ANA Discussion Forum
General Category => AN Issues => Topic started by: dontwant2believe on November 29, 2018, 03:19:58 am
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ive been struggling with my right ear since atleast 2015 with morse code type beeping tinnitus at 1542hz frequency. most recently about late 2017 through 2018 there has been a significant amount of ear pain that changes depending on if i tug my earlobe or move jaw.
also for example if i lay on my right ear on the pillow it feels like theres something inside my ear and that feeling changes depending on jaw movement
now the most worrysome symptom on top of all of this is just the past week i woke up one day completely dizzy as if I was seasick, rocking back and forth on a boat. This has not stopped since then. I am persistently 100% dizzy all day long and nauseous . I feel seasick all day long.
I had a CT scan, and an MRI (WITHOUT CONTRAST) sometime in 2016. Both came back normal.
How likely is these issues related to having AN?
my biggest concern is the MRI and cat scan I had in 2016 was done WITHOUT contrast so it is not fully conclusive.
Why would I have unilaterial tinnitus, ear pain, constant vertigo/dizziness, extreme fatigue?
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Sorry to hear about your troubles. The initial MRI of my whole head showed nothing as well, but then my doc ordered an MRI of of IAC (internal auditory canal) - a much more detailed look at areas specifically around the ears, and boom, there it was. Get it with and without contrast, assuming you are not allergic to gadolinium. Maybe that more detailed MRI should be your next step. Best of luck to you.
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Hello and welcome,
All of us here feel your pain. Before you assume the worst, take golfguy’s excellent advice and get another MRI with contrast. The fact that moving your jaw causes pain could indicate TMJ which is also associated with tinnitus. Also, dizziness might be due to something as simple as a misplaced calcium crystal. In 2015, I had the worst vertigo attack ever. I could not even move the first day. After 3 weeks of constant dizziness I went to an ENT who noticed I had nystagmus ( jerky eye movement) on the right side and correctly diagnosed me with a misplaced otoconia. They performed an Eppley maneuver to reposition the crystal and I was instantanly cured. I was thoroughly amazed. The thing is, I likely had the AN at that time, but didn’t know it. The AN did not cause the dizziness I experienced 3 years ago, although it likely exacerbated the problem. No use in worrying about an AN when that may not be the problem. Your symptoms could be due to something much less complex and easier to fix.
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Sorry to hear about your troubles. The initial MRI of my whole head showed nothing as well, but then my doc ordered an MRI of of IAC (internal auditory canal) - a much more detailed look at areas specifically around the ears, and boom, there it was. Get it with and without contrast, assuming you are not allergic to gadolinium. Maybe that more detailed MRI should be your next step. Best of luck to you.
Was your initial MRI with contrast or not?
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The whole head one was with contrast as well, yes.
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The whole head one was with contrast as well, yes.
so before I go in for my next mri I should directly specify MRI CONTRAST IAC?
i need to do the doctors job for them and tell them what to do?
they cant seem to figure out what to do on their own
I just saw my GP today and they said "youve seen 4 ent's, a neurologist, youve had MRI and cat scan (without contrast) and we dont know what to do anymore, you should see a psychologist"
my GP told me that she would book me a psychologist appointment....
like...as If someone can talk me out of being dizzy, hearing tinnitus, having ear pain
i dont understand what this procedure is??
I keep telling them I need MRI contrast especially on IAC but they act like its not that big of a deal and "theres nothing more we can do"
I had to explain to my GP that without contrast the MRI can miss small tumors...
Then I did my bloodwork, waiting for results.
And got prescribed more serc 16mg
that being said I do have an MRI with contrast for Dec 27, but I'm not sure if its specified with IAC?
What should I do next?
I am so dizzy that I cannot drive my car it feels like i've drank 6 beers..
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My personal belief is to get the diagnostic MRI with gadolinium contrast agent. This assumes you don't have any kidney problem as you need to quickly clear the stuff out of your system.
Subsequent MRI. which are looking at growth, should be done without gadolinium contrast agent. You can still determine growth without contrast. I would also do at least 5 MRIs, 6 months apart (2 years in total) to determine growth. These should be done on the same MRI machine and preferably analysed by the same radiologist. This method also reduced other errors such as where the particular MRI happens to slice the tumor.
Only intervene if there is distinct growth or some other reason.
These are my personal opinions.
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I'm still very offended my GP would refer me to a psychiatrist.
Has anyone experienced anything like that before?
Because the doctor is too bad at their job or unable to diagnose and do proper procedures, I'm mentally ill apparently.
So frustrating...baffling..
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If your future specialists have previous AN / Vestibular Schwannoma experience, it may help.
The MRI with contrast was the answer for me, a CT did not show much but WITH contrast, even i could see that something was there.
Understanding the root cause is a HUGE milestone -- but the life impacts remain. Hang in there, dontwant2believe. Whatever the root cause is, know you have a community behind you, here.
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any advice on what I should do? ive been waiting since 2013 to be properly diagnosed and rule out AN but all doctors so far are clueless and think MRI without contrast is good enough despite my crazy symptoms
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Personally, I cannot emphasize enough the importance of getting the special MRI, with contrast, of the IACs. Without that more specialized MRI, mine never would have been found. If you just had a general MRI of the whole head, that is not good enough. When I had my general head MRI, the technician said he was even going to take some "slices" through the IAC and it still did not show up on that MRI. So if the GP won't listen, skip the GP and go right to an ENT doctor who cares to give more attention to the IAC.
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ok thank you so I have an MRI scheduled for Dec 27 what exactly should I say to my GP / ENT to be forwarded to the MRI team?
I need to make absolutely sure before I go in on Dec 27 that the MRI is for Contrast of the IAC? is that it?
and also as ive said my GP has already started bringing up psychiatrist so my GP already thinks im insane or its some mental problem which is really condescending. How can I get them to get me to proper experienced care instead of this runaround I'm getting?
this is Canada by the way
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My AN symptoms, i.e., hearing loss, lightheadedness and double vision started around 2000 and developed over a five-year period before I was diagnosed and treated in 2005.
But long before the AN I was afflicted with an inner ear infection in 1983 that resembled what you're describing. I remember it came on slowly for what seemed like weeks where my vision would slowly roll up and repeat like the slow flickering of an out-of-adjustment horizontal hold on an old television. Then, one day I woke up and the entire room was spinning in a full-blown case of vertigo. It was so bad I actually vomited. It stayed like that for over a week. I had to crawl around it was so bad. I got myself to an emergency room and the doctor told me I had a case of viral vestibulitis. He gave me a dose of Meclazine and sent me on my way. Gradually it eased-up and stopped as viruses always have to run their course and go away in their own time.
Also, a girl I know lost her hearing in one ear from an inner ear infection. The point being there are other conditions that can mimick the symptoms of an AN. Also, you spoke of having vertigo. I had a huge tumor. With everything I went through with the AN I never once experienced vertigo. As bad as my equilibrium was and with lightheadedness and double vision, it was nothing like I what experienced with that inner ear infection back in '83—the spins.
And yes, you should have another scan with contrast to be sure.
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Now ive found out the radiologist has denied the request for Contrast so i am getting another MRI without contrast and theres nothing i can do about it
my ENT requested contrast multiple times and the radiologist apparently declined it NOW WHAT??????????
Why am i having so much trouble getting a doctor taking this seriously? Does anyone even know what to look for in cases like these? do doctors even know what acoustic neuroma is?
Why would they not give me contrast? whats the reason?
Ive been a month calling back and forth trying to get confirmed with contrast and then I find out the radiologist just declined it...
Why would they do this to me?
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I would not think a radiologist has any veto power over a doctor. They just preform the tests that are ordered by the doctor. There would be no request for the contrast, the doctor writes an order and the radiologist preforms the test. Maybe there is more to the story or just plain confusion between them. I’m inclined to think that this issue is related to the doctor more than the radiologist.
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the ENT's secretary said she faxed the report With contrast twice now.
then I was talking to the manager of the MRI department at the hospital because i kept calling to check on the status of my appointment saying 'no contrast'
the MRI department manager told me the radiologist must have declined to do contrast and that my ENT will need to call him.
edit: just found out my doctor thinks I have psychosis which is why no one will do any proper diagnostic with contrast. cool. ;D
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My mri with contrast is in 2 days but with further thinking and weighing the pros and cons I have come to the conclusion that maybe the contrast is too much of a risk and not worth doing.
There have been countless studies and research since 2014 showing that gadolinium contrast dye doesn't actually fully leave the body after injection and there are chemical metals that remain in your brain and tissues, and doctors are unsure how bad this is for health as they need more resaerch. This is why radiologists are so reluctant to give contrast nowadays because they do not want to be liable for a contrast injection related injury or Contrast Retention
so with this in mind, I have also know I do not have a Large tumor because it would of shown up on the inital CT scan and MRI Without contrast.
So that leaves in the very slim chance that i do have AN, it is very small and will only show up with contrast dye,
Which I have also recognized getting surgery to remove it 99.9% chance you will lose hearing in that ear (Is this correct or are the odds better?)
And thus the doctors will simply just tell me to do nothing about it and wait.
So AN or not I don't think would change anything because they would simply not do any surgery or anything about it and i would be Wait and watch status
Is it reasonable for me to weigh the pros and cons and come to the conclusion that not getting the Contrast injection because of the unknown risks of Contrast Retention is a viable choice?
https://www.itnonline.com/article/debate-over-gadolinium-mri-contrast-toxicity
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I have an AN. I was initially diagnosed years ago because my ENT recognized my symptoms. I was waking at night with vertigo & I experienced nystagmus (rapid eye movements). I also had tinnitus but hadn’t been bothered by it. It took seven months for the vertigo to resolve. For years I was Wait & Watch as I had no growth with only minor hearing loss. Very recently I awoke with the worst migraine & once again had vertigo. It’s almost a month now that I have vertigo. Last week an MRI confirmed my AN had grown.
All of the MRI’s I’ve had of my brain for the purpose of assessing my AN have been with contrast. My understanding is that, especially with smaller AN’s they are easier to spot after the administration of contrast. An MRI with contrast will make it possible to spot an AN as small as 2mm.
I feel I’m personally benefitting now from being able to consider treatment options because I had multiple MRI’s with contrast over the years. Ultimately you need to make medical decisions which you think are best for you. I wish you the best of luck.
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I asked for my second follow-up MRI (6 months after diagnosis) without contrast, and the surgeons let me know that was the wrong decision. Several of the surgeons I consulted with seemed less-than-pleased when reviewing the scans. Especially in trying to find it for the first time, contrast sounds critical. What if an AN cannot be seen without contrast, but it could have been seen with contrast? Who wants to have that false result and the impacts that could occur for years by not finding it when they could have? Unless a person knows they are allergic to the contrast agent, it seems really important to have contrast.
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In my own case, all I can say is that I have had many many MRIs due to NF2. This has been since 2001. I have had no issues. Blood work is done before the MRI for most people to make sure you have good kidney function. I have not met anyone with problems but an occ post here saying they heard of someone who did. Has to be your choice. Cheryl R