Where to begin ...

[Krystine]

Hello,

It is wonderful to find this forum for the support offered.

Long story here ... in 1987 I had a sudden hearing loss accompanied by tinnitus. ENT said it was sudden idiopathic hearing loss. I accepted it and bought hearing aids. In 1988, I had some dizziness and headaches which lasted about 3 months. Saw another ENT, he wanted me to have and MRI ... I couldn't ... he sent me to a neurologist who said I must be depressed. Life went on.

About 2 years ago, I started having dizziness when getting up. It went away after a few months, came back, went away but in January it came back along with a strange feeling in my head and lasted during the day, not just upon arising. Since then I have had constant headache and balance issues.

I saw an ENT a few weeks ago and he is rather certain I have an acoustic neuroma. Hearing in both ears is not good (with the right ear distorted) and both having tinnitus. First Doc wanted to do ABR and ENG and I see him next week for those results. He also said I will need an MRI. And there in lies the big problem and why I am most likely going to check out by acoustic neuroma. An MRI is simply not doable for me. I have many serious phobias such as agoraphobia, anxiety/panic disorder and most significant - serious claustrophobia. I am 62 and a very large lady 

Home is about an hour and a half out of Philadelphia. It looks like there are some good options there but I know no doctor is going to treat without an MRI. My ENT said CT scan with contrast will not show an AN. I had a CT of the head with contrast a few years ago and even that made me panicky but I knew they were quick and the "thing" was not always over the face.

Thanks for letting me vent here ... you are all so courageous and I wish you all well with whatever treatment you may choose. And I am always open to suggestions if anyone has one for one scared old gal

Krys

[Joef]

one of the first things when I told my father of the AN was ... "you where in one of those MRI machines!, they would have to sedate me to get me in one" ... he is very claustrophobic!    they do have some new "open" ones that are a little bigger.. and could they sedate you? .. I'm no doctor, but as long as you dont move.. any meds you might on should not effect the scan... personally, its the sound of them I dont like, likes its going to break or something.....

[matti]

Hi Krystine -  As Joef said, there are MRI's that are open on both sides, so the feeling of claustrophobia should not be a problem, also someone can sit next to you if that makes you feel more comfortable.  The room is well lit and the techs talk to you throughout the proceedure. Go visit one of these facilities and ask for a looksee, I know they will be more than happy to accomodate you and help put you at ease.  MRI tech's are very sensitive to patients needs and fears.

I generally take a valium or two to help calm me down and so that I don't focus on moving, and I somtimes don't remember being pulled out for my injection, nor do I remember the rest of the day   When I had my first MRI in 1998, the scan took almost 50 minutes, but since then, new machines (closed) have come out that now only take 20 minutes including injection.  I am claustophobic and also suffer from panic attacks, I was very nervous for my first MRI, but sailed through it and since then have had 8 more post op.

Hugs,
Cheryl

[Obita]

Hi Krystine:

Welcome!!

I needed to get an MRI many years ago for a shoulder injury.  I felt the same way as you as I was extremely claustrophobic.  I blame my brother.  He rolled me up in a large rug when I was a kid. 

Anyway, for this MRI (this was way before the wonderful invention of open sided MRI) I told my Dr. that the only possible way I could do it would be with the help of drugs.  So, with some valium in two doses before the test, I couldn't have cared less what they did to me.  Now, I have MRIs yearly and I don't even request the open sided machine because it is no big deal to me.  You will always have the "get me out of here" button in your hand if you really need to escape.  The only problem with the escape route, is you will need to go back in and finish.  The films are done in 3 to 7 or so minute intervals so it is not like you have to keep quiet and keep still for the whole time.  The tech will talk to you in between and they always ask if you are ok etc....

I am sorry to say, if you want to know FOR SURE, one way or the other, you will need the MRI with contrast.   

Good luck to you Krys.  I am living proof that the MRI machine phobia can be overcome.  Elevators?  I'm in last, out first and hate every second of it.      Kathy

 

[johnsli]

I am also a large lady with severe claustropobia, fear of heights and needles.  So I was a mess.  I was shaking all over before the test.
What I did, is before they closed the catchers mitt, I closed my eyes, and kept them closed the whole time.  I said many, many prayers during the 45 minute test.  After the first 30 minutes, they brought me out for the injection.  I didn't have any medication and just dealt with it.  The techs did talk to me throughout the test.  I got through it, and I knew after the test was over that they saw something, they didn't say it, but, they were very different than before the test.  My results were ready in 24 hours.  I also had a copy of the test to take home.  I saw the tumor, but, I didn't want to believe it.  Thankfully, I have to go for another MRI on 6/20, and if there is no growth, they will wait another 3 to 6 months and check it again.  YOu have done the right thing by joining the forum.  They are the best.

LOL
Laura

[Betsy]

Hi Krystine and welcome!

I was worried about the MRI too.  I'm under the weight limit for the machine, but I'm short and round...I was truly afraid I'd get stuck in there and suffocate before they figured out what was wrong with me.  Claustrophobia hadn't even crossed my mind until they started to put me in there and the walls of the machine touched my arms.  I couldn't push that panic button fast enough.  But it turned out okay, mostly because I had a great technician.

Once I got all the way in the machine it wasn't so bad, I just kept my eyes shut and imagined I was somewhere else.  The air is constantly moving around you too, which somehow makes it feel less confining.  The noise is loud, but to me it sounded like the percussion section of a marching band (I'm an ex-band geek, so I found that comforting).

If you're north-west of Philly, I know there's an open MRI in Wilkes Barre.  I've seen the billboards and it has nice big cut-outs on the sides.  In any case, it's probably better than no MRI at all.

As scary as the MRI was, it was worse not knowing what was wrong with me.  Just think about it...wouldn't it be a relief to know for sure?

I'm glad you found the forum...write again soon.

Betsy

[Boppie]

Have you heard of an Upright MRI?  A center here in my town has one.  You sit in there and look out as if you are watching TV.  Is this available to you?

My husband swears he'd request an Upright MRI, if he ever needs one.

[matti]

I have seen the upright MRI machine while I was at Stanford and was so amazed.  Last week I had an upright CT scan of the head for my sinuses and again totally amazed, as it only took 40 seconds and immediately produced 600 slices/images and without a dye injection, which is standard for a tube CT scan.

Cheryl

[Catflower]

It is possible to do an MRI under anesthesia.  My son has a severe brain injury from a car accident and is unable to tolerate MRI's, but they put him to sleep long enough to get one done.

[Krystine]

Aw, shucks you guys ... thanks for the warm welcome, suggestions and encouragement.

I'll fill you in on my checkered past - with MRIs and sedation, that is 

In the 88 MRI episode (the tech must have known I was toooooo big because he did not put anything on my head for a brain scan) in my most polite way I asked him to please take me out. And then I started crying like a big wimp. I had been prepared to crawl out if he had not moved me. That was that.

Fast forward to 96 and bad back pain (had disc surgery in 76 thankfully before the MRI was used here). My doctor gave me Ativan, I took it, yawned a few times, got on the gurney, the tech told me to put my arms over my head, put me in, told her to take me out and that was that. Fortunately, a nearby facility just introduced their open MRI and I could do that since I did not have my head under the "thing." I believe that was a Hitachi - nothing on the sides. I have not really experienced the kindly technician syndrome though - the one who did my back was quite testy because I could not hear her from in her booth with my bad hearing.

There is a walk in MRI about an hour from here. The radiologist who owns the facility says on his website that the films are as clear as closed. My ENT does not think open MRIs will produce clear enough results so I will have to look into it once I see him next week for the ABR results and he gives me the script for the MRI. It had always been my understanding that one could not be anesthetized because they could not monitor your breathing, heart and blood pressure.

Two years ago I needed an epidural for back pain. The doc gave me 20 mg of Valium to take an hour before the procedure. I felt a little sleepy in the billing office before the shot but was wide awake and anxious when they took me back for my injection. In 98, I had foot surgery with twilight sleep. Thank heavens they also numb your foot because I woke up on the table and heard the saw cutting bone. I just don't seem to do unconscious very well 

I do have a question ... for those who had the ABR test, did it increase your tinnitus (if you had tinnitus)? Ever since I had that test, my right ear which has little hearing feels like a chain saw is running next to my head and the left ear which has so -so hearing but had negligible tinnitus is now whistling and hissing. They did my left ear first and then my right but cut the test short. Somehow, I feel that is bad news for me but will know more next Tuesday.

Thanks again everyone for your support.

Krys

[Kathleen_Mc]

Krys: I too don't like those tini wini places, my first MRI was along time ago and it was an old machine, spent a lot of time yelling "get me outta here". From then on I have always been well medicated with Ativan and usually fall asleep in there. The newer machines are more open but I wouldn't be able to have the test without my Ativan, ask your family doctor.
Kathleen

[cookiesecond]

Hi krystine,
I do hope things work out for you. My AN was found on an open MRI. I can totally relate to the claustrohobia, I walked stairs many years as opposed to elevators. Even in pain. One of my great fears for the AN surgery was having to ride the elevators because I was going to a bigger hospital and as the patient I wouldn't be able to walk the stairs. I thank God I made it through the surgery and the elevator rides.
I had my first closed MRI in April, 18 months post op. They let my husband go in with me and gave me a "cocktail" consisting of valium,demerol and dramimine.I didn't go to sleep but it did help. If that didn't work they had orders to do IV sedation so I know you can have one while completely  sedated.
You are definitely in my thoughts and prayers.
Take care and God bless,
Lynn