ANA Discussion Forum
General Category => Inquiries => Topic started by: sybil on March 03, 2010, 09:15:17 pm
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Hello. I have been "creeping" on this site for several days, and have finally decided to post. I have not been diagnosed as having an AN, but think it is a possibility and I have my first ENT appointment on Friday. Whatever my problem turns out to be, I wanted to take the opportunity to tell everyone here, "Thanks!". After reading so many of your posts I feel completely prepared for my appointment and believe that I am armed with all of the right questions to ask.
Just for some feedback, several years ago the hearing in my left ear started to fade in and out. My grandmother is deaf, so I just thought it was going to happen to me. Over time, it started to get worse and I have a ringing/buzzing in it quite frequently. It has even woken me from deep sleep.
About a year ago, I started to have some numbness in my head (like someone is squeezing it), stabbing pain in my eyebrow, and occasionally when I blink, it seems that my eyelid doesn't want to open back up. I saw a doc about the numbness and he said I must have a pinched nerve somewhere. Over the last few months, changes have been happening....quickly! There is a pressure in my ear that is becoming almost constant. It sort of feels like there is something blocking my ear and there is someone in there trying to push their way out! I am also getting an occasional stabbing pain deep in my ear. It is very quick and then over.
I do sometimes feel light-headed, but I just thought maybe my vision was getting worse also. Yesterday, the left side of my face felt almost like it was burning, and my skin felt like it hurt. Yep, my skin! It was sore to the touch.
I had a thorough physical in early February. I told my doc about my ear and he said it looked fine. He also did a lot of bloodwork (11 tubes worth!) and it all looks good.
Anyway, sorry about the length of this. I am happy to hear any opinions and advice. I can't wait to finally put all of these symptoms together in one place and hopefully get it figured out! Who knows what they'll find in my head; a bug, a missing sock, an acoustic neuroma, or maybe Jimmy Hoffa!
Thanks again!
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Jimmy Hoffa :D Sybil, I like your sense of humor ;D
Although there are worse things in life, I'm hopeful you don't have an AN.
The only way to tell for sure is with a diagnostic MRI - with gadolinium contrast is best. I don't know if your ENT is going to prescribe one on Friday, but you may want to push for one.
Unfortunately ANs can go undiagnosed for years because the patient doesn't get sent for an MRI.
Best of luck. Please let us know what your doc says.
Jan
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I agree with Jan especially the part about pushing for the MRI. If your doctor says lets watch and wait, tell him/her that you want the MRI now for your piece of mind. The MRI is an non-invasive test that takes about 45 minutes. At worst some people are uncomfortable taking them but most, myself included, find it a harmless easy medical test -- a bit noisy, but completely painless. Don't take no for an answer, tell the Doc you want an MRI and if they don't prescribe one for you let them know you will seek another doctor who will.
Good luck
Neal
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The MRI is an invasive test that takes about 45 minutes.
We know what you meant to say, Neal! MRI is non invasive. Just sleep through it (I did).
Push push push for the MRI. He may want to do a audiogram also. Hope you don 't have an AN, but you've definitely got something going on!
Glad we can be of help without even realizing it!
Maureen
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Sybil ~
I want to welcome you and I'll gladly join the chorus advising you to be resolute in asking your doctor to order an MRI with contrast. As you've no doubt gathered by now, ANs can be problematic but are benign and treatable. If you end up with an AN diagnosis (via the MRI), we'll be here to inform, advise and support you. If the MRI shows nothing or something that is not an AN, we'll still be here and we'll still support you in whatever comes next. Thanks for taking the time to read and now, to post in the AN forums. We'll look for your next post and your MRI result.
Jim
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Thanks to all of you for the warm wishes!
I had my appointment today, and I don't feel any better now than I did before. I had made a list of all of my symptoms that I thought would be significant, but the doctor didn't really let me get through them all.
I had my hearing and pressure tested. I do have some decreased hearing in that ear, but it is minimal. No remarks made about the pressure or any numbers given. When he looked in my ear, once again, I heard, "It looks fine". (no sign of Hoffa)
He is sending me for an MRI, but I have to wait for the office to call me to schedule it.
He said he believes it may be eustachian tube dysfunction and try decongestants. I do not have allergies or sinus infections. My symptoms started several years ago, and would eustachian tubes cause the other sensations in my head and face?
He also briefly mentioned MS, but didn't really think that was it either.
To sum it all up, he said we may never know what this is and I'll just have to live with it. ? Take ibuprofin for the discomfort. ? Oh, and MRI. Hmmmm.
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Hi Sybil .....
Welcome to this forum, even though I pray you do not have an AN.
I am so sorry you are being blown off by the ENT ..... your symptoms are real, no matter what their cause and it is his responsibility to get to the bottom of it while reassuring you along the way. It sounds like he is not terribly enthusiastic about either.
IMO, I would not wait past next Tuesday to hear back on the scheduling of your MRI. If you do not hear by Tuesday, call them again. You know the old squeaky wheel thing. Also, be sure it is ordered with contrast. If it is not an AN, you still need to push for a definitive diagnosis ..... "just have to live with it" does not cut it for me!
Thoughts and prayers. Let us know what you find out.
Clarice
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Well, I have an MRI scheduled for Thursday, with and without contrast!
Maybe I'll start to finally get some answers. If this doesn't show anything, I plan to keep looking!
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Yeah! Keep us posted on the results.
Thoughts and prayers.
Clarice
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Good please let us know what the MRI shows...its the only way to know for sure!
Good luck!
Liz
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Good luck on your MRI. We will all be thinking of you. Let us know how it goes and know everyone on this forum is here to help if you need it (hopefully you won't). :)
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Hi Sybil,
I am glad to read that you have an MRI scheduled. That should resolve the question about whether you have an AN (or MS, for that matter). I also want to let you know that you are welcome to stay on the forum even if it is not an AN. We have a variety of misfits who are members even though they don't have an AN, so you will fit right in. Strange things happening in your head is really about the only criteria for membership. ;)
Steve
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Glad you have an MRI. Will definitely be good to clear this up and know what you are dealing with. I tend to agree with you that your symptoms sound very 'AN' ish. I had reduced hearing in one ear too, and although the doc could tell that I did on some frequencies-he said that overall I had excellent hearing. Since that was my only symptom (that I knew about at the time), I'm lucky they sent me for further testing.
The pain in your eyebrow........is it electric shock like, that comes quickly and leaves quickly? Just wondering if that's Trigeminal pain. Mine was horrible, but was lower down on the side of my face/mouth on the AN side.
Best of luck. Hope you get this figured out.
Adrienne
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This is such a great group of people! Thank you all so much.
Adrienne, the electric shock description is actually a perfect way to describe it! I may use that description from now on. None of my pain/numbness/tingling is constant, it all comes and goes.
Over the past few days, I have developed an ache/pain in the back of my skull on my bad ear side. It is not directly behind my ear, but more towards the low-back-center of my head. I guess I will know soon enough now if there is anything there!
And Steve, there are definately strange things happening in my head. I don't need an MRI to tell me that!
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Sybil,
When I was going through the Trigeminal pain, I was researching like crazy and found this online to help describe it. It fit me to a 'T'. It's actually a write up about Trigeminal Neuralgia (another disorder) but since both are caused by an irritation to the Trigeminal nerve, the outcome is the same:
The trigeminal nerve (also called the fifth cranial nerve) is one of the main nerves of the face. There is one on each side. It comes through the skull from the brain in front of the ear. It is called trigeminal as it splits into three main branches. Each branch divides into many smaller nerves.
The branches of the trigeminal nerve take sensations of touch and pain to the brain from your face, teeth and mouth. The trigeminal nerve also controls the muscles used in chewing, and the production of saliva and tears.
Neuralgia means pain coming from a nerve. In TN you have sudden pains that come from one or more branches of the trigeminal nerve. The pains are usually severe. The second and third branches are the most commonly affected. Therefore, the pain is usually around your cheek or jaw or both. The first branch is less commonly affected so pain over your forehead and around your eye is less common. TN usually affects one side of your face. Rarely, both sides are affected.
The pain is stabbing ("like electric shocks"), piercing, sharp, or knife like. It usually lasts a few seconds but can last up to two minutes. The pain can be so sudden and severe that you may jerk or grimace with pain. The time between each pain may be minutes, hours, or days. Sometimes several pains repeat in quick succession. After an attack of pain you may have a dull ache and tenderness over the affected area which soon eases. However, constant pain in the face is not usually a feature of TN.
You may have 'trigger points' on your face where touch or even a draught of air can trigger a pain. These are often around the nose and mouth. Because of these, some people do not wash or shave for fear of triggering a pain. Eating, talking, smoking, brushing teeth, or swallowing may also trigger a pain. Between attacks of pain, there are usually no other symptoms, the nerve works normally, and a doctor's examination would find no abnormality.
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Sybil .....
Adrienne has described trigeminal neuralgia perfectly. 14 years before my AN was diagnosed I had successful surgery (via retrosigmoid approach) for decompression of the 5th (trigeminal) cranial nerve at the brainstem on my right side. Years later my AN was on the left side and blissfully I did not have trigeminal symptoms with my AN. I suffered with the trigeminal neuralgia for over six months (many people suffer much longer before accurate diagnosis and definitive treatment) with sharp, stabbing pains. Just prior to surgery I could not even stand to be in air conditioning because it would trigger an episode (I slept with a scarf around my head for months). Diagnosis was made basically through my symptoms because the enlarged artery and veins at the brainstem, which were causing the symptoms, did not show on an MRI. Fortunately my PCP and neurologist all took me seriously and I received treatment fairly quickly.
What you initially were describing is more like trigeminal nerve irritation, possibly caused by pressure from a neuroma. I had no hearing issues with the trigeminal neuralgia.
Wishing you well on the MRI tomorrow. Let us know what you find out.
Clarice
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Sybil -
good luck with tomorrow's MRI.
Hope it's "clean".
Jan
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Well, had the MRI with and without contrast. The radiology tech said that it would take two to three "working" days to read the results and send to my to my doctor. She also said that she didn't notice anything out of the ordinary. So, I guess I just wait for the final word.
Strangely, I have mixed feelings. A clear MRI would be good news, but at the same time, I'll still have no answers. What next?
Thank you all so much for your support and sharing your knowledge with me. This is a swell group of people! ;D
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Call them up and see if you can get a CD of the MRI and the Radiologist's report... I think my location was able to give me the CD and report the next day. That way you can see/read for yourself (even if you don't understand it all)..
Here's hoping you get some answers..
Regards,
Brian
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Sybil ~
To add to Brian's suggestion:
There are online medical dictionaries available (free) that you can use to decipher some of the medical argot in the MRI report. Here's a link to just one of them http://www.online-medical-dictionary.org/ (http://www.online-medical-dictionary.org/). Good luck!
Jim
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Hello, everyone! Well, Tuesday has come and gone and still no word from my doctor on MRI results. Is no news good news?
How long do you think I should wait before I call him?
As always, thanks. You guys are the best!
Oh, yeah, new symtoms. The last week, it feels like it takes the bad ear side of my face longer to wake up than the good side. It's just a feeling. I looked in the mirror and both sides look the same. Sound crazy?
Also, I feel like someone has poured warm/hot liquid over my bad ear and that side of my face. It's not constant, it comes and goes. Any else?
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Sybil -
In my experience docs call PDQ when there is an "issue" with an MRI.
But you never know.
If you don't hear from your doc by Thursday morning, I'd call him.
Jan
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Yep, call on Monday.
Actually the radiology tech did a boo boo. They should NOT say anything.
Wow, think of some of the things they see......I know it's nerve wracking waiting. Heck call tomorrow!
Maureen
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Well, I still have no news. I am so frustrated!! >:( I have called my doctor's office, no return call. The person answering said, "Hmm, it's been a week. We should have gotten that back by now. Let me look and the doctor will call you back."
I have called the hospital, first to make sure that the MRI was even sent to my doctor, and second to request a copy. All I get from the hospital is voice mail. I have left messages, and they don't call me back!
What in the world?! I'm not sure I can handle another weekend of not knowing! The past week I have been waking up in the middle of the night and early in the morning with terrible headaches on my 'bad' side. I'm sure the stress of not knowing isn't helping!
Thanks for letting me vent.
Syb
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Sybil ~
Venting is not only allowed here, in your case, it's encouraged!
In my opinion, your doctor is being quite insensitive. This waiting is unnecessarily stressful. I would consider calling his office every single day until you receive a proper response. If the receptionist complains, tell her that this is critically important and you only need a few minutes of the doctor's oh-so valuable time. After all, you are his patient and his giving you the results of your MRI scan is hardly a favor. Meanwhile, know that we're all totally sympathetic and many of us will be praying for you.
Jim
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Looks like I will have to find another club to join. Doctor called and said that my MRI looked fine to him. He said to find a neurologist and have my hearing checked again in three months. He then wanted to know if the pressure in my ear was gone. ? No! It's been there for seven years!
Anyway, I guess I'm on my own now. I certainly don't feel better, actually I feel worse. I am getting ready to start a new career, which means a new positive chapter in my life. Can't I do it and feel good? No one wants to have a brain tumor, but dam*, I would like to know what is going on and not feel like I'm nuts.
One final question for this bunch; It appears I have some neurology symptoms and obvious ear problems, any idea on a doctor I should look for? Neurologist or otoneurologist or neurotologist? I don't even know the differences in all the specialties. I am lost and confused and discouraged.
Thanks again to all of you. I wish you all peace, love, and good health. Please take care.
Syb
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How stressful this must be for you! Was the doctor saying there was nothing on the mri? You definitely need to see someone else. The first doc I saw was a neurotologist.Then a neurosurgeon. You need to get some answers. I wish you luck! Keep us posted.
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Sybil -
congratulations on NOT have an Acoustic Neuroma.
I'm sorry to hear that your issues are still undiagnosed though. This must be very frustrating.
If it were me, I'd consult with a neurotologist. Here's a link that tells you what an otologist/neurotologist is http://www.umm.edu/otolaryngology/otolo_neuro.htm
Jan
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Hi everybody,
I thought I'd piggyback on this thread, because I'm not diagnosed either. I *am* scheduled for an MRI mid week, and starting to panic a little bit.
Basically, I had hearing loss, my GP sent me to an audiologist at the hospital, and she said I need a hearing aid (one ear only), but first needed to see an ENT for a checkup. I had that checkup last week, and the doctor was very nice and asked a ton of questions. I think most of it was nice chit chat, but now I'm replaying things in my head and wondering if he was asking for symptoms.
So he said (and showed me a model of an ear and explained it) I needed to have an MRI to rule out this ear tumor thing that happens sometimes. I don't think he used the term acoustic neuroma, just ear tumor. LOL. And then I'm scheduled to see him in two weeks for the results. If there's no tumor, I go for a hearing aid.
At first, I dismissed the idea of an ear tumor and didn't worry a thing about it. Then I decided I was curious about it and googled, and ended up reading all about this. So I've worked myself into a bit of a state, and am wondering a few things...
First, do you think it's standard operating procedure to send a new patient who needs a hearing aid for an MRI? That seems kind of expensive. Do they do that for everyone, or is there something he wasn't telling me? I'm 50, female, in otherwise okay health.
But let's review the symptoms, which now are starting to form into a jello in my head (like yikes!):
--hearing loss in one ear, pretty much deaf in the higher frequencies. This has been going on for I don't know, a couple of years maybe. For the longest time I thought people were mumbling and I was just annoyed. Then I started having difficulty understanding *some* sentences on TV. No matter how loud I turn it I can't get certain things. I can hear it (I have a good ear), but it's garbled. So I occasionally turn on closed captioning and read it. I have DVR, and at first I tried to avoid closed captioning because I was afraid I would get a lazy ear and now I have. Then I started being unable to understand a thing when I'm in the back seat of a car. Everybody up front...mumbling. LOL.
It took me awhile to "get" that it's me, not the whole world with marbles in their mouths. Oops. That's my big symptom. But now I'm thinking of others that I have basically been poo poo'ing.
--dizziness...once in awhile I just get this attack of dizzy where the room feels like it's spinning. It's over in 30 seconds and I'm fine. And it maybe happens once a month, something like that. Not regularly.
--balance difficulties...Um, I'm a clutz and always falling over stuff. A month or so ago, my doctor gave me some trazadone for insomnia (I had taken it years ago and it helped and no side effects). It about killed me, and I think my doctor thought I was being dramatic. When I would walk down the hall, I was like a pinball, crash into the right wall, then that would send me bouncing and off to the left wall and back and forth, just crashing into the walls. It wasn't funny but yet it was because it was just so extreme and ridiculous. I would bend over to tie a shoe/fill the cat bowl/whatever and almost go into a somersault. I just would lose my head and start to fall over, but luckily caught myself with my hands before any damage. And until I got the drug out of my system, I stopped bending over.
My doctor couldn't understand how I could have such an extreme reaction to a drug many use, and esp. since I'd used it before without incident. Now it's got me wondering...
But I went off the trazadone and that got better. However, I still do stumble and kind of trip over my own feet sometimes. I keep thinking that the way I'm going to die is fall and break my neck and they'll find my cats eating me or something. Seriously, it's enough of a concern that I'm a little worried about taking a tumble and breaking something other than a vase.
--for the last few months, I've been getting an earache. It's a minor earache and it comes and goes (mostly goes), but it was enough that when I was in my GP's that day, I said do I have an ear infection? And she looked and said my ear was fine. When it hurts, if I tug on my earlobe, that increases the pain. I've never had an ear infection, even in childhood. So I don't know what that discomfort is about.
--here's the one that's got me scared - over the last several months, maybe a year, I've had some incidents where this side of my face just kind of goes numb. Mostly my cheek area. It's like it would itch, but then I'd kind of scratch it and couldn't feel myself scratching. When this has happened, it was creepy beyond all creep, and I wondered what the heck? You know that horrible feeling when your hand goes to sleep from sitting on it, and it takes a few minutes to wake up, and it's like bugs are crawling? It was kind of like that, but much less intense. No bugs crawling, just slight itch and couldn't scratch the itch. And a few minutes later, it was fine. Given what I've read about facial nerve involvement, you can probably understand why all of a sudden I'm thinking back to the numb face thing, and going OMG, was that *something* instead of nothing?
I think that's about it for my "symptoms." I know, I know, wait for the MRI, and I really have no choice. But I'm one of those people who likes to worry any chance I get. ::sigh::
I have no idea if this contrast is to be used; the order just says inner auditory canal or something like that. I'm hoping they'll send me a copy of my MRIs and report so I can know the answer without having to wait for my dr appointment.
Thanks for listening, I know I'm a jabber.
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Oh I forgot to add I do have ringing in my ears. I don't know if it's one ear or both, and oddly, it doesn't really bother me. It comes and goes, and a lot of the time, it's there in the background, but I don't notice it unless I think of it. Then I hear it, but soon I tune it back out. I don't know how long I've had that, maybe a year or so. or maybe forever and I never noticed it.
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Dood -
you definitely have symptoms that can be associated with an Acousic Neuroma, but nothing is definitive until you have a diagnostic MRI.
Sounds like you're going down the right path. I'm hopeful you don't have an AN.
Please keep us updated,
Jan
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Thanks! LOVE your sig...that's just fabulous.
I'm studying MRI scans...LOL. I hope I can get a peek at the screen before I leave and have a better idea. These seem pretty easy to see on MRI.
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Doodlette .....
Welcome to this Forum. Yes, your symptoms are seemingly consistent with an AN, but there can always be other reasons so try to relax until you have the results from the MRI. You mentioned you do not know if the MRI is with contrast or not ..... call and check before you go and insist that the order be written with contrast or the MRI is quite meaningless for diagnosing an AN.
The reason for ordering an MRI when going to the doctor for hearing loss is because you have single-sided hearing loss ..... a big tip-off for ANs. I would not pay for a hearing aid until after the results from the MRI. If it is an AN, whatever treatment you choose will very likely change the degree of your hearing loss. I had 80% hearing (20% loss) in my AN ear, 100% in the non-AN ear. Post surgery I have 20% (80% loss) in my AN ear. However, with a high-end digital hearing aid it has been a huge improvement and I have no problems hearing in one on one situations. Still have problems in a noisy environment, e.g. restaurants, large crowds, outdoors.
Best thoughts and let us know how you are doing.
Clarice
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Thank you. I'll call them tomorrow and try and find out about the contrast. I can't understand why doctors would order without. If you're going to spend the money (or your insurance company is), why not do it right from the start? This *is* an open machine.
On the hearing aid, that's not an option until after I see the ENT again. I get the idea that some of the laws are kind of strict. Either that, or they all just are very careful.
Do any of you have problems with noise? As in being super sensitive to it? I've found it so strange that even though I have this hearing loss, I am hyper sensitive to certain types of noise, usually involving neighbors. LOL. Dogs barking don't bother me, but loud cars do. The bass of loud stereos make me crazy. And then sometimes at home, all of a sudden any noise is like someone poking me with a thousand needles. I have to turn the radio/tv/whatever off and go to a quiet room.
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Doodle,
Did you mention when your MRI was? I may have missed that. I am anxious to see what it shows. I also have the sensitivity to some noises. Not only do I get the needles feeling, it can sometimes make me feel a bit light-headed and dizzy. Sometimes I think I am crazy and it feels good to know other people have the same issues.
I have an appointment with a neurotologist on April 6. We'll see what he says. If you get the good news (no AN), I would like to stay in touch. Maybe we can help each other find answers. But for now, one step at a time and here's hoping you get good news on that MRI!!
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Hi Sybil! The MRI is Thursday. I really do have it in my head that I'm going to know something on Thursday, so I hope I'm not setting myself up for disappointment. My plan is to ask the tech about it, and if s/he says I'm just the tech, then walk over to the screen and look. I hope that's not too aggressive.
Your appointment is the 6th, mine (with ENT) is the 8th. So we're close. I do hope you get some kind of answer, and it's something minor and fixable.
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Dood -
MRI techs aren't supposed to tell patients what their MRI shows. It is highly unprofessional and possibly unethical. In some cases techs can be fired for telling patients what their MRI shows since they are not doctors and this is not their job. So, please don't jeopardize your tech's employment.
The hospital where I have my MRIs gives me a CD of my results if I wait around for about an hour after the test is done. There is nothing that says you can't bring the CD home and view it on your computer. An acoustic neuroma, especially when gadolinium is used in the MRI, will stick out like a sore thumb.
Jan
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Doodlette .....
The hypersensitivity to sounds is called hyperacusis (see http://en.wikipedia.org/wiki/Hyperacusis). Not everyone has it along with their hearing loss. Unfortunately, I do. Even chip bags being opened send me into orbit! I have to really watch myself not to jerk at these noises when out in public ...... but it really jars me!
Re: MRI results. Like Jan, I always wait for my own copy of the CD after the MRI and I go back the next day (or whenever they say it will be ready) for a copy of the written report. The test results and report belong to you, not the doctor. However, you may not want to do this if you will be frightened by what you see or read. Sometimes a doctor can give you a more hopeful or reassuring way of telling you the results ..... that's your call. Jan, medium to large ANs show up like a sore thumb, but I'm not sure how well you can tell a small AN ..... there are also many blips and blobs that are simply innocent, non-essential/normal findings that show on an MRI with contrast. I doubt if the techs will let you look at the screen, which is in a different room than you are for the test.
Good luck on Thursday and let us know what you find out.
Thoughts and prayers.
Clarice
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Small ANs (are well as medium and large) usually show up as "bright" white due to the contrast.
Although they are hard to spot, they can be seen - but Clarice has a good point. The "untrained" eye might miss them. Results are best left to the doctor - either the radiologist who writes the MRI report or the doctor who sent you for the MRI.
If you do have an AN, Dood, chances are the doctor who sent you for the MRI will be calling you fairly fast to tell you the news. Generally the longer it takes to hear from him/her, the lesser the chances are that something has shown up on the MRI.
Tumors, even if they are benign like ANs, tend to get people's attention.
Jan
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One of the reasons I now pick up my CDs on the spot is because I had an MRI on January 23, 2008. My follow-up appointment with the ENT was on February 4, 2008 (12 days later). When I did not have a call within a few days after the MRI, I falsely thought I was in the clear and just patiently waited until February 4th, when I was blown away with being given the diagnosis of a 2+ cm AN. Long story short ..... no, you are not always called immediately when something is found. If you are not comfortable picking up your own MRI CD and/or report, call your ordering doctor within a very few days and be persistent about getting an answer ...... it's your body and you have the right to know!
Clarice
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..... no, you are not always called immediately when something is found.
That is just downright appalling! :o
I don't know anyone who wasn't called a day or two after their MRI when there was a problem. Acoustic Neuroma or something else.
This doc wouldn't have lasted as week as my doc, unless he had a VERY good reason for not calling.
Jan
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..... no, you are not always called immediately when something is found.
That is just downright appalling! :o
I don't know anyone who wasn't called a day or two after their MRI when there was a problem. Acoustic Neuroma or something else.
/quote]
Umm, me. I got lost in the cracks when I had my MRI and was being followed by a civilian ENT in TX. As usual, I was ignoring my symptoms, going along my merry way, had not heard from the doc in over a month. Actually had to call for my own FU appt., assuming all was well.
Oops they (staff and MRI place) forgot to mention the abnormal MRI. He slapped it up there, looking at it for the first time. Can you imagine?
I was getting ready for a trip to KS the next day, husband was stationed in WA (couldn't reach him allllll day), continued along my merry way :'( and went to KS with this booger smashed against the brainstem. Yea, pretty unbelievable.
Oh yea, hubby returned call at 10 pm my time. He had forgotten his cell phone at home, and decided to do groceries after work....
You just never know!
Oh yea, back on track-Good luck on your MRI on Thurs, Doodlette! :)
And SYBIL, I'm glad you don't have an AN, but I hope they figure out what is wrong with you. That is no fun, that there is no diagnoses.Hang in there ;)
Maureen
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sorry about all that purple
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Doodlette .....
The hypersensitivity to sounds is called hyperacusis (see http://en.wikipedia.org/wiki/Hyperacusis). Not everyone has it along with their hearing loss. Unfortunately, I do. Even chip bags being opened send me into orbit! I have to really watch myself not to jerk at these noises when out in public ...... but it really jars me!
Re: MRI results. Like Jan, I always wait for my own copy of the CD after the MRI and I go back the next day (or whenever they say it will be ready) for a copy of the written report. The test results and report belong to you, not the doctor. However, you may not want to do this if you will be frightened by what you see or read. Sometimes a doctor can give you a more hopeful or reassuring way of telling you the results ..... that's your call. Jan, medium to large ANs show up like a sore thumb, but I'm not sure how well you can tell a small AN ..... there are also many blips and blobs that are simply innocent, non-essential/normal findings that show on an MRI with contrast. I doubt if the techs will let you look at the screen, which is in a different room than you are for the test.
Good luck on Thursday and let us know what you find out.
Thoughts and prayers.
Clarice
Clarice, I want to HUG you right now!!! I thought I was just kind of a bad person or something - no one has taken me seriously about it, although one of my doctors wanted to give me antipsychotic medication for it.
I lived in an apartment for a few years and at first it was fine, but gradually, I ended up with all neighbors that liked to blast music at 3 am. I complained to the landlord again and again, but they blew me off and told me if I didn't like it I should move. I did, and I'm a lot happier and calmer now. It's made a tremendous difference in my quality of life.
But I genuinely didn't know there was a name for it, and that others had this. It's so odd the kinds of things that can just start the torment going. I can barely go to wal mart because it's just too noisy. The regular grocery store is normally ok.
If I can blame it on my hearing loss, LOL. Maybe my family won't think I'm such a complainer. I tried ear plugs and expensive noise-cancelling headphones and everything. I just needed a quiet environment.
Thank you!
Dood
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Thanks so much everyone. I didn't realize there were new replies to the thread...I must have accidentally clicked stop sending me notices. LOL.
I've got myself kind of convinced that even if I do have this, it's going to be okay, as long as I don't have to have brain surgery. I am so scared of surgery, and in the last three years, I've basically had a surgery a year. Nothing major, all outpatient.
The idea of brain surgery makes me dizzy. I know I'm really jumping the gun, but the more I read, the more I scare myself. All of these occasional and vague symptoms...are they something or nothing?
I'm definitely going to ask them if I could have a CD or come back the next day or whatever. Also send a copy to my regular doctor - they always call me when there's any kind of abnormal test. I'm anxious to get this over with.
All of this because I asked my GP to check my ear for wax.
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Well Doodle, that 'wax check' may turn out to be a blessing in disguise! Tomorrow's the big day. I'll keep my fingers crossed for you!
So, I picked up my MRI yesterday and looked it over. At the risk of sounding even more crazy, I think I see something. Actually, when my kids got home from practice (they're 15 and 16), they saw something too! There does seem to be something different, but we are not doctors. Could the radiologist and my ENT have both missed something that seems so clear? If it were just some kind of a cyst or something, wouldn't they have remarked about it in the report?
Anyway, if I can figure out how to get the images uploaded, I will try and post so I can get some opinions.
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Well, I just called the MRI place, and good news:
1. I just have to tell them beforehand and I can take a CD home with me.
2. They *are* using the contrast.
So I may "kinda" know tomorrow, given that I've looked at a lot of MRI pics online. :::crossing my fingers:::::
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My only question: this MRI place is about 20 minutes from home. There's a Wal Mart nearby. My mom will be in the car.
Would I be totally crazy to run into Wal Mart to their picture thing and view the CD there, then print one out if I need to? She may forbid it. LOL.
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Dood -
you're starting to scare me a little here. Take a break from the whole idea of an acoustic neuroma and chill a little. Wait for your results before you get yourself too nervous.
CDs of MRIs can be viewed at home on the CD-ROM of your computer. No stop at Walmart necessary.
Jan
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As I said before, be careful about doing your own interpreting of the MRI. Wait until you get home and view it in the privacy of your own home. There will be many blips and blobs on it that are totally meaningless (and normal) unless you know what you are looking for. If you have a large AN, it will vividly stand out as a large white blob on one side only. ..... but, be very, very careful not to jump to conclusions until you go over the results with your doctor.
As Jan said, try to relax a little bit about all of this or it will backfire on you ...... meaning you will be unable to separate "real" symptoms from stress/pressure induced ones. In other words, do not borrow trouble by overanalyzing the MRI.
Best thoughts and prayers for tomorrow.
Clarice
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I think I uploaded a few of my MRI images if anyone wants to take a look. Started a new thread - My MRI images. Hope it works!
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After seeing the "marble" on Sybil's MRI, I'm thinking maybe I'm better off not looking and waiting for the report. There's no telling what I might see and think is something bad.
So how long does it take for the radiologist to issue his report and get it to the doctor?
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It varies ..... from 24 to 48 hours, or longer. Ask when you go for the MRI when the report will be ready.
Good luck. Clarice
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Well I had the MRI today and opted not to take home a CD. I'm going back tomorrow for the CD with the radiologist's report.
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Dood -
sounds like the best plan of action.
Leave the diagnosing up to the doctors.
Good luck,
Jan
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Hey everyone! Good news - no tumor. I took the report and CD over to my mom's house because I was scared to open it alone. And there it was in black and white: unremarkable. Woot!
You guys have been so great to me, and I so appreciate it. I'm sorry you have to go through this crap, but I'm amazed by the kindness and humor around here. I'll keep you all in my prayers.
Dood
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Dood ~
Alright! I'm so glad to learn that the MRI showed no tumor. This should be cause for at least a small celebration. I'm pleased that we were able to offer you some support as you went through this ordeal. I just hope the real cause for your symptoms can be located and addressed. Have a super weekend! :)
Jim
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Dood .....
So glad it is not an AN, but I do hope you can find an answer to your symptoms soon. Hopefully just knowing it is not an AN will make you feel better. Check back in with us and let us know how you are doing.
Best thoughts and prayers for relief from your symptoms.
Clarice
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Thanks, you guys.
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Now aren't you glad you didn't race to Walmart?
Congrats, Dood ;D
Glad your MRI was "clean"
Jan
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Yes congrats on your clean MRI!
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Now aren't you glad you didn't race to Walmart?
Congrats, Dood ;D
Glad your MRI was "clean"
Jan
LOL, yeah. You did a good job of reeling me back from the brink, and I thank you for that.
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Yea DOOD!
Hope you find out what all these symptoms mean, but meanwhile, so glad you don't have a booger on the brain :)
Maureen