ANA Discussion Forum
General Category => Inquiries => Topic started by: Paul2 on June 28, 2008, 11:47:44 am
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I just found your forum and have a question. My ENT doctor is suspicious that I could have an acoustic neuroma based on my symptoms. He has suggested doing an MRI. My question is if a person has this type of tumor, will the symptoms start and stop? What I mean is can you have vertigo, tinnitus, ear fullness and sound sensitivity a few days, then the symptoms stop, and then start up again? My wife and I were thinking if you have a tumor, you would constantly have the symptoms. I am very claustrophobic so I do not want to do an MRI unless it is absolutely necessary.
Thank you for any information you can share with me.
Paul
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Paul,
Glad you found our forum - it's a good place to ask questions and alleviate concerns. That said, I can only give you my experience and "guess" as to your answer, which is -- yes, I think symptoms can come and go. I KNOW the vertigo/balance issues can come and go because our bodies can compensate. About the hearing and tinnitus symptoms, I know that my PERCEPTION of their severity changes alot, so I'd say, yes, they can waver also. For instance, when I went for followup 6 months after GammaKnife treatment, I said my hearing was worse, but hearing tests (done at same facility) showed no change from previously.
About the claustrophobia - I hear you. I am only a little claustrophobic, so I was able to grit my teeth and get through it. My second MRI was the morning of the GammaKnife treatment and they had me pleasantly "looped" on intravenous who-knows-what drugs that I didn't even notice having an MRI, although I was awake. The third time I got a prescription for Valium. So...if I were you, I'd really emphasize your extreme claustrophobia (don't be afraid to exaggerate a little) and hopefully they could give you some strong medicine.
If your ENT is correct, it is probably best to get the MRI. Have you read much on this site? Acoustic neuromas (vestibula schwannomas) are almost always very slow growing, so there's usually no big rush. And then there are several options on what to do, including "wait and watch," if you do have an AN.
You might want to wander around this site to see if you think your symptoms sound to YOU like an AN. And perhaps get a second opinion from another doctor.
Keep asking us questions. This is a wonderful group of smart, investigative and supportive folks.
Take care,
Dana
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Hi Paul, and welcome!
As you'll see if you poke around any of the posts here, nothing about AN's is "typical". We all seem to have varying symptoms and to varying degrees. It seems to do with where exactly the tumor is and what it happens to be pressing on at the time.
My only symptom prior to diagnosis was numbness on half of my face - it felt like novacaine wearing off after a dentist visit. It was worse some days than others - sometimes I really noticed it, and other days it seemed like it was going away. I have heard of people who have had tinnitus that came and went also. So, basically, anything is possible with these things.
There are also people here who have a difficult time with MRI's and are able to tolerate them with some medication that helps to calm them down. I'm sure your doctor can help you out with that. Unfortunately, the only way to accurately diagnose an AN is an MRI with contrast. Make sure you tell your doctor about your concerns - I'm sure you can come up with a plan that works. You're certainly not the first claustrophobic person to need an MRI. :)
Good luck to you - and I will keep my fingers crossed that things go well for you.
Lori
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HI Paul-
Just wanted to comment on the MRI - I, too, am horribly claustrophic (can't breathe, full blown panic attack at the thought of being in a small space.) When my ENT requested that I get an MRI, the only thing I was worried about was surviving the MRI. I explained my fear to the ENT and he prescribed Xanax (1 mg, I think) to take an hour before the MRI - it worked like a charm. Just make sure you have a driver, though, as you won't be able to drive for several hours.
I am scheduled for my first follow up MRI in Sept and this time, the neurosurgeon presecribed valium - same effect as xanax. \
Even though claustrophobia may feel "silly", it is very real. Don't let it stop you from getting a firm diagnosis, though - if you do have an AN, the sooner you find out, the more options you will have.
One other thing, my husband was able to stay in the MRI room with me, and he held my leg (don't laugh) the entire time - that also helped.
Debbi, terrified of tight spaces...and not afraid to admit it!
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Thank you for your replies! I thought I would share a little more information. My symptoms started in 2002 with roaring in the right ear, fullness, vertigo and some hearing loss. The doctor said it was inflammation and prescribed prednisone. But over the years, the symptoms have become worse. My doctor sent me to a neurologist for the vertigo and balance problems in 2004. The neurologist did an MRI with contrast of the head (which I sweated through!!). The neurologist had no answer for my symptoms. Last week I went to an ENT who was the first one to bring up the possibility of the AN. I contacted the hospital who did the MRI in 2004 and asked wouldn't it show a tumor if it was there? Their answer was only if it was a large one, as they did not focus on the ears. I keep asking my wife "why didn't they also focus on the ears when the did the MRI in 2004?" and driving her crazy about it! Since 2004, my family doctor has told me all my ear symptoms are caused by sinus and allergy problems so I have been trying numerous allergy and sinus meds, and yet continue to have the symptoms. I've even had to take a tranquilizer because of the stress over the ear symptoms.
I appreciate hearing from everyone!
Paul
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Paul,
Yes, unfortunately, as far as I know, they have to know what they're looking for when they do an MRI so they can focus on that area. BUT you should still seek out your old MRI and have someone look at it. You have the right to access to your own medical tests.
BTW, the MRI does need to be done "with contrast" to show an AN.
Sounds to me like you really should get another MRI. We were all told "acoustic neuromas are rare" (a year ago I was told one on 100,000), but HERE WE ALL ARE!! Your symptoms are long-lived and disturbing your life; get it checked out.
There are many doctors who don't have much awareness of ANs, so it's not surprising that no one thought of it before.
Do keep us posted.
Hugs,
Dana
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Paul~
I would definitely say that the symptoms can come and go. I told my hubby when we started dating that I would sometimes get food on my face & not know it and to please tell me - that was when the tumor was resting on the 7th(facial) nerve.
Ask for drugs for the MRI - it'll make all OK! ;D
K
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Hi Paul,
The only symptons I had were tinnitus, ear fullness and hearing loss. After a course of high dose prednisone, I feel the ear fullness and hearing have improved. The tinnitus persists.
After two MRIs and a CT, I'm waiting for my next appointment with the surgeon to get the results of the second MRI and first CT on 7/11. Based on the first MRI, he couldn't be sure the growth wasn't just an inflammation until he sees the CT.
Good Luck,
Laura
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Paul - I had the same experience with Dr's thinking that all "ear problems are caused by sinus or allergy problems." I can tell you from experience that they only say this because they don't want to pursue it further or they don't want to admit that they don't know what's wrong with you.
Yes, the AN's are usually slow growing, but in my case, it started growing at a rapid pace and I wasted valuable time getting treated for "allergy or sinus". I highly recommend the MRI (with sedation, such as Valium) and getting a second opinion soon.
Best wishes,
Jan D
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Paul,
I was treated for sinus problems and headaches for 15 years. Remarkably, since I had my surgery, I haven't had a single headache for sinus problem. Hmmmm...I think maybe it wasn't my sinuses all those years, don't you? ;) Not to say that your symptoms are definitely caused by an AN, but many of us have been misdiagnosed in the past so it's not unheard of.
Don't worry, I'm sure your wife doesn't mind you driving her crazy! That's what spouses are for, right? :D
Lori
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Hi Paul,
I had full ear feelings, hearing loss (word recognition in particular), LOUD ringing and dizziness. It varied and still does. My AN was diagnosed in March and 3 weeks ago had Cyberknife treatment.
I am VERY claustrophobic!!!!! I have had 2 MRI's WITH contrast and a CT scan. I did one MRI without sedation and it was difficult even though it was supposedly an "open" MRI. The next one was really tight, but I had "happy" pills. It was a lot easier. There was a mirror in there to see out, which I was thankful for. I addition, it is softly lit and has a nice refreshing breeze. It is a bit noisy, but I did't care much. :D You can talk to them and they can talk to you. Believe me, if I made it through, anyone can! ;D Just tell them you will need something for claustrophobia. There are a lot of us out there. They have heard that many times before. My specialist and the MRI people asked if I was claustrophobic even before I told them.
If you do have this, you did find a good site!
Best of luck to you and please keep us posted.
Take care,
Mary 8)
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Hello to all of you! This is Paul's wife, Lynne. I want to thank you for helping him with the questions he has asked. It is wonderful to have a group of people like you who will share their experience. I do want to say that "NO" he is not driving me crazy! He has really been having a hard time with these symptoms and trying to get someone to figure out what is going on. One thing he didn't mention was that he is real sensitive to sound. For instance, if we are at a place where there are a lot of people talking, it really bothers his ears. Is sound sensitivity a symptom of AN?
Thanks for being so supportive to my husband. We both appreciate the information.
Lynne
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Lynne and Paul,
The sensitivity to sound is all too common and I had this too, and more symptoms that I care to remember and ALL were poo poo'd for 12 years as anxiety, sinus, old age (40's), age-related hearing loss, fibromyalgia, too much yeast in my system, etc.--sigh! I remember in 1991 I had a "red flag" moment where I didn't recognize my surroundings and my doctor suspected a brain tumor so ordered MRI but without contrast. Had it been with contrast I believe it would've been there, albeit very small. Many of us have the same story of how it took YEARS to diagnose, the frustration, sometimes humiliation, the patient goes through knowing there really is something wrong, but no one is getting it! I'll never forget the day I was told it was a brain tumor and how relieved I was!!!!! No one wants a brain tumor, but all the years of being told "it's nothing" and turns out to be "something" can be an odd comfort. At least NOW we know what IT is.
I hope for your husbands sake the MRI shows nada, but that wouldn't help him feel better, but at least you can cross off the worst case scenario and move on to other possibilities as there can be many causes for his symptoms. Hang in there, go for the MRI, close your eyes and don't even think about it.
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Hi Paul and Lynn,
Some sounds drive me CRAZY! I can't stand some music I used to love, especially live music. :-( One thing to see, out of curiosity if your hearing is garbled in your bad ear when listening on a cell phone. That is common with ANs. I have had to switch ears due to the distortion of the sound. Numerous noises don't sound "right".
Mary 8)
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Hi Paul and Lynn-
It is apparently common to get "hypersensitivity" in your stronger ear (or in the case of us SSD folk, in our only hearing hear.) Certain noises and pitches can be quite uncomfortable and even painful. Again, not an uncommon symptom for someone with an AN. This particular sensitivity happened gradually to me, coinciding with gradual hearing loss due to the AN. Now, being SSD, I still have some hypersensitivity, but it seems to be getting better - or maybe I'm just adjusting! 8)
Debbi
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I recently went to a Hard Rock Cafe for the first time. Maybe it's my old age or my AN but, the music was a bit loud for me... ???
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Hi, Paul -
I'm tuning in a little late here (was out of town for a few days) and haven't had time to read all the other posts - so if I'm basically repeating what everyone else said, my apologies.
IMO from what you are describing you have "classic" symptoms of an AN - if in fact there are "classic" symptoms. Everyone has a different AN journey, but there are certain commonalities - and it sounds like you may very well have an AN.
The only way to know for sure is to have an MRI with contrast.
If you need "drugs" to get through the MRI, take them.
Jan
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Hi again, :)
FYI....My hypersensitivity is in my AN ear. It was there before I had most other symptoms. I kept telling my husband the treble on the stereo did not sound right. That was even before I had the distortion in the cell phone and way before I even knew there was such a thing as AN. I didn't even have tinnitus then. Because the sound has gotten progressively worse in that ear I can look back and see the progression. My AN doctor who specialises in ANs said distortion in the sounds in that ear are common. They can be very annoying making some sounds quite strange.
I am now functionally deaf in that ear but I can still hear, just can't understand words and sounds I do hear.l
The really good news is if you have it, it is not cancer, it grows slowly - in the vast majority of cases, and is treatable. Hopefully, you have something else that is easily fixed, but if not, we all are hanging in there, even with a sense of humor - may I add. Much worse things happen in this world and I figure if this is the worst thing to happen to me, I am one lucky person.
Take crae,
Mary
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Hey Paul,
All sounds so familiar and yes, my symptoms come and go...with the exception of the tinnitus which is there 24/7. About the MRI, I have another one scheduled for mid August - already have my Valium sitting here ready and waiting. All you have to do is ask the doc for one...
Take care and let us know what you find out.
Cindy
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Yeah, Paul....go with the drugs! 'Cause you gotta do an MRI, with contrast, to find out if you have this brain booger or not. Simple as that. I am one of the lucky ones who have no problem with the MRI. It do find it annoyingly loud however. Didn't know that MRI's were noisy. If they get you nicely mellowed out, earplugs in and all of that, you might just sleep through the whole thing! Gotta do the MRI, Paul.
Sue in Vancouver USA
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Hi Paul,
Sorry I'm a little late scoming to this thread but welcome to this forum. As you can see, the people here are ready and willing to help in whatever way we can. I have to agree with every one. The symptoms of an AN can waver or come and go, at least in severity. My hearing has gone up and down a couple of times and been documented by auditiograms, and the tinnitius in my ear changes with the weather, allergies and the level of stress I'm feeling on a particular day. Although I do not have claustrophobia, I reqeusted an open MRI because I was feeling anxious about being closed in. Maybe this type of MRI, along with some Valaium or something would help you. Wishing you the best of luck. I hope you dont' have an AN as it is a lousy diagnosis, but if you do, this is a great place to be for support, information and venting when you need to. We are here to support you in whatever way we can.
Wendy
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The only symptom I had for 25 years was hearing loss on one side only. Then I began to have facial twitches around my eye on that side, and these would come and go. They started one evening in summer and continued almost daily, then became less frequent as the next two years went by, before an MRI revealed my tumor.
Other symptoms I had that would come and go included: eyelid swelled for about 2 weeks at a time, go away for a couple of weeks, then swell up again. I would become off balance at times while walking and get nauseated with a headache. I also began to have pains in my left jaw, mostly at night. A coupe of times the pain was almost unbearable when I opened my mouth wide (like in doctors office one time). I also had a metal taste in my mouth for awhile, then it went away. Close to the time when I finally had the MRI done I was having headaches waking me up around 4am daily. When I got out of bed the headaches gradually went away.
My brainstem was bent and this is why I got off balance while walking.
One symptom I did have that was constant (besides the hearing loss and ringing in ears) was a numbness in the eyeball on that left side. I found out that my eyeball was numb when I was putting some eye drops in it one day and it ran all down my cheeks. I was also having a problem seeing out of that eye at the time.
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Hi,
I'm a new member and newly diagnosed, yes symptoms come and go.
LisaP :(
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Update for all of you on Paul. The ENT called and said "he thinks he may have Meniere's disease" so wants to put off the MRI for now and try a diuretic for a month to see if it helps the symptoms. This sounds so stupid to me. Paul is frustrated because he has heard of people who take diuretics that don't need them and it messes up their electrolytes. The doctor is basing his diagnosis after reviewing a hearing test from a few years ago. He said that Paul's hearing has improved some and that Meniere's disease is the only vestibular problem that has fluctuating hearing loss. He said there's no test for Meniere's so he wants to try and treat it first before doing an MRI. Does this make sense to anyone or should we go for a second opinion? What do you all think based on Paul's symptoms that come and go?
Thanks!
Lynne
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Lynne -
I don't know much about Meniere's disease, just that the symptoms are very similar to acoustic neuroma symptoms.
Hopefully others on the forum will know more than I do and will respond soon. Have you done an internet search on Meniere's? You might be able to find out more information about it.
Jan
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I looked into meniere's some time ago as that was "thrown out" as a possibility for my symptoms, as was hydrops by one ENT. Not knowing about meniere's I looked into it and came across the treatments. From the many articles I read on diuretics, low salt (really low salt) diets prescribed for the treatment don't seem to help with MD, it's controversial.
I don't understand why the doctor doesn't just go for the MRI to rule out AN. Probably an insurance thing or he's being conservative in his approach to your symptoms which can be frustrating to the patient as it can be a slower process to a real diagnosis.
If your gut is telling you to seek another opinion then perhaps you should listen? But, if it is an AN remember they are slow growing so there's really no need to hurry for the diagnosis and if he has the patience to proceed with a more conservative approach perhaps he can grin and bear it? I do understand the concern on his part if he suspects at all that it is an AN as it can be frightening.
In regards to taking diuretics and electrolyte imbalance, there are foods you can eat/drink to help with this so you can control it.
Good luck and let us know how he has decided.
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Hi,
The doctor may be correct and I hope he is. However, my hearing test was fine 15 months ago, now I am functionally deaf in my right ear. The hearing does fluctuate. As I see it, it doesn't hurt to get a second opinion. With complex symptoms like these, it seems an MRI with contrast would at least help pare down the possibilities.
Good luck,
Mary
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I underwent an open MRI for the initial diagnosis of my AN. The open MRI is a total breeze for me compared to the 2-3 "closed" MRIs I've had so far. Do you have trouble with open MRIs?
The suggestion to try to use the phone on the affected ear is right on. I always answered the phone using my left ear, so it came as a total shock to me that I could not understand anything on the phone with my right ear after I was diagnosed.
Please go with your feelings about not putting off the MRI - you need it now. Also, a second opinion would be wise.
Good luck!!!
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Regarding fluctuating hearing tests -
In February I scored a whopping 12% word recognition on my AN ear. Shortly before my surgery, I scored a 40%. I just think the second tester had a lot better diction...
Aside from the hearing loss, I had tinnitis and fullness that would come and go. I am sensitive to noise in my good ear, and am always the one saying "can we turn that thing DOWN??"
One very unusual side effect of my surgery is that the tinnitis is very diminished or possibly gone. One time it's good to be rare..apparently that doesn't usually happen...
best wishes,
Tammy
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Hi Paul
I still think that you should have an MRI done, if it was not for my primary care doctor, she was the one who sent me to an ENT because my doctor also wanted to know why I was having symptoms. You have to be your own voice and if you feel that you need another MRI then tell them.
Still a newbie
LisaP :)
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I must say in the past year, I have had 5 hearing tests....no two the same, getting better and worse and better again. 4 different people did them, all at ENT offices, 3 with doctorates. I can TELL my hearing fluctuates. Some days I can understand quite a bit in my bad ear, other days I hear just a little and yet understand NOTHING. It is greatly variable.
Take care and good luck,
Mary
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I'm definitely with everyone else on this about getting a second opinion and another MRI. When I first started losing my hearing my doctor said it was hydrops and I did the diurectics for a while and also some steroids which didn't help. My doc also said that it could turn into Meniere's disease. When I lost more of my hearing a few years later I wish I had done another MRI instead of waiting another 10 years.
If another MRI shows nothing then at least you will know instead of wondering if it is an AN. Good luck and keep us updated.
Julie
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Hi Paul,
I can relate to so many people on this post about symptoms that come and go. I feel like I have "good" and "bad" hearing days which can be a trip on the mind. My hearing tests are usually all over the place, too. But there is one frequency that seems to steadily decline in my AN ear. But, I have had a frequency in one hearing test go from 25 one year, and then the next year it is a 5. Then the next year it might be a 15 and down to 0 the next. I don't think those sound booth hearing tests are always right on. And, do they always use the same words in the word recognition test? I've just about learned all of them over the years. Kind of like the letters on the eye exam. I am also sensitive to loud noises in the AN ear at times. When I watch TV, I notice I have to go up and down on volume because of sound flucuation. I have high pitch noises in my AN at times, but it doesn't last very long. I am in W & W since 2005 so I think I am hypersenstive to a lot of things most commonly associated with an AN when in fact they just might be something normal going on. I would be inclined to have another doctor give me an evaluation if I were you. I think it would be better to err on the side of safety with a MRI. Best to catch these things early, plus all of the guessing and wondering would just drive me mad. Best wishes for getting the answers you need to get peace of mind. And, get the meds for the MRI.
Nancy
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I'm no doctor but the MRI can be done in 1/2 hour and can definitively rule out the AN diagnosis. If the MRI shows no AN, then you can move on to the possibility of Meniere's. I am not sure why it makes sense to put your body through a month-long treatment regimen for a condition you may not have.
The AN diagnosis is quite rare so it is possible the ENT doesn't have a ton of experience with the symptoms. Having spent time reading up on this forum, you may well know more about the symptoms than he does. As others have noted, intermittent symptoms are very common among ANers.
I would consider just telling the doctor, "No, I want an MRI now."
Good luck.
Francesco
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Francesco -
some very valid points. I agree 100%.
Jan
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Some of the more innovative hospitals now have open MRI machines. It's no more confining than sitting on a chair and watching tv. Maybe there's one in your area. Something to consider.
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Hi Paul,
Other than the hearing loss and occasional tinnitus, I have been lucky with not having too many symptoms. Only the hearing loss is permanent. All the other symptoms (dizzy, loss of balance) just visit me briefly for a small "hello" to let me know they are still around, and then they leave me for months at a time. I hope you find the answers you are looking for. In my opinion, I wouldn't stop until they can rule in/out an AN for sure. I haven't read all the posts, so you may know by now. As far as the MRI goes, I am a surgical nurse, and sometimes we have to go the MRI suite in the hospital with an anesthesiologist for patients of all ages who have troubles laying still or are claustrophobic, etc. If all fails, they can certainly make you go nighty night for the MRI so they can get a good scan for a good diagnosis. Yes, there are open scanners, but there are downfalls as to what can be seen clearly on them as well. MRI's are small for a reason. Be sure to talk to your doctors to see what is right for you. Only you know what will make you fell better about all of this, and then don't stop until you have the information you need. Good luck with everything!!
Amy ;)
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Amy -
just wanted to say thanks for being a surgical nurse.
I had BAHA implant surgery in March and the nurse who sat near my head and talked to me during the entire procedure was a Godsend. I had local anesthetic and although I didn't feel any pain some of the sounds of the surgery were a little freaky to say the least. My nurse was incredible and did a great job of taking my mind off what was going on. IMO doctors get a lot of the glory, but sometimes patients forget that doctors couldn't do their job without nurses ;)
Jan
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Thanks Jan.... we sure try. Sometimes it's the human factor that can be lost and it's up to nurses to bring the medicine/science and the human needs together. I love what I do because we are constantly learning. Glad to hear your OR RN helped. Most people forget about us because of the meds, and that's OK too :):)
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Be persistant, if you don't get an MRI you will just worry until you do, you need peace of mind. I make a point of closing my eyes right away before going into the machine so I can't tell where I am and it helps. Keep us posted.
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After having survived the tube o' doom yesterday with all the spririt sucking going on, I can say that it did get easier the second time around when you know what's going on. It's still not fun. But as has been mentioned, drugs work and it seems as though doctors don't mind prescribing them -- even the radiologist yesterday admitted that the first time he was shoved into the cylinder of evil, he freaked. So I think it's pretty common knowledge that a lot of people can't deal with it without something to calm them. And Jan, I did it without any rum.
David
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Yep, I've got my valium ready and waiting for my MRI next week! I did ok with the last open MRI, but I'm not taking any chances with a closed one. Have heard numerous folks here say they use a bit of help to get through...
cindy
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I must be the only one who actually enjoys my MRI's.
I have 4 kids - to be able to lie down quietly and listen to music for 45 minutes is almost like a day at the spa! Ok, well, maybe not that good, but close. :D
Lori
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Lori~
That is exactly what I told David before he went the other day!
K
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K -
James just went for an MRI of his back the other day too - I told him I was jealous! But he went to a different imaging place than I did and they didn't have headphones and music at his! Still, the nap would have been worth it even without the music! :D
Lori
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I must be the only one who actually enjoys my MRI's.
I have 4 kids - to be able to lie down quietly and listen to music for 45 minutes is almost like a day at the spa! Ok, well, maybe not that good, but close. :D
Lori
Only one kid here, lori, but feeling the same way!! relaxing, quiet time...about fell asleep....
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OK, do you guys have more comfy MRI tables than I do?? I'm fine with being inside the machine and could probably fall asleep were I not stuck flat on my back on a hard table. They put rolled up towels under my knees but that did little to help my back. I actually had a back muscle cramp while on the table, being told not to move. I'm thinking they should let us lie on that swedish foam that they make matresses out of. I also think that would be a good idea to lie on during surgery - it would mold to your body and let you lie on your side without wrenching your head for 8 or so hours.
Tammy
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hi tammy,
The MRI table I was on had a soft little foam padding and a big pillow for under your thighs to your feet. And, in the surgery dept. I work in....we do have those mattresses made out of the tempur-pedic foam. Still doesn't make it fun to go to surgery, but much better than the past ;)
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I'm with Lori on ther relaxation attributes of the MRI tube, but, since my only child is almost 29, probably for different reasons. :)
I approach the MRI scan as a necessary chore that is painless, so I take it in stride. It helps that I'm not claustrophobic, so I don't require any drugs to tamp down anxiety. I don't use the music because I like to think a bit while encapsulated. Actually, the time in the MRI capsule (about 40 minutes) goes very quickly. It's kind of boring, in some ways. Don't get me wrong...I'm quite happy to be taken out of the machine and be done with it. It just isn't a big problem for me. I can understand why it is for many folks, especially if you have even a hint of claustrophobia. If Valium is needed to make the experience easier, I see nothing wrong with that. I would take it if I needed it. I'm just glad that I don't and wish it was as easy for everyone, since MRI scans are a part of the AN patients life.
The MRI table in the facility I use is not especially supportive but they put a wedge under your thighs and knees and the head pillow is adequate. I've never experienced any real discomfort on the table or later, because of it. Maybe some MRI centers actually attempt to make patients comfortable while others don't try very hard...or maybe I'm just oblivious. Could be. :).
Jim
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As a musician I was fascinated with the sounds (however muffled by ear plugs) and found that as long as I concentrated on listening I was fine. I had four of them in one week. Don't ask.
M
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Had my MRI follow-up MRI today - took a Valium (first one I've ever taken) - I will definitely take one for any future MRI's I may have. I am not really claustrophobic, but just the anxiety of needing to lay that still (always get an itch, etc) does me in a bit. I did keep my eyes closed the whole time so as not to even see that I was in very close quarters - my last MRI was an open one and this was quite different, but I did "almost" take a nap.
cindy
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Paul and Lynne,
I was just rereading this thread, and it struck me that the one point that none of us made, but that we all emphatically KNOW, is that there are LOTS of doctors who have very little knowledge about or experience with acoustic neuromas. In addition, it's my anecdotal experience that ENTs, for some reason, are particularly unknowledgeable about them and, probably because they deal with so many 'head' symptoms, they often lean towards a sinus problem, or something like Meniere's.
I'm saying all this just to encourage you to be avid patient self-advocates and really push for an MRI with contrast if the diuretic isn't alleviating anything. You might even have to go to a different ENT, or find an AN team near you (especially if you live near a large city) and go directly to them to get an insurance-approved RX for an MRI.
Dana
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I'm with Dana on this one. If your doctor won't "prescribe" the MRI, find a doctor that will. Look for a neurotologist or someone who is familiar with AN's. Be pushy if you have to.
Good luck.
Marci (pushy by nature)
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Hi. I have seen this term several times on this forum...What is BAHA????
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BAHA is a bone anchored hearing aid. It can be useful for certain people with single-sided hearing loss. From what little I know, it is kinda like a small titanium screw that goes into your mastiod bone (right behind the ear) and by bone conduction, it carries sound to your "good" ear and gives you the sense of hearing from your deaf side. A lot of people with AN's can be good candidates. Your neurotologist would be helpful in explaining.
Amy ;)
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tenai98 -
Amy is right.
Here's a link to pictures of my BAHA http://anausa.org/forum/index.php?topic=6634.0
And another link that explains what it is and how it works in detail.
http://www.umm.edu/otolaryngology/baha.htm
Jan
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Hi Paul and Lynne,
I have to agree with others that it would be good for your doctor to order another MRI at this point. You mentioned that your 2004 MRI was done with contrast, but I believe it's also important for the MRI to be done with a focus in the IAC (internal auditory canal).
I also have to agree with what others have said here in regards to ENT's being apprehensive about considering AN's as the source of many AN-like symptoms. Whether it be by either their lack of experience with AN's, or just a hesitancy to mention this as a possible diagnosis, I had this exerience with two different ENT's that I saw over the course of a year before I was properly diagnosed.
My initial symptom was fullness in the ear, followed about 6 months later by tinnitus. I consulted with both ENT's at the oneset of the ear fullness, and again when I got the tinnitus. Both did hearing tests at the first consultation and again 6 months later. (I had gone to see two hoping at least one could find a reason for my symptoms.) I mentioned to both at the 6 month visit that maybe it was an acoustic neuroma, since I had started doing research. BOTH of them responded that it couldn't be because my hearing was still perfect!
It was only by talking to my primary care physician that I was able to get an MRI ordered. She initially thought it might be Meniere's, but when I presented her with my packet of AN research (which she appreciated), she felt strongly about the MRI, which revealed a 1.6 cm AN. (Needless to say, both ENT's were shocked when I shared the news with them - which I did in an effort to save someone else from having a similar experience.)
I really hope that you will be able to get another MRI, and also really hope that it doesn't turn out to be an AN. But either way, know that you have found a great support system here.
All the best,
Nancy L
(Jan - I'm a little late for my nap today because I was enjoying reading the 10 page thread that starts with your BAHA pics! I may have more questions for you and other BAHA wearers out there - but that will be another topic!)
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Nancy L -
glad you enjoyed the BAHA reading, there are lot of other posts on the forum about BAHAs also, but feel free to start a topic and ask your questions, or PM me if you'd like.
I have to say that I continue to be amazed by my BAHA on a daily basis and think it's one of the best things I've ever done.
Jan
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I must be the only one who actually enjoys my MRI's.
I have 4 kids - to be able to lie down quietly and listen to music for 45 minutes is almost like a day at the spa! Ok, well, maybe not that good, but close. :D
Lori
I know this thread is a bit old, but I happened to look at it and I'm wondering what kind of MRI do you have, because when I have mine, the darn thing is so noisy, I don't know how you can sleep or enjoy music??? I have the ear plugs in, and mine is not that uncomfortable to lay on, but the new machine they use does the procedure quicker, but it's louder, if you can believe that. Clang, bang, thud, click, and I don't know what else goes on, but not very good for listening to music, I don't think. I am one of the lucky ones that it doesn't bother me to have one done. At least I can have that small victory, I guess you'd say.
Curious Sue in Vancouver USA
Sue
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Sue~
I'm am totally with Lori - and YES, it is VERY noisy, but just being by myself and laying down...those two things add up to relaxion and sleep!!!!! ;D
K
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Like Cindy, I don't open my eyes during the MRI. It is loud for sure. Last time I had the music, and it helped during "quiet" time. Since I have been W&W for awhile, the MRIs are shorter, and I like that. When I had a longer time in the MRI once, right in the middle I told them I had to come out. They pulled me out, and I took some deep breaths, and then they sent me back in. Helped, and it didn't affect the results. I think if you need or want Ativan, etc. you should ask for it. Nancy