Failed MRI

I had to be taken from the MRI machine as I took an extreme panic attack. My heart rate increased as did my temperature and my throat closed over and I couldn’t breathe. Terrifying.

The radiologist has told me to contact my GP and ask for a sedative then rebook. Problem is, I don’t think I can. I just can’t put my head in that cage. The claustrophobia is that bad.
When I was 21 my home was broken into in a case of mistaken identity. I was wrongly targeted by a group of five criminals who mistook me as my drug dealer neighbor. They broke into my house at 5AM and dragged me at knife point into my very small toilet, where they tied me up and turned off the lights. There were no windows and one of them would periodically hold a knife at my throat and tell me I would need killed if I tried to escape after they had gone. I think this is where it’s all stemming from, it’s never bothered to this level before but, I can only think that’s why I had this very bad panic attack.

I don’t know what to do. I know the sedative the GP will give me won’t be enough. I’m at a loss and feel very disappointed in myself.
My leg is feeling stiffer and the shock like sensations are growing stronger/more frequent…and the itch!

I know I may not have MS but I wonder if anyone has advice.

Omg you have been through it. No wonder your terrified of it! Anyone would be especially after that.

The sedative is very relaxing that they will give you. I am pretty sure you would be fine as it doesn’t allow your body to react so I really don’t think it would cause you problems. Best to speak to your own doc though as they know you more. I really hope you manage to get the help uou need though. X

@Gman

Goodness, that must have been absolutely terrifying. I’m not surprised you have claustrophobia. Please do speak to your GP about the possibility of a sedative, even if you don’t go through with it, it wouldn’t hurt to ask. It sounds as though you really need the MRI so please do consider sedation.

Alternatively you could try some form of therapy, either CBT (for short-term solutions) or trauma therapy (longer term) to deal with what you want through. Although that wouldn’t be a quick fix for your MRI requirement, but may help in the longer term.

I hope you can find a way forward with this.

Kind thoughts
Willowtree

That is an awful situation to have been in! Your panic attacks are understandable. I have panic attacks for a very different reason (IBS fear!) and take a sedative before MRI´s which really makes a huge difference. I hope you can get some help to get you through those annoying MRI´s!

Hi Gman,

What a terrifying thing to go through it’s no wonder you felt like that in the scanner. I too find them an ordeal as well.

There are open scanners for this reason so do speak to your GP to find out the nearest one to you. Sadly there does not seem to be many so it does depend on the area you live but if your finances allow for a private mri then there are definately more available. Best of luck!

Jacs

That’s a really good idea Jacs. Open MRI machine should be available for people with severe claustrophobia. Even if you still need a sedative as well it could be the best option.

Sue

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That’s an awful thing to happen.
I asked for a sedative before my first MRI as I hate being in a situation I can’t get out of. Worked for me.

Open scanner is worth asking about.

Good luck.
Jen

Oh my! What an ordeal you went through…no wonder it has left you with fears!
I really wouldnt blame you for refusing a second MRI. If you have symptoms which point to a possible diagnosis of MS, then let the docs find out via other means…ie lumber puncture…VEP…EMG…etc.
No-one can force you to do anything.
Boudsxx

Thank you everyone for your kind words. It really helps that people understand.

I’m waiting on my GP getting back to me (it’s all online) and then possibly meeting with the neuro consultant.
I’ve decided that I definitely can not do the traditional MRI. I don’t think even the wide bore machines would help.

If the consultant decides he really needs an MRI then I will have to travel and pay private for an open upright, as suggested. Money is an object though. My father is willing to loan me the money if need be though it will be difficult to pay it back.

I know some NHS trusts can fund claustrophobics to private providers but, I live in Scotland and the are no providers up here.

Anyway, I just wanted to thank you all again. I really appreciate your words.

People who have pacemakers or have metal in their bodies can’t have MRI scans either. As Bouds said there are alternative ways to get to a diagnosis of MS - lumbar puncture, VEP, as well as taking a very good history and very thorough physical examination. MRIs have made it easier for neurologists, so much so that they seem to often forget about VEP, which used to be pretty much standard test for MS before MRIs were invented.

All the best.

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This might not be at all helpful, but my hope is that you won’t find it offensive…

So, I’ve had a number of phobias throughout my life, but by far the biggie is a dental phobia. And not just dentists either, teeth in general. For years I couldn’t look at even my own teeth; someone showing me their teeth was simply an unbearable thought. As a child I was actually banned from our local dentist because after putting on an absolutely ungodly display (I was a child, but well above the age where you should stop having complete screaming and crying fits) a dentist told me he was just going to look at my teeth, then proceeded to touch. I responded by biting him. Then I was banned LOL.

This continued throughout my childhood and teenage years, and it wasn’t helped by the fact that I had night-time bruxism which was so severe I actually started pushing my teeth loose. It was always accompanied by nightmares about my teeth falling out, which I understand is a common variety of dream, but which made everything worse. I was in constant pain from all the pressure I was putting on my jaws and teeth, and years of fear of my teeth and no dental care meant they were in appalling condition (I also didn’t brush much and floss wasn’t a thing I learned about until I was an adult).

Basically nothing could get me into a dentist chair. Nothing except…

Pretending to be someone else. I would listen to screaming heavy metal and wear black makeup and I would spend 15-20 minutes before the appointment getting into the mindset of a tough, scary rocker. It didn’t matter that I was actually a total dweeb, because in that moment, I wasn’t. I was Ozzy Osborne, I was Marilyn Manson, I was a person who wasn’t afraid of anything. And it worked.

Years later I heard about a similar therapeutic approach for kids who have phobias. They dress up like superheroes - people who wouldn’t be afraid of the thing that they’re afraid of - they pretend to be them, and they’re able to do the things that scare them. I heard about one little girl who was terrified of… I think it was a vaccination… so she dressed up like her hero, Amelia Earhart. Amelia flew planes, she was a badas*! She wouldn’t be afraid of a needle! And so the kiddo wasn’t either. Given my previous experience, it made perfect sense to me.

I’ve since had a similar experience as an adult with Pap smears. I experienced sexual violence when I was younger and was never able to get a smear. I just couldn’t face any kind of internal exam. For years I was honest with my nurses and told them that I was just too scared, and they were understanding. What wound up working for me was actually not saying anything; a new nurse started at my practice and I decided to go in there without telling her my history and just be someone who was fine taking their knickers off for whatever. And it worked.

I’m not saying this will work for you; clearly you’ve been through a terrible experience and you have every right to be afraid. Definitely take the sedative, and also give yourself a week or however long you need to just let the idea of trying again sit in your mind. Don’t rush yourself; this is at your own pace. Maybe it would help to talk to a professional too, if you’re not already; it sounds like you experienced an incredible trauma, and it’s absolutely understandable - logical, even - that it would have had such an effect on you. It might be possible to have not just a sedative to relax you, but enough to actually put you to sleep, so talk to your doctor. Sometimes I know they can also play radio or whatnot so that you can have some distraction while you’re in there. If you have a podcast or anything that you find particularly relaxing, it’s worth calling radiology and asking whether it’s possible to have something of your choosing played through the speakers. It’s possible that with the right support this could actually even be therapeutic for you, allowing you to regain a sense of control over something that has been taken from you. If you do have a therapist or councillor, speak to them and your technician and see if they could come with you on the day, and maybe coach you through it. You may also find that it might help to spend some time around the machine itself and the space, though this of course relies on the hospital and technicians being willing to allow you to spend a little extra time in the room (you could maybe watch some MRIs taking place on YouTube as an alternative). You may also find it helpful to research the machine you would be in; again, you’d need to call and ask the type ahead of time. Just anything to help you feel more comfortable and in control. One thing I will say is that I had my eyes closed from the moment I lay down, and I’m not sure I would have enjoyed it much if I had taken the time to look at the space I was in! I was instead playing little games in my head and was for all practical purposes many miles away lol.

Good luck. And if ultimately you decide that you can’t do it, then that’s okay too. This is your decision.

That’s some excellent and well written advice Rainbow, thank you.

A little update.

My consultant has been great, he wrote a letter to his head of department and procured finance for a private MRI.

So I’m traveling down to Leeds for an open upright.
This may sound crazy but, I’m actually looking forward to it now.
Things had calmed down a bit lately but the past week I’ve been experiencing symptoms (of whatever this is).

Back of hands sore, numb, tingling. Fatigue, sleepiness, leg spasms in overdrive, especially at night and a new one… My teeth keep chattering/chittering away, again especially at rest/night but also during the day.
My wife recorded a video of my legs twitching away when I was sleeping and I couldn’t believe it.
My right foot was rising up and down, sometimes for a second or two, sometimes it would lift up and stay there sustained for a good few seconds then assume it’s normal relaxed position and my thigh would just start twitching like mad. My teeth also chittering whilst sleeping! After a short sleep on the couch the other day my son asked me if I’d been dreaming I was at the North Pole! LOL

Anyway,
Thanks again everyone.

Well, I actually got the open and upright MRI.

What a difference!
Took a lot longer as they’re not quite as powerful, I was in the machine for 2.5 hours.
Just waiting on my consultant now.

In another related note…

My wife recorded me (unbeknownst to myself) resting on the couch then falling asleep after getting home from work.
My right leg has a life of its own.
I was wondering if I uploaded it to You Tube if anyone would let me know if it’s similar looking to anyone’s experiences of spasm/twitching?