long time as different angles were being done. I asked for music but it was not great and I wonder in future whether you're able to bring a CD that is relaxing to you. I was hoping that I would be able to just relax and dose as I am not particularly claustrophobic so the machine itself didn't bother me but my legs were bound in an unnatural position and within minutes my shoulder was very painful. I could move it a little without disrupting my hips but it was quite limited in the machine. I'm not sure how long I was in there but judging by the time I got out, it was at least 40 mins. I was very glad to be able to move afterwards and pretty stiff. What surprised me was the fact that by the time I got home I was absolutely exhausted and it felt as though I'd been doing a workout the whole time I was there!
So my advice would be if you have aches and pains, take painkillers before you go and make sure that you're as comfortable as can be on the table before you go into the machine. Also ask how long you'll be in there and whether you will get breaks if having multiple scans. I wish I'd asked for a break in between scans so that I could stretch out a little.
The upside is that I can now start taking prednisolone and hopefully have a little respite from the pain while the consultant decides on the best treatment pathway.
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Well that must be a relief knowing it's done and you can start the prednisolone. I hope you get some relief from the pain you have been suffering. All the information you have given in your post will be helpful to anyone about to go for an MRI. Now you gotta relax. Excuse the pun, couldn't resist 😄.xx
Thanks Biofreak...I had a long relax when I got home. I rarely sleep during the day but I did dose off after the scan. As you may guess, I chose my username as a constant reminder to myself 🤣
Oh I also forgot to add, they streamed cool air over me while I was in there. Maybe to help with feelings of claustrophobia and it was nice on my face but it was cold on my shoulders and made the stiffness/pain worse. I wish I'd kept on my shawl which I'd taken off at the last minute expecting it to be warm in there.
Hope it all goes well and if you are particularly in pain, I'd recommend getting advice on pain relief ahead of time. I don't have anything other than OTC pain relief that doesn't hit the spot. You don't realize until you're not allowed to move how much relief comes from just regularly changing position.
Good tips. I had three private scans done about a year ago. The first one was a lumbar scan. I made sure I had clothes with no zips or metal parts and I just took off my bra. I was lucky in that the operators saw that I I was extremely well padded out - in fact I was really comfortable.
I know what you mean about feeling a bit chilly - I wore jersey trousers with an elasticated waist - the fabric was quite thick but it’s definitely a good idea to at least wear a top with long sleeves.
I didn’t have any music - I worried that I might tap my feet ti the rhythm so I just listened to the machine - even with headphones on it felt like I was at a very noisy heaven metal concert.
Unfortunately with the first lumbar scan I decided I’d do some deep breathing which was fine until at the end the chap said he’d had to do it again because I’d moved. I said that I definitely hadn’t moved and it was decided it was the very deep breathing that had upset things. So I was in the machine for a double session.
I went back a couple of weeks later for a hip and pelvis scan and I was told on the phone that I was going to be in the machine for an hour- well thinking of having the other one repeated because of the movement I was in a bit of a flap. I’m quite claustrophobic so it was a big deal for me - I don’t fly, I don’t like lifts, I don’t even like tiny rooms or being jammed up against other people.
Anyway eventually I asked for a break between the two scans - the receptionist was fine with that but the radiographer wasn’t keen - not sure why but they did say they would give me a break between the scans - I stayed on the bed though.
I mentioned about the deep breathing etc and he said that the areas that was being scanned this time were unlikely to be affected by my breathing and he was right - probably because I didn’t do any deep breathing to relax myself though.
In the end I was absolutely fine and although I was in it for a long time, the time flew by - I had actually almost dozed off when the voice said I had finished.
I wasn’t in pain but someone I know was when they had an MRI scan and the operator asked her why she hadn’t taken a painkiller before she got there - so it would be worth finding out in advance what painkillers you could take.
That was what I had, hip and pelvis. To be honest, the time did go quicker than I thought, but assuming that they would take me out and reposition I was really anxious that I'd have a short break and then have to go back in again. I think that if I'd known that I was in for the whole thing, I'd have remained more calm towards the end as I'd have not been worrying about the fact that I was not even half way through at around 40-50 min.
Communication around medical procedures often seems to be lacking. It is assumed that people know what to expect and of any things they can do to aid the procedure or make themselves more comfortable. I didn't think of pain relief as I live with the pain. I also didn't think about keeping my arms still for a pelvic scan or the fact that if I keep still I'm in more pain.
I must be lucky - I have RA and now muscles pains in both legs so bad it’s very difficult to walk. Had a lumbar MRI recently and have had them before. Yes I followed the rules they give you - no metal etc. I have had no problemWith the MRI - not something for pleasure but it shows your problems( hopefully) I make sure I have plenty of mind activities to do - shopping list - birthday gifts to get - things to do in the house - things I wish I could afford to do. So I have no problem at all and yes I’m a little bit uncomfortable especially when I get off but really no more than after sitting in a coffee shop with friends. I do take my tablets before so guess that helps but good luck to all who worry as worry is worse thing to do.
I do hope that I’m not adding to worry, but rather giving my thoughts on how I could have been more comfortable. I had house renovations to think about while I was in there which passed some time.
Oh, thank you for posting. I am having MRI of spine lumbar and sacral and pelvis SIJ next week. Was meant to be today but machine broken. Your description and advice has been very welcome. Will make sure I am nice and warm and might take a couple of paracetamol beforehand. Like you I have had to come of steroids and have been for 4 weeks now - joints are beginning to complain. Sadly, I have to wait for results of bone density scan (6 weeks!!!) before deciding next steps.If you feel able it would be interesting to know your results and what they plan to do to support you, but as I say, only if you feel able. Many thanks again. x
All good advice. I’ve had many scans of the whole spine and pelvis taking over an hour. I always wear a pull on sports bra with no fastenings, so I don’t have to change, or remove anything. I always know which part they are working on by the heat it generates in that area. I once agreed to a full body scan for research, looking at how steroids affect the muscles. They were trying to find a way of predicting who would get complications from steroids. What I hadn’t been told was that it was 2hrs of scanning, and I was as stiff as a board afterwards, needing 2 staff to get me into a sitting position. It was useful as it did show I had some myopathy from the steroids, and still do to this day. The scan was 7yr ago, but I do take a low dose of prednisolone for life, as the steroids caused adrenal insufficiency, and my adrenals have atrophied beyond recovery. Unfortunately I didn’t have a choice re steroids as it was for polymyalgia and GCA, for which steroids are the only treatment. Hopefully you don’t have too long to wait for your results 🤗
I feel for you! My mum has PMR and GCA and has been on pred for 30 yrs. So much for the reported 2-5 yr recovery. In the 2 hr MRI scan did they let you have breaks? I can't imagine staying in for another hour! I also used a crop top style sports bra (good to see I still have use for it 🤣)
Thankfully the GCA has resolved, the polymyalgia remains great m bling in the background. This has been ongoing since 2011, so as you say it seems many of us suffer past the 2-5yr.Unfortunately I wasn’t offered breaks during the session, I wasn’t even aware it would last so long. My rheumatologist was keen to get a fuller picture of what was going on with my muscles, as despite swimming twice a week, my thighs were quite weak. The nhs wouldn’t fund such tests, so this was a way of looking at my muscles and helping research at the same time. I live in Kent but had been seeing a GCA expert in Leeds. I had vascular lesions in my tongue, as well as the burning temples, jaw pain and tender scalp. My local rheumatologist dismissed I could be unfortunate enough to get both at 47, so wouldn’t investigate GCA. This expert contacted me via the charity’s forum asking me to get an urgent referral to her. Gp was more than happy, and it was Leeds who confirmed the GCA, then she said she felt there was more going on, and on further testing found I had aggressive AS, and already had fusion of SI joints and ribs. Unfortunately I then had to be transferred back locally for funding for the biologics, otherwise I’d happily continue the 500 mile round trip to see her. The care at Leeds was excellent, my initial appointment was on a snowy morning, and I was the only person in clinic, and spent 3hrs with her and an ophthalmologist who ran the clinic with her. They enjoyed the challenge of getting a diagnosis, unlike my local team, who wanted you in & out in 10 mins.🤗
Yes it was Sarah Mackie I seen. When I seen her she didn’t do private, but that may have changed. I seen her from 2015-2017. She got in touch with me, after one of the chairs for the charity seen my photo of my tongue, and forwarded it to her as a medical adviser. The chair was concerned about my rheumatologist dismissing the symptom along with all the other classic symptoms, except vision, which thankfully was fine.She is absolutely wonderful, and it was sitting having a catch up with a friend. She works limited hours as she is also a honorary professor at the university, or she was. She also referred me to 2 of her colleagues, one who was a medical adviser for NASS the AS charity, and an Oral Medicine Consultant, who was also a Professor, re the unusual tongue symptoms. I still to this day get flares with my tongue. The Professor did a tongue biopsy, but after I was transferred back to my local rheumatologist, he transferred my care to Guys at London as it was nearer for me.
I definitely recommend getting a referral to her if you can. Despite me living in Kent, my gp was more than happy to refer me to her, as he was fed up with my rheumatologist dismissing the symptoms because I was only 47, and it rarely occurs below 50. Good luck 🤞
My mums started PMR when she was early 40s (she had morning stiffness when I was a teen) but didn’t get diagnosed until she also got GCA around 46. Then she went on and off steroids for a while as different consultants argued over her diagnosis. I think that the long time of nit being treated correctly has lead to the longevity of the illness. I’ve not heard of it in the tongue though. No wonder you became a medical intrigue!
I had painful vascular lesions, and my tongue would twitch and spasm at night. I also got pulsatile tinnitus. The oral medicine professor, explained that the inflammation presses on surrounding vessels and nerves giving the symptoms I was getting. Your mum sounds like she had similar issues to me. My gp referred me as he suspected polymyalgia, but the rheumatologists were always skeptical. I had a temple biopsy which was inconclusive as I’d been on steroids 10 months. Sr Mackie did a special coloured ultrasound that found the inflammation in the temple arteries, and a few nearby arteries. I hope your mum gets answers soon. 🤗🤗
I’m really glad it went ok for you and you can now take Pred - phew, hopefully no more pain now 👍👍
For people who have claustrophobia, I definitely have and was dreading it, because I’d had a full body one once and it was awful. But I was lucky last time I had the pelvic area done, they had a short bore/wide bore machine, and my top half was actually outside (from shoulders to head) so my head was free!
I had ‘contrast’ too, so I really had to stay like a statue, but I could feel the needle dragging slightly.
It’s amazing though how machinery changes over the years, the first one felt like I was stuck in a sardine tin!!!
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