ANA Discussion Forum
General Category => Inquiries => Topic started by: Keeping Up on November 23, 2008, 09:29:59 pm
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Told myself I wouldn't post - but well, one post every few days won't hurt very much. I probably don't have an AN.
I was referred to an ENT after a hearing test during a routine annual showed a mild hearing loss in my left ear. At the time, I hadn't noticed it. Within a week or so, I noticed the fullness and the tinnitus, so started googling. In a way that was good as after the battery of test (including a more in-depth audiogram) showed mild sensoneural hearing loss (i.e. inner ear - not that any of you need to be told that!), no ear wax (sorry - was afraid I barked up a tree, and the specialist would just tell me to clean out my ears!) but no other type AN markers as is common (some head shaking, balance - walk a straight line, follow my finer, tilt me close to upside down etc).
The doctor said (most likely to least likely)
- early onset hearing loss
- Menieres
- acoustic neuroma (thus, my presence here - I have not been diagnosed, in queue for a MRI - but am Canadian so that will take 4-6 weeks - in Toronto so perhaps better than some other places)
I was glad I had googled away as it didn't flip me out to hear the concept, even if far fetched, that I perhaps just might have a benign brain tumour.
So ... my questions
1. MRI - what is a MRI with contrast. Seen several of you mention that - the contrast part. The idea of a big scary machine is a bit over the top - just like to keep my ducks in a row. Does everyone who is going for a AN scan get 'contrast'ed?
2. Anyone read a study by Chaimoff - something about hearing loss and incidence of AN. There is a quote in the excerpt that has me curious. (I know I can't change whatever might be in my future, but a bit of warning is awesome)
Results: Forty patients were admitted with sensorineural SHL, of whom 19 (47.5%) had a CPA tumor. The latter group showed a significantly lower mean age and better results for the low frequencies on pure tone audiometry, as well as better brainstem-evoked response test results than the patients with negative imaging findings. There was also a significant difference between the groups for both the affected and unaffected ears on the discrimination test.
[How does one interpret that? Does anyone have full access to the study - Sudden hearing loss as a presenting symptom of acoustic neuroma, published in 1999. ]
3. Time off work IF surgery is required - just thinking about stuff - how long off work would one expect to be out? I work in the big bad world of finance, equity markets no less (alas, you wonder why I didn't know i had any hearing issues/tinnitus at all through the month of Sept/Oct - ha ha! ) so work is a bit intense, with very long hours.
4. I was referred to a neuro-octologist who obviously also does surgery (as one of his peers barged into the examine room asking if he was doing surgery that day). Are ANs operated on by whole other team, or could this all remain within this team. It was at Toronto General - and part of the 'Balance Clinic' which is right beside the bone clinic. For a girl who hates hospitals (if my husband had been on board, I would have had my babes at home - but instead, had them quick and was home for dinner), it is quite eye opening to spend any time at a hospital, with the elderly as the primary patient. I don't do sick well.
5. My only odd thing I have noticed (does everyone look for symptoms) is a numbness in my left arm - not drastic, just a general 'sleepy' feeling. Anyone else - or is just in my head (highly possible!) or just completely unrelated. I forgot to mention it ... mainly as all googling inferred no such numbness is common - silly me.
A bit about me - I am 37 years old (and two weeks), married with four little ones - 6, 4, 2 and 1. I lead an incredibly busy life balancing it all - work, kids, marriage, nanny, house etc. I am trying to just accept that I can't figure out what will actually result from the MRI (likely nothing - is the 6% accurate - i.e. 6% of people who have MRIs for ANs actually have ANs - those are good odds.)
I will say - I have been reading posts for the past couple of days - and you all seem like a great group - helpful, upbeat (even when down a bit), well informed, and such different backgrounds (age especially - mean that very positively). I have loved reading a few of the blogs (I am a blogger too - but just not about this obviously) - I find them very useful. Keep it up. Hope I will not be joining you but you all serve your purpose very well.
PS - had a dream last night that the ENT said I didn't have a AN - which I thought was just awesome - until he said 'unfortunately' - promising myself now to not try and figure out what the 'unfortunate' might mean!
Waiting sucks.
Thanks in advance
Ann
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Hi Ann,
That is quite a nice introduction you have written; I hope you don't have an AN, but welcome to the forum in any event.
The MRI with contrast means they slide you in the tube for about 20 minutes, then slide you out, inject a contrast dye into your arm, and slide you in again. Sort of like basting a turkey. The contrast causes an AN, if there is one, to light up like a light bulb on the images, making positive identification much easier.
Although there is probably some pattern to hearing loss with an AN, I doubt anyone would rely on that for a diagnosis. ANs show up all sorts of ways, and behave all sorts of ways, so everyone gets their own special custom made version of an AN - if they get one.
You may or may not have an AN, and if you do, you may or may not need surgery, so speculating on what might happen is a little premature. A short answer might be 8 weeks off work for surgery, maybe less, but possibly more. Most surgeries involve a neurosurgeon and a neurotologist. Lots of people go through it, and it works out fine in the end.
So, wait for your MRI. If it does turn out you have an AN, the practice at being patient will help, since patience turns out to be a major requirement for dealing with them. Meanwhile, have a great Thanksgiving with your family, and don't work so hard, you seem to be doing enough for three people. ;)
Steve
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Hi Ann,
Welcome to the forum. I agree with Steve and hope you do not have AN. I travel to the Toronto General to see Dr Rutka. I live just down the QEW in Hamilton. I have four sons who are in there late teens and early twenties. Unfortunately I'm almost twelve years old than you (two months today). I too work in the financial industry, for a small Credit Union in the downtown core. It is a very busy branch and noisy, so I understand what you mean by long hours and intense work. People have no idea how stressful finances are, especially in this economy.
Sounds like you have done some research on AN. I actually have a facial neuroma. Mine was misdiagnose for a few years. I'm off at the moment on LTD because of severe, debilitating headaches and facial pain. Some of us are lucky, have surgery, or treatment and little or no problems. Others like myself are not so lucky. I know first hand that the Doctors at the Toronto General are wonderful, caring and very skilled.
Take care,
Anne Marie
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Hi, Ann:
I'll expound a little on what Steve said. An MRI with contrast involves injecting a dye -- typically gadolineum -- into a vein in your arm. The dye makes an AN show as a white mass against a black background -- hence, the "contrast" part of the description. Gadolineum typically causes no ill effects if you drink plenty of water after the MRI is over, and it is excreted by the kidneys over the course of 24 hours.
If your hearing loss is only in the lower frequencies, then Meniere's is a possibility. If, on the other hand, you have high-frequency hearing loss only, then Meniere's is far less likely.
Here's hoping you don't have an AN! Best wishes for a positive outcome to your MRI.
Sincerely,
Tumbleweed
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Hi, Ann:
Welcome - and no need to apologize for posting. While an acoustic neuroma is relatively rare (on an annual basis, approximately 1 in 100,0000 people are diagnosed with an acoustic neuroma in the U.S.) and while we certainly hope you don't have one, your concerns and questions are perfectly reasonable, under the circumstances.
The MRI has been fairly thoroughly explained, as has the gadolinium injection. However, I'll add that a head-only MRI is somewhat confining and if you suffer even mild claustrophobia, you'll want to consider asking your doctor to prescribe a mild sedative for you to take just prior to the MRI scan to help you get through it without any incident (such as you screaming "LET ME OUT OF HERE RIGHT NOW!"). By the way, although I'm being somewhat facetious, you'll be in constant communication with the operator of the MRI (which is quite noisy at times) and the MRI technician will let you out anytime you ask... no screaming necessary, not that you ever would, of course. :)
Recuperation from AN surgery can take some time but everyone heals at a different pace and frankly, for all the similarities AN patients seem to share, there is no definite timeline for recovery. The alternative to surgery is radiation treatment, which is non-invasive and has a faster recovery time but still carries it's own set of risks. Observation, which is usually termed 'watch-and-wait' may be the best course for you, should your MRI actually show an acoustic neuroma. 'Watch-and-wait' avoids surgery or radiation but entails annual or even semi-annual MRI scans. This is the only credible way for your doctor to observe whether the AN is growing, and, if so, how much. The reality is that not everyone has that kind of patience. Often, once they know they have this benign tumor in their head, they want it out (or irradiated) as soon as possible. That is yet another decision to be made, should the MRI actually show an acoustic neuroma present.
However, until you undergo the MRI and have the results and a (possible) diagnosis, this is all speculative. My hope is that your upcoming MRI will not show any tumors, of any kind. :)
Jim
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Thanks everyone ...
The public medical care system in Canada was looking down on me - for whatever reason, luck was on my side and my 4-6 week wait for a MRI, got reduced to 8 days - and I am off tomorrow night at 11:15pm. (No turkey day here so it works well).
I did speak to the MRI clinic and asked if the contrast was ordered - but it wasn't. So, I have left a message at the ENT office (Dr. Bailie - Dr. Rutka's office mate) to make sure that made sense. I guess it just might be correct based on a few other posts here. Is the contrast (can't spell it - the 'g' stuff) expensive - I would gander that might be why it is excluded from the Cdn repetoire of 'gold standard'
At least a MRI time is one less thing to wait for in this whole process.
More questions -
So ... how long until the radiologist would give the results to my doctor - might I know before the weekend? Probably early next week I imagine.
And, while most of you didn't walk this path - if it isn't a AN (which I obviously hope it isn't), do they just let a 37 year old march along with mild hearing loss with nothing else - is that my answer? I have no symptoms other than hearing loss and the ring. (The naussea and the spins haven't happened in weeks. I am even reading on the subway again.)
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Hello Ann and welcome
I am a fellow Canadian too, I live in Kingston, Ontario. I also found that after all the MRI wait times are not as long as people think they are. As far as the radiologist report goes, it may take a week to get the results in. Of course by now most of us ANers know how to read our own MRIs, so we request our CDs and check them ourselves.
Regarding the issue of contrast, it is better to have it for the diagnostic scan. My scans were always ordered with contrast, so I don't think that cost is an issue.
However, my understanding is that the docs at the Toronto Western/General hospitals do not routinely order scans with contrast. Actually the only MRI I had without contrast was at the Toronto Western. My guess it that Rutka is very experienced on that stuff, so he knows what to look for, even without contrast. I know that Trish (another forumite from Toronto) had all her scans without contrast.
I can understand how all this can be very overwhelming, but you will have at least your answer soon. My guess is that hearing loss at this age is not normal, so if it is not an AN (which of course I wish it is not), they will have to look for other explanations. Rutka is very experienced, so you are in good hands. It is better to do the MRI to "rule out an AN" , rather than go misdiagnosed for years, as has happened to so many people here.
Feel free to ask a lot of questions, we are here to offer support ;)
Take care,
Marianna
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Hi Ann and welcome.
As you can see, there are several others from Canada in our forum. I hope you don't have an AN -- although if you do you are in good company. The good thing about an AN is that they are benign 99% of the time and completely treatable. Please don't apologize for posting -- that is why we are here, to support each other. Good luck with your MRI -- I look forward to hearing the results.
Best wishes,
Wendy
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Hi Ann,
In my situation because I have a facial neuroma, Dr Rutka was more interested in the CT scan that was done without contrast when I first started to see him. I agree with Marianna Dr Rutka is very experienced.
The best of luck to you. Hang in there, bang-bang, clang-clang goes the machine.
Anne Marie
P.S. Did you receive a lot of snow today?
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Thanks everyone again
Funny how you just go from one waiting stage to the next!
The MRI was fine - the hospital was tremendously efficient. The machine does make a lot of noise. Anyone ever try to figure why it has so many different noises? I decided it sounded like a firm alarm on acid. I didn't get a CD - didn't bother to ask (not sure if they would or wouldn't have provided)
I guess I will find out next week.
Enjoying today off (even at 8am) - taking my eldest to school this morning so a great day all round.
Will be back next week to give you the verdict. I do hope I don't join your friendly little club, but you have all been so helpful and positive.
Thanks again.
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Hello Ann,
just a piece of advice: Always keep track of your reports and your MRI scans. I didn't keep the CD from my initial scan (gave it to the neurosurgeon that I initially consulted with). BIG mistake. It turned out that there were conflicting opinions about the size, so I had to go back and chase to get my CD back. Also, always request copies of your reports (from the radiologist, but also from your consultations with the specialists - hopefully you won't need any!). It is amazing how little they will tell you, versus how much you will see written in the reports. I used to trust the doctors, and I didn't ask too many questions at the beginning. Now I have learned that I really need to take control, and make sure I keep on top of things.
A little tip regarding CDs from the Toronto Health Network hospitals. The records are kept at the Toronto General, so this is where you would need to go to request a CD.
Hopefully your MRI will show a big NOTHING and you won't have to worry about all this again.
Take care,
Marianna
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Hi Ann
Welcome, glad you found us. Hope you don't need us.
I am in Toronto too and was diagnosed in January this year by Dr. Rutka. I too only had only some hearing loss and ringing (both of which i had become aware over a few years).-- No other symptoms to speak of!
When i first meet Rutka, he said... you should have an MRI to "rule out" an AN. I was like sure... let's rule whatever that is out! I didn't wait long for the MRI (NO contrast) a few weeks -- in part due to the fact that i had to wait to determine that i was not pregnant, which i wasn't (you have 4 kids!?! wow...fun!). I think it was about 3 weeks after the MRI that my manager asked me what the results were...I said, i don't know... no one had called me. He said, oh, that's good, no news is good news. I followed up that day and had an appt to see Rutka. To my great surprise and horror, I did have a tumor (AN)! And it was medium to large, pressing on my brainstem, and i should have it treated sooner rather than later (within 6 months).
Those were tough times. But that was a long time ago already. I had surgery in June and am doing great now, except for my poor face, which i am hoping will recover (some very small signs already, but i know it can take a long time).
I agree with MK (Hi Marianna!) that you should get the CD. It's free!!!!!!!! I took it home and showed my hubbie. He was in shock and said, that can't be it, it's huge! great. Anyway, it is good to keep record of these things.
I hope it turns out to be nothing and you don't have to go through this, but we are here if you need us.
Feel free to PM me.
Trish
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Hello Ann, how are you today? - I am glad you found this site - the people here are so friendly, knowledgeable and supportive!
I, too, hope you don't have to join this club; however, i will tell you that after 10+ years of diminishing hearing loss, and my sister diagnosed 6 months ago with an AN, i decided i just wanted to know what was going on in my head! -- Yes, i have an AN as well, though smaller than my sister's.
But, through it all, i am grateful for the information, and glad the ENT (at a major medical center) didn't have a problem ordering the MRI with contrast.
I agree with MK about getting copies of all reports and CDs. Prior to this year, i had 2 hearing tests over the last 10 years, but didn't keep a copy of the records. The doctor is retired or moved and so now i can only move forward from here.
Good luck with your next doctor appointment!
My prayer is that you do not have an AN.
Sincerely, Sue
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Hello everyone
I am a fast typer and always have too much on my mind.
I will ask for records. I actually had a hearing loss incident about 15 years ago. Woke up one morning with radio static in one ear - very very odd. I was sent off to audiologists very quickly - but no cause was ever determined. Probably, within 10 days, it was gone. That incident is likely not at all related to this incident - but it makes you think. I can't even remember which ear I had the hearing loss. I should keep better medical records.
So, doctor's office called today to schedule a follow-up appointment for Dec. 11th. I asked if I should bring my husband. I don't want to bring him, and waste his time, if it is just good news - clean MRI and that the hearing loss will be monitored with appropriately intervalled hearing tests. The receptionist said I should book an appointment that is good for my husband as the doctor will want to discuss the results of the MRI and options.
Of course, my husband will come. I don't want bad news all on my own. I also read somewhere amongst your wise posts to bring someone else so that the message is clear re options/names etc.
But, now I have just assumed the worse and I am panic(ing) (no clue how to spell that!) I have a tension headache which is abnormal for me. I do you calm yourself down - and good techniques. I will drive myself, my husband and my workmates nuts over the next two weeks if I don't come up with a strategy. (Oh, should add ... all of you too!)
Why don't they give the basics over the phone??? I know the receptionist mightn't even know but I have now just guessed the worse.
Good news - as always, I think the Cdn medical system is working awesome. It appears I am with good doctors and getting through appointments very very quickly - less than a month from request, to MRI to follow-up.
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Hi Ann,
Your initial post reminded me very much of my first post here - I found this site before my MRI and ultimate diagnosis, and was, therefore, relatively calm when I was told about my AN. My ENT was kind enough to call me just a couple of days after the MRI and tell me the results over the phone...Sorry that you will now have to wait for 2 weeks to get your results - there is, of course, no way to know what your doctor will say, but we here all certainly hope it is not an AN. In the meantime, feel free to "drive us nuts" all you want - that is why we're all here! You can now, hope for the best and be prepared, at least somewhat, for what the results may be. Try to think positively as much as possible! I know the waiting is very tough, though.
Take care and keep us posted - we'll all be pulling for you,
Cindy
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The receptionist said I should book an appointment that is good for my husband as the doctor will want to discuss the results of the MRI and options.
It is probably not a great idea to read between the lines, but since you already have, I think there is a hint there. On the one hand, if you need to discuss options, that would suggest there is something there to discuss options about. On the other hand, if you have options, and you can discuss them at your convenience, that would suggest it is small and doesn't require immediate action.
Since there are generally three options, perhaps you can play rock, paper, scissors for a couple of weeks until the appointment. :)
Steve
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Since there are generally three options, perhaps you can play rock, paper, scissors for a couple of weeks until the appointment. :)
That made me laugh. I have decided to stop fretting - see if I can do it. IF (and big big big IF) it is an AN, very few need to be dealt with any speed, so why start fretting now. Regardless of the discussion on the 11th, nothing is going to change for a few months.
I love x-mas, I love my family and kiddos, and fretting is just going to ruin it all (for EVERYONE - especially my poor husband).
As of this moment, I am stopping fretting - and will promise myself only a tiny, weeny bit of internetting each day (well, about the topic!)
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Am I allowed to have more questions ... these are probably relatively generic to the folks with any sort of ear issue (which I definitely have ... an AN is hopefully not the cause).
Appointment is a week away to determine what all this is about (or at least, what it isn't about!)
Nausea - what causes the nausea with inner ear issues. Anyone have any good articles/references? I was originally somewhat nauseated when this all started a month ago - maybe once a day, especially on the subway. It was akin to morning sickness feeling (the girls will know what this is like). Thankfully, I have only had one bout of the spins (i.e. like having drunk way too much alcohol at university). However, I now have morning sickness bouts several times a day - I even was woken up last night in the middle of the night. It is not over-whelming, just uncomfortable. What in the inner ear (or perhaps the AN types are just related to their ANs - I imagine mine is related to inner ear) creates the nausea feeling. I had a two week respite of no nausea and no spins but it is now back, and worse. I eat regardless, because I remember from preggers days that even if you didn't feel like eating, it was by far better to maintain your blood sugar. (Yikes, a preggers person with nausea and low blood sugar and the grumps ain't a pretty sight!) FYI ... I am so not pregnant.
Ear stuffiness - again, I am now in the frame of mind that I don't have an AN - they are just too unusual - I just have inner ear issues. What causes that inner ear stuffiness? It is so odd to be walking about and have a plugged up ear - so you can litterally hear yourself in surround sound humming x-mas carols or breathing!
Audiograms - trying to interpret audiograms - how can you tell on your audiogram if you have low frequency versus high frequency hearing loss? My audiogram (again very very mild hearing loss) was normal at one end, but tailed off towards the right side? Is that chart that is low versus high frequency? Just wondering if I can learn a few more buzz words before the appointment next week.
And, finally - perhaps instead of lurking about here, is there a hearing issues board. Probably these more generic questions deserve to be elsewhere. Now that I have somewhat (far from completely) decided that an AN is not likely just due to the odds/frequency, I am utterly intrigued (not obsessed) with the physiological aspect of mild hearing loss. It is somewhat cool at this level (because it is so mild) - why does the brain react this way. I am 37 years old - so age is not a likely cause.
Still lurking about for another week.
Ann