MRI Paranoia...help!
 

Hey everyone,

Just wanted to say hi! I'm new to this site and have joined as my neuro thinks I have TLE. I'm awaiting my first ever MRI and I'm really scared!

I discovered I'm claustrophobic years ago when my mum tried to make me go on a tour of a mine shaft...pretty much I ran out screaming and felt the most afraid I ever have in my life! Also I once crawled into my sleeping bag head first (not sure why now!:p ) and a similar thing occured. :winky:

So...I'm thinking an MRI is going to be a bit scary for me! My anxiety levels have gone through the roof these last few months as well, possibly just a natural response to the sudden increase in simple partial seizures (we think they're the only type I have at present) or the anxiety center in my brain could be effected by the epilepsy.

I'm going to be sedated, but I'm scared I'll be too dopey to tell them I want to get out if I need too...and I've never been sedated before so I'm worried I could react unpredictably or something. :confused:

Pretty much I'm just terrified! :eek:

Anyone have any suggestions???
What should I expect to happen?
How did you cope?

I'm allowed to bring some music, and it's at St Vincent's Hospital Melbourne MRI Imaging Center (Australia), if anyone on here has by some chance had an MRI there...I'd love to know just how claustrophobic their machines are, it said on the website they have newer ones which are fairly wide and short.

Sorry to make my first post a giant whinge! I really respect what a great technology MRIs are, and I want to do all I can to make sure I don't chicken out. At the moment I'm worried I won't be able to go through with it...

Thanks for the great site, and I look forward to chatting with you all, :)

Luna.

Hi Luna -- I'msorry this is happening to you but I'm certainly glad you've found us..... We all help each other because we've been through the same "stuff" :p .

I had my first MRI in 1990 and was so terrified it took two of the aides to help me into the MRI. Now I understand it's nothing but a fine machine making noise.

It sounds like you're going to be in a truly great hospital if you're being offered sedation (never happened to me !!) and taking music (I am offered music). Tell the people, the techs working the machine, how frightened you are ... they WILL help you.
They care .. they want and need you to be OK.
They will be watching you very, very closely. The slightest move you make will be very visible to them.
They can hear anything you say because you will be given a microphone.

I promise you'll be OK .... I know, honest. In 2005 I started having an MRI of my head every 3 months and it hasn't stopped yet.

thanks everyone :)
 

Thanks guys. :)

You've made me feel quite a bit braver...I know I can do this. :)
The whole things seems less scary now I've heard your experiences, and you're absolutely right about this being an important test I need to do.

Hey, it might even cure me of claustrophobia! :winky:

Cheers :)

Wonderful, Luna, just WONDERFUL. You're taking a giant step :D
But when you take it, dont hesitate for one minute to THINK OF YOURSELF FIRST.
Tell the MRI people about your fear and claustrophobia ... make certain they know. (But I bet they ask you first :winky: ) Don't try to "act" brave or anything like that. Remember they asked you about claustrophobia. It's a common fear with MRIs.
Since it's a center devoted to MRIs it's very possible they have an "open" machine.
.............................
But the most important thing will still be happening long after you leave that machine, right? It's possible you'll be dealing with TLE and that sure takes longer :p We're wishing you well.

Luna, I Have Claustrophobia Now(at Age63) And Epilepsy.had The Same Problem.thought I Was Going To Die In There.looked Around At Other Facilities And Found An"open Mri''.dying Is The Worst Thing That Can Happen.take The Sedative(did That)and Relax.count The Minutes Off To Yourself.see How Close You Can Get To The Time They Say You Will Be In There.close Your Eyes The Whole Time . Tryout Your Counting Technique Before Hand.concetrate On That. .....you Can Do This..........don't Let The Bastards Get The Best Of You..........."you Can Do This" Is Your Mantra Till It Is Over ... And.......it Will Be Over ........life Will Go On Again...when You Get Past This.
Best Of Luck...you Are Not Alone.

Hi Luna,

I am not usually claustrophobic but discovered I was when having my MRI. I made a mistake after they put me in the "tunnel" and opened my eyes: I had to get out of there really fast. After calming down and walking to slow my breathing and getting a grip on myself, I realised I was so ill I had to have the MRI at any cost.

My MRI team was so supportive and understanding of my fear. They suggested I try it with a blindfold: it worked wonders for me. I was able to open my eyes if I wanted too but did not get that terrifying "panic" feeling during the entire procedure.


Becky :)

Sorry I don't have much time to give tips (I use my ipod), the place I get mine usually offer valium. If you call them to express your level of stress/anxiety they may tell you to come 30 minutes early and get to take a valium. A friend of mine takes Tylenol PM and sleeps through them. I just use my ipod and turn it up really loud so I don't hear the machine (its the machine sound that freaks me out).

Hi Luna,
Take my word I have had many MRI's over the yrs. I also have TLE with absence, cp sz., and simple partial sz. Having an MRI made a world of difference in finding what caused my sz. You will hear a lot of banging going on but that's just the machine getting the pictures and if you like the medical field you can see the detail of your pictures like you won't believe. Also if the Dr. gives you a shot which will make you hot for a couple of minutes that will show even more detail. The shot is a type of dye going through your system to show more detail. I never have been chlostropobic (sp?) but take my word the test will be well worth it and they often play music to help relax you when your having this test done. Here's wishing you well and May God Bless You!

Sue

Thanks!
 

Thanks for all your advice!
I'll do my best.

I did try and find an open mri, but I can't find any listed anywhere in Australia (where I am). And I'm in the public hospital system, so don't think I'd really get a say.

I'm thinking I should try the blindfold thing too, so thanks for that.

The place where I'll have my MRI I also had a CAT scan and even that freaked me out. Mostly as the doctor said it would be 3 minutes or something, so i counted, and I was actually lying there for ten minutes (I confirmed this afterwards incase I was speed counting!). I'm not sure if the machine was on the whole time (I'm sure it wasn't if that's not safe), but apparently they had to go and get someone else to have a look at my results so they just left me there. Maybe incase they needed to do one with contrast or something.

But I was terrified! I irrationally imagined everyone had gone and I'd been left in this room by myself until the radiation melted my brain!

I'm afraid i'll get in the MRI and that's what will freak me out (even though I know it's not using radiation), that I've been left alone. I'll make sure I tell them my specific fears so they know to keep talking to me when they can.

I opened my eyes once in the CAT scan and felt claustrophobic, I'm not even sure if your head goes in anything or not for that as they weren't open long enough! But that experience has kind of added to my paranoia.

Thanks again everyone! I'll make sure to read over all of your responses again and take action to create an environment in which I'll be as calm as is possible. I just wish the tube was big enough i could bring a friend in with me!

:)

I AM NOT LYING!

When I first had my very first MRI, I didn't know what
it was, the Doctor simply said it was a special X-Ray
Machine. And I thought, well OK. So I went in, I was
MORTIFIED to see this, what looked like "Star Trek
Space Tube" ~ since this was a long, long time ago
(I've had a lot of MRI's performed since) - these Techs
were well trained in dealing with patients fears.

So they got this guy out and 2 girls and I can remember
because they had me laughing so hard and it went some
thing like this (All the girls were doing were holding signs
behind him and then making circles behind their ears (you
know like - he's crazy)...)

GUY: I'm gonna put you in this tube and it's gonna suck
you in and I got this bull whip (he's holding it) here to beat
this machine to get you out when we're done

GIRL: (Holding sign) HE'S LYING

OTHER GIRL: (circling her ear and shaking her head)

GUY: This machine is gonna suck all the life out of you
and a whole bunch of aliens are going to enter inside of
you.

GIRL: (Holding another sign) HE'S NUTS

OTHER GIRL: (Holding another sign) HE SHOULDN'T BE
WORKING HERE

(I forget what all was said)

But they had me laughing so hard - I don't know who
I was laughing at - HIM or the GIRLS.

But I could tell they've used these signs a lot as it
was pretty worn. But they did tell me it would make
noises and asked me what music I liked to listen to.

And after my first MRI, it wasn't bad at all, in fact,
they even let me see some of the pictures and I
thought it was cool!

:cool:

I wonder if they required these MRI Techs to take
DRAMA? Because they were very good at it!

I never did become fearful of MRI Machines since,
because of them. ALIENS? LOL!

:hug:

Luna,

When is your test? Let us know how you did. I know you will get through this...WE ARE WITH YOU.

More super ideas, awesome!
 

Thanks!

Someone else suggested I should try a visulisation, the one mentioned here sounds great, thanks for going to the trouble to write it out. :)

That's fantastic humour worked to calm you down! I'm not sure it would work for me though, I'd probably freak out even more! :p

My MRI is next Friday the 13th of July. Yup, Friday the 13th! ;) I'm choosing not to interpret that as a bad sign!

I also have my first EEG the day before, at 9am. Most of my seizure activity happens when I'm falling asleep, so I'm not sure if it's the best time to do it. Hopefully something will be picked up.

Thanks again everyone, it means alot to hear your stories and what worked for you.

I'm sure I'm still scared a/b the mri but I'm choosing not to think about it too much yet, and trying to slowly get used to the idea.

Thanks. :)
I told the neuro my concerns and she right away put me down for an MRI with sedation, so that was great.
Good to hear about the EEG, I definately will still be sleepy!

Will let u all know how it goes. :)

Luna, sedation made all the difference for me.Kept counting and kept my
eyes closed.BEST OF LUCK TO YOU TOMORROW.YOU WILL DO FINE.Let us know tomorrow when it is over.....Make sure you tell the techs about your problem. YOU WILL DO FINE

Hey everyone!

Sorry so long no response. :p
My mri is now on the 14th of August, so it's been put forward a month. Can't say I'm not relieved by this, but I would like to get it out of the way.

I was suffering chest pains and a numb left arm (scary symptoms!) and had to go to hospital the night before, so they didn't want to give me sedation until my chest problems had been investigated. And they didn't want to mri me without sedation (my claustrophobia is pretty extreme).

Everything is all fine now and I am mri ready-I really want to find out what is the cause of my problems. I spoke to a woman from the epilepsy foundation and my neurologist and I am feeling much more calm about everything. I have my cd and wireless bra so i'll be comfy!

I've also started medication and it's helping with my anxiety a lot. So, lets see how we go second time round. Good to here the sedation helped you Debee, after starting my meds and feeling their sedative qualities (hoping this wears off) I can see how it will help.

While I was terrified last time, I would have liked to have had this out of the way by now...but, everything happens for a reason, and in a way it's made me more determined to have this mri so it's kind of a good thing! :p

I had the EEG, it was normal, but my neuro wasn't surprised and said 50% of tle cases don't show up. I'm now doing an all day EEG, I would like a result so we will have to wait and hope. (Funny thing to hope for!)

Thanks so much for your support, I almost feel like I let you guys down for not having the mri yet!

You can be happy that I am feeling much more positive about things and I am determined to be the one in control of my epilepsy, not the other way round. So no mri is gonna scare me! (well, it will a little :p)

Love to you all, :)

Luna,
Didn't want to mention it earlier,BUT, my problem started
when the tech on myfirst MRI said he could hear me at all times.
Then 3/4th of the way through,I talked to him with no reply. You
need to talk to the tech before you get in.Don't be "BRAVE''and act like
this is old hat for you.But you will survive.Didn't think I would,but I did.
I know the delay is not fun,had 2 mo.wait for last one. I imagined all kinds of scenerios happening,none of which occurred. Take the sedative.
Listen to music,if it will help.BUT,most of all, express your your problem
to the tech. GOOD LUCK.........YOU WILL DO FINE.......LET US KNOW ..

Thanks Debbee :)
I was thinking that one of the things i want to bring up before I go in is how i will communicate with the tech, so very glad u mentioned that. that would freak me out, so i will stress to them how important it is to me. my mri is tomorrow, so i will report back after it's over. you're right, last time i kept telling myself how it would be fine and denying my fear then as it got closer i was very panicked. this time i have tried to be honest about how i am feeling and hopefully that has helped. :)

all the best, and thanks again! :)

I survived! Thanks everyone :)
 

Hi all, just wanted to let you know I had my mri today and went well. :) I read over all the suggestions you gave me last night and found this really helpful, so thanks so much.

The mri center staff were great. Even though I felt there was no way I could undergo the scan without sedation due to my claustrophobia, they asked me to give it a shot and i agreed to. I had moments of extreme anxiety today leading up to the mri but I didn't supress it and this really helped me not to 'let it out' at the last moment! so thanks to everyone who stressed the importance of not pretending to be braver then you feel, and being honest about your feelings.

I was nervous but quite calm when my name was called, and the nurse had said i was allowed to take my partner into the scan with me! This is such a fantastic thing for them to allow, and it is what allowed me to remain calm during the scan, so much so that I didn't have to be sedated! A big surprise there. :)

The mri seemed to be quite wide and short as it is the one used for claustrophobic patients. By no means was it an open machine but it didn't look that scary, and the room was lit in a really good way too. Little things like the surrounding enviroment really help I think. The biggest terror I felt was as I was being prepared to go into the machine, so as I started to slide in I stopped it to ask the attendent to please tell me when I was halfway through the scan and she said she would. This helped so much with the overwhelming fear I was feeling.

The biggest help though was as I said before, having my partner sit just outside the machine and massage my feet and legs. (from my knees down was out of the machine). It stopped me freaking out that i had been left alone (what happened in the CAT scan) and just helped...SO MUCH. The nurse told me this wasn't something they usually did, but they offered it to me pretty much right away. It's something they should offer, to everyone.

I wore earplugs as this was a really loud machine, and I decided not to listen to my cd as I had the feeling it would be too much confusion with all the different sounds. Some of the noises were scary, but luckily I study contemporary dance and we use a lot of 'industrial' sounding noises in the music scores for our pieces, so by the end of it I was choreographing a dance in my head to the sounds! My partner is a musician and he also enjoyed the sounds! I didn't expect that! it actually distracted me from my claustrophobia.

At other times I just distracted myself by thinking about the current life situations of my friends, and things that are happening in my life at the moment. This helped keep my mind off what was happening. The few times I did feel a panic I made sure i was breathing deeply and brought up another topic to think about, or focussed on the fact my partner was right there.

I closed my eyes before i went in and left them closed the whole time. I didn't feel closed in like I did with the CAT scan, strangely enough. I was aware I was in the tube, but if I started to get scared the touch of my partner's hand brought me out of it. The tube didn't look scary before I went in, as it was well lit and I could see it was relatively short, and I just didn't feel my normal fear. :) (As my eyes were closed I also didn't know how far in I was which was a plus.)

The attendent telling me I was halfway there was fantastic, and how many lots of sounds to expect. Having the buzzer and knowing I could get out at anytime was great too. My scan was only 15mins, it might sound ridiculous that I was so scared of a 15 minute scan when people endure ones so much longer. It was probably one of the longest 15mins of my life though!

This had turned into an enormous ramble but I hope it might be useful to someone else down the line. Thankyou all so very much! :)

If were to repeat any of the advice you gave me and what I have learnt is 1)Don't be afraid to feel what you are feeling, and to ask the attendent for what you need to feel safe. 2)Ask if you can have someone in there with you. Even if they just have a hand on your foot, it makes such an incredible difference.

How wonderful! What a great hospital you have dealt with. Your partner is a wonderful person to be sit with you and help. And it's grand that the MRI lasted just 15 minutes.
It's just fantastic that it's all over and has gone so "easily". :grouphug:

Thanks so much for letting us know.

LUNA......KNEW YOU WOULD SURVIVE.I didn't like my last one ,but got though it. Life looks better on the other side of it................Congats.

mri
 

Glad u found it ok. I`ve had 2 now,
1st one kept my eyes shut the whole time `just incase` i panicked .. 2nd opened them briefly at one stage and found i wasn`t spooked by it then almost fell asleep.
At 1st scan when they did the `metal in body` check i forgot to tell them i had metal dentures and just remembered before going into scan .. they did not ask the denture question specifically.

2nd scan had both my head then neck done but when i got result neuro just mentioned neck scan .. i told him brain/head then neck were done but he said "no no ... that had not happened" he had just ordered neck. He then said maybe u moved so they put u back in No! i didn`t .. they explained they would do head/brain then neck and also appt letter stated that.

I was a bit miffed at neuro as i DO know what happened, about 20mins for head then a 5 min pause then about 10 mins for neck does this sound about right? .. as my memory is awful now ... so i wonder what happened to that brain scan if they did it in error to his order.. never did find out.

Where are you in Australia?

There are quite a few open MRI's in the country. I live in Wagga Wagga and there is one there.