New here and terrified

[scaredtobelieve]

Hi everyone

I came across your wonderful forum on a Google search on my symptoms.  A bit of background....I've had right ear pulsatile tinnitus for about 8 months which has gotten steadily worse.  I have also developed a form of dizziness in that I feel unbalanced alot of the time.  I am in the UK so waited for NHS referral to ENT.  Had a hearing test which was ok and my ears looked in, again ok so was discharged being told to "learn to live with it".  Didn't feel comfortable so went private to another ENT.  Had a camera up my nose to my ear (not sure how that works!) again no signs of anything but he ordered an MRI with and without contrast.  The appointment was yesterday but I bailed    I have severe anxiety and terrible veins which meant they spent 20 minutes with me lying on the scanner table trying to get a vein.  Could not get one so decided to try and just do MRI for now.  I was so worked up I could not do it.  The nurse was not sympathetic tutting and muttering about keeping other patients waiting.  It was decided I needed to see my Dr for a sedative and reschedule the MRIs.

So I now have a new appointment for next Thurs (16 Aug).  Part of me wants it to be today to get it over with, yet I'm so scared to go back there.  What if I truly cannot lie in that thing for so long?  I've been told to expect to be in the scanner for 45 minutes at least.

I know that no-one can tell me whether or not I have an AN or anything else lurking, I just want to run away from it all, as I'm so frightened.

This has knocked me for 6, I am usually so well...although my anxieties have gotten steadily worse since I have a miscarriage in 2003.

Anyway, just wanted to say Hi to you all.

Thanks

Kat

[BlueSky]

Yep, being in the MRI machine sucks that is for sure. Close your eyes before you go in and take deep breaths. If you don't see yourself being in a small place its easier.

That being said if it is an AN you want to know while it's small so you have treatment options. Bravery is forging ahead even if your scared.

[MDemisay]

Dear scaredtobeleive,

Welcome to the forum Kat! You have found a welcoming group of friends here who will help you through this. I know the NHS is cumbersome to deal with from my dialog with Lou (also an England resident) I wish I could help. Have you tried to meditate? Time tends to pass more rapidly when you meditate I find.

Try to meditate with closed eyes and cotton in your ears for the sound. Hope this helps. Good luck with your MRI next week. Can you find out if it is an MRI with contrast as this usually will reveal much more in the scans.?

If it is positive and small then you may come back for a referral and you will have to make a decision. Good luck. You have come to a supportive network! The good news is you have through your searching  you have found a torch which shall lead you out of the darkness! Do not be in despair! You are on the right track with us!

Mike



It is quite natural to be frightened....

[Chances3]

Hi Kat,

I'm sorry to hear about your anxiety.  I think it is very important that you get this MRI so you know for sure if you have a AN or not.  Some suggestions to help if they are possible.  See if you can have a love one or good friend be in the next room with the technician, this way you can feel comfortable that there is someone watching over you beside the operator.  See if they can give you some head phones with some soothing music like classical stuff.  If not, see if you can bring something along.  If you need to take something like a sedative, then by all means do.  It is better to get the MRI with and without contrast, so perhaps they can find a vein near your ankle, or on your hand.  Your overall health is very important, so try to dig up the courage to get this done.  You will be surprised how strong you can become if you try.  If you are a woman of faith, get some one to one time with your spiritual leader, and spend some time in pray.  I will say some special prayers for you these next few days that you can find the strength and courage to see this through. 

God Bless.

[arizonajack]

I'm 65 and had my first ever MRI in May and was diagnosed with AN.

During the MRI I was given headphones and was played music and news.

Other than being noisy, think of the MRI as your friend.

Not knowing is scarier than knowing.

[KBL]

Hi, when I have an MRI, I have then put a wash cloth over my eyes, and it helped me not knowing what kind of space I was in.  If they do not have one to put over your eyes, do your best to keep them closed.  A friend of mine had her daughter go with and hold her hand the entire time.     This is all very difficult, but so important.  Kat, my thoughts and prayers are with you.
Karen

[PamJ]

Hi Kat I am also in the UK.  Reading for message brought back memories I'd forgotten, I too had a camera up my nose (not very pleasant but painless) and I too was also scared of the scanner, I was more scared of the the scanner than being told I had a brain tumour.  I had a word with my GP and he gave me two sedatives to take half an hour before the scan, believe me they worked I was totally relaxed.  Just keep your eyes shut and pop the earphones on, admittedly it does make a lot of banging noises but you'll be fine with sedatives.  Over the course of three years I had 8 MRI scans and 2 CT scans because the pains I was get I was told were not typical of an acoustic neuroma, eventually they took the tumour out and hey no more pain.  After the first two MRI scans I was quite happy going for scans without sedatives.  The way to look at it is if there is something wrong that wonderful machine will pick it up.  Hope this helps.

[alabamajane]

Hi Kat,, and welcome,, we are folks that have been through every bit of this journey you are just beginning.. we care and will try to help you through as best you will let us.. confide, vent, gripe, and ask questions, we will be there.

I too was scared of the scanner, but maybe not quite as bad as you seem to be,, I don't even get headphones offered... but will say ,, like Karen said, ask if they can put a washcloth over your eyes to help you keep them closed. I find that if I don't think about the test too much ahead of time, to increase anxiety ,, and don't look at the machine when I walk in the room, , I do much better.. it is really just a matter of taking your mind off of the situation as best you can,, I know, that is easy to say,,,
I also sing hymns to myself the whole time,, my singing is so bad,, it keeps my mind off what is going on,, and time seems to go by more quickly when you are trying to remember the words ,,,
Maybe they can also put the catheter in your hand/arm before you enter the room so as not to have to lay there while they try to get it in,, then they can just inject dye once procedure has gotten to that point..

Good luck next week,, YOU CAN DO IT!! Some machines, I have found out, actually have larger bores,, or holes that you slide into,, did not realize that until my surgery was done at a different place from usual MRIs, that was  a NICE surprise! We are here for you and will be anxiously awaiting your return to forum to update us that you made it through successfully,,, and you will.. the sedative will help I am sure... Jane

[Trish G]

Hi Kat,

I totally understand your fear of the MRI.  I did not know I was claustrophobic until I had an MRI several years ago for back problems.  Just thinking about it gives me anxiety.

I have had several for the AN.  The thing that works best for me is ativan.  It really makes the MRI experience tollerable.  My MD had me try different doses of ativan at home to see which was the best for me.  I just had an MRI a week ago and remember nothing .  I remember signing in but nothing after that.  I took the med a about 80 minutes prior to the MRI.  The MRI for the AN only took about 30 minutes.  I don't even rember getting the IV.

There is also a mirror that some MRI machines have.  They attach a mirror on the top and you are looking in the mirror instead of the top of the machine.  The mirror is positioned so that you see the tech through the opening.  This is very helpful and gives you the illusion that you are not in a confined space.  I have been able to tolerate an MRI with this but definitely do better with the relaxation meds.

Hope this helps.
Trish

[Kathleen_Mc]

Yup ATIVAN!!!! I take 1mg about 90 minutes before the test and another about 30 minutes before the test, fall asleep in the machine!
First MRI I had was over 20 years ago, it was a closed machine, much like being stuffed in a cigarette casing! I wasn't sedated and spent the entire time yelling "Let me out of this *&%$ thing"! but they didn't as my tumor had already been found by CT earlier that day and needed the MRI done to determine how quick I needed to get into surgery (?that day or could I wait the week and a half until the first available OR reguardless of which surgeon......yeah that's how I got my Dr........he had time before it was too late)
The machines are more "open" now a days but I still don't like them
Do whatever it takes to get yourself in there girl, I know when my boyfriend needed one for his back and he couldn't lie still they just knocked him out with a short acting anaestitic
Kathleen

[Jim Scott]

Hi, Kat ~

You've received good suggestions on dealing with the dreaded MRI apparatus (sedative, music, meditation, sheer willpower).  I'm not claustrophobic and my many sessions of being tightly encased in the MRI cocoon before and after my AN surgery/radiation were not terribly stressful.  I just detached my mind from reality for a bit and let it wander, mostly ignoring my very tight-fitting surroundings.  I realize that it isn't so easy for many folks so I agree with the previous posters that whatever works for you is the best way to deal with the experience.   

Beyond the anxiety caused by your anticipation of being encased in the MRI apparatus for some time, your fears regarding the MRI scan revealing an acoustic neuroma are quite understandable.  Many of us had a similar experience with the same kind of apprehension preceding our diagnosis.  Most AN patients are initially relieved to learn that an acoustic neuroma is a benign tumor - it does not metastasize - and can be addressed with surgery or radiation.  The vast majority of AN patients recover quite well, although some residual effects of the surgery or radiation sometimes have to be dealt with.  Most post-operative/radiation issues are, thankfully, temporary and treatable, even if troublesome for awhile.

The thing to keep in the forefront of your mind in this situation, Kat, is that although these tumors are relatively rare, thousands of people have been diagnosed with an acoustic neuroma and come through surgery and/or radiation just fine.  I'm one of those.  I was 63 at the time of my AN diagnosis (a big one, too...4.5 cm), underwent tumor reduction surgery that included severing the tumor's blood supply then radiation (FSR).  I suffered no adverse effects from either surgery or radiation and recovered quite nicely.  That was six years ago.  I'm doing great today and want folks like you, who are fearful of facing the MRI encounter and a possible AN finding, that none of it is insurmountable.  As we often say: 'there is life after an acoustic neuroma'.  I can attest to that because my life is full and my AN experience is growing noticeably smaller in my life's rear-view mirror.   

I'm confident that one day you'll be a similar position but right now, you need to muster your courage and be determined to undergo the MRI scan next Thursday (8/16) so you can move forward, whether it shows an AN or not.  Use whatever is necessary to get you through it but, for your eventual peace of mind, do proceed with the MRI scan, as scheduled.  We're here to make suggestions (when appropriate) and most of all, to support you in whatever way we can as you move forward.  Please consider us your friends, because we consider you, one of ours. 

Jim

[Lori101]

This is a link to a YouTube "video" (actually a still picture with sound) of an MRI:   http://www.youtube.com/watch?v=9GZvd_4ot04 .

Here's another link - at the bottom of the page you can download a sound file of an entire head MRI - I listened to this before I had an MRI and yes, it was the same noises!

http://www.nofearmri.com/mri%20sound%20sample.html

If you know what sounds to expect, that might help a bit with the anxiety because you'll be prepared for all the banging and crashing.  They also put a helmet like thing over your head.  Picture the grill-like thing on a football helmet. 

The machines I've been in had the mirror attachment already set up.  The second time, the machine was actually quite brightly light inside.  You get headphones so you can hear the technician and music if you want.  You also get a panic button in case there's a problem.  Ask for a warm blanket so you can be nice and cosy.  There are several segments to the MRI and the technician spoke to me between most of them, asking how I was doing.  The longest segments were 3 minutes I think.  If you're nervous, they should be understanding about talking to you and reassuring you.

I'm not claustrophobic so it didn't bother me at all.  I could have had a nap but was worried I'd move in my sleep.
 

[millie]

Kat-I had the MRI with contrast twice in the last six months.  It didn't really stress me out-the music they put on to relax me was the wrong stuff, so when they asked me how I was doing  a bit into the session, I said fine, but please turn that dreadful music off.  Then I just lay there and prayed and daydreamed with my eyes closed.  It passed quickly enough.
The hardest part is the the anticipation of what 'it" might be. However, after the test you will be directed to specialists  that  will help you solve the problem.  And you will feel stronger as you learn, decide, and go forward.

[LizAN]

I have severe anxiety and terrible veins which meant they spent 20 minutes with me lying on the scanner table trying to get a vein.  Could not get one so decided to try and just do MRI for now.  I was so worked up I could not do it.  The nurse was not sympathetic tutting and muttering about keeping other patients waiting.  It was decided I needed to see my Dr for a sedative and reschedule the MRIs.

Hi, Kat,

I'm not crazy about MRIs, as I am claustrophobic, but the worst part for me by far is the IV.  I almost always have to be poked more than once for blood tests, and my anxiety is very high whenever I need to have one.  In my case, I suspect my veins are small and close to the surface.

Techs that are good can draw my blood easily - they barely poke me and I barely feel it.  I always tell the techs this, but most don't listen.  Often what happens is that the tech puts the needle all the way through the vein, without realizing it.  Blood pours into the surrounding tissue, but not into the collection tube.  (At almost six weeks post-op, I can still faintly see the bruise from the first (failed) IV from my AN surgery on July 3rd.  The nurse was moving the needle around inside my arm, saying, "No blood!"  I wish they wouldn't do that as it never helps.  I really should ask for sedation first.)

Someone finally clued me in that I need to be very well hydrated before I go in for a blood draw or an IV.  I'm still not 100% convinced that is the only issue, but every time I have made the effort to drink a lot of water the day before, it has indeed worked for me.  (I don't know whether it would have worked for my surgery, since I had to stop drinking at midnight).

I hope it works for you, for your MRI test.  The contrast is what makes the ANs light up, so it is extremely important, if you want to rule out an AN.

Good luck, drink lots of fluids, and keep us posted!

Liz

[pjb]

Hi, I am so sorry for everything that you are having to deal with and there are quite a few posts but difficult to read through them all and not sure if someone already mentioned it. But I have very bad veins as well and my daughter is even worse and you wonder why some techs can get it okay and others fail miserably. One thing is if they have not done this a small butterfly needle I think it is called that they use for children have you tried? For me it is in the hand since one tech told me the location I insist they go there from now on everyone says but it is going to hurt worse than the arm I rather have them get it in one shot in the hand than 4 failed times in the arm so hoping this helps and see if the hand does work you need an accurate diagnosis and I.V. is needed.... Good luck

Best Wishes,