Aa
Acoustic neuroma: Can the ABR be wrong?
I have right-sided high frequency hearing loss, a sense of fullness and pain in the right ear, right-sided tinnitus, and minor dizzy spells. My doctor sent me for an ABR, which was normal, but I have read on the internet that it can be up to 40% inaccurate with small acoustic neuromas. If I do have an acoustic neuroma, the smaller it is upon discovery, the greater the chance I will retain my hearing. I want to have an MRI, which is almost 100% accurate in diagnosing these small tumors. The doctor doesn't want to send me, saying the insurance may not pay for the much more expensive MRI since the ABR is negative. Can I insist, or should I ditch this doctor and get a second opinion? I am a registered nurse and the worry is greatly affecting my concentration at work.
So, over the past few days, I am getting stronger. Lost my taste buds though. Everything tastes bland. Hint of flavor like you know what you are eating, just not tasting good. Realized that a few days ago, I was adding salt and it wasn't changing the flavor.
Can't taste sugar. Can't taste sour. Can't taste salt.
Went for a ride to the Christmas Tree shop. Very disorienting to walk around dizzy and deaf on one side. Could not pick out one conversation. Just a big blur of noise. Bill walked behind me to make sure no one bumped or knocked me over.
Oh, no walker now for 4 days. Just using a cane to steady myself.
The steroids are giving me insomnia. But since I am not working, I can nap whenever the need hits.
Hope you are doing well!
Carol
Can't taste sugar. Can't taste sour. Can't taste salt.
Went for a ride to the Christmas Tree shop. Very disorienting to walk around dizzy and deaf on one side. Could not pick out one conversation. Just a big blur of noise. Bill walked behind me to make sure no one bumped or knocked me over.
Oh, no walker now for 4 days. Just using a cane to steady myself.
The steroids are giving me insomnia. But since I am not working, I can nap whenever the need hits.
Hope you are doing well!
Carol
Morning!
I have a husband and 3 children, 4 counting Steph who moved in a year and a half ago! 18, 17, 16 (Steph) and 13.
I'm never here alone, if alone, it is only a matter of 30 - 40 minutes before someone is back in.
Visiting nurses will come once a week to check vitals. Physical Therapy to learn to walk with vertigo will come today for the first time - retrain my brain I think.
I don't think I need the Visiting nurses, but being on steroids the doctor asked for it, especially letting myself out so fast.
This doctor is confident I will be okay for work in 3 months. I drive 200 - 400 miles a week though. Look at numbers all day. Right now I have double vision so it is hard to read, but he is hoping the swelling in my head going down will fix this.
Always good to hear good outcomes to these things, isn't it!
Thank you again and hope your day goes great!
Carol
I have a husband and 3 children, 4 counting Steph who moved in a year and a half ago! 18, 17, 16 (Steph) and 13.
I'm never here alone, if alone, it is only a matter of 30 - 40 minutes before someone is back in.
Visiting nurses will come once a week to check vitals. Physical Therapy to learn to walk with vertigo will come today for the first time - retrain my brain I think.
I don't think I need the Visiting nurses, but being on steroids the doctor asked for it, especially letting myself out so fast.
This doctor is confident I will be okay for work in 3 months. I drive 200 - 400 miles a week though. Look at numbers all day. Right now I have double vision so it is hard to read, but he is hoping the swelling in my head going down will fix this.
Always good to hear good outcomes to these things, isn't it!
Thank you again and hope your day goes great!
Carol
Hi Carol! Glad to hear that your surgery is OVER, even though it sounds like you've had quite an ordeal. It's disappointing that they had to leave part of the tumor in, but apparently sometimes that's necessary. Bummer that it was entangled in the nerves that way.
Gosh, they DID kick you out of the hospital fast! I know a guy who had an acoustic neuroma removed and I think he spent four nights there. He is perfectly fine now, just deaf in one ear, of course. I'm sure they will talk to you about options for that.
Sorry you had the nausea and headache. When I got my Baha implant (it's minor surgery, though I did have general anesthesia), I didn't have any nausea when I woke up, but the nurse gave me a great tip: he gave me some alcohol wipes for the trip home and said if I felt nauseated, to open one up and sniff the alcohol, which quells nausea. When I had a sudden wave of nausea in the middle of the night, I tried it, and it works!! So you might keep a bottle of rubbing alcohol nearby in case you have nausea again!
Yeah, you probably really will recuperate better at home without the noise of the hospital (I spent one night in a hospital with my appendicitis-suspect daughter many years ago, and while she ended up sleeping all night, I couldn't sleep with all the buzzers going off and nurses hollering up and down the hall! :) Do you have someone to take care of you at home?
And so what does your recovery and follow-up look like from here? In any case, I bet you're glad that tumor is essentially OUT! :)
Best of luck,
Nancy
Gosh, they DID kick you out of the hospital fast! I know a guy who had an acoustic neuroma removed and I think he spent four nights there. He is perfectly fine now, just deaf in one ear, of course. I'm sure they will talk to you about options for that.
Sorry you had the nausea and headache. When I got my Baha implant (it's minor surgery, though I did have general anesthesia), I didn't have any nausea when I woke up, but the nurse gave me a great tip: he gave me some alcohol wipes for the trip home and said if I felt nauseated, to open one up and sniff the alcohol, which quells nausea. When I had a sudden wave of nausea in the middle of the night, I tried it, and it works!! So you might keep a bottle of rubbing alcohol nearby in case you have nausea again!
Yeah, you probably really will recuperate better at home without the noise of the hospital (I spent one night in a hospital with my appendicitis-suspect daughter many years ago, and while she ended up sleeping all night, I couldn't sleep with all the buzzers going off and nurses hollering up and down the hall! :) Do you have someone to take care of you at home?
And so what does your recovery and follow-up look like from here? In any case, I bet you're glad that tumor is essentially OUT! :)
Best of luck,
Nancy
Holy cow. All I can say is holy cow.
I came out fine, but they had to leave 10% of the tumor in. The MRI showed it was around 1cm but the doctor mentioned it looked speckled.
So, that was the decision to remove.
Anyway, the "speckles" were entanglement in 3 nerves. It was not just growing straight on one nerve but instead it was doing a basket weave impersonation.
Had they removed the entire tumor I would have lost the use of the right side of my face.
The tumor was 2 1/2cm - because of all the turning and twisting back on itself, the doctors said they had never seen this type of tumor do that, they grow long and bulbous, not entwine like that.
They did a quick frozen biopsy section and made the determination to leave in the 10% to save my face movement.
Came out of the anesthia alert enough to talk. Which was a good sign. But deaf in my right ear.
Could not move the right side of my face at first but almost every hour that improved.
Was so sick from the anesthia and pain meds that of course I kept throwing up, which is not good after any surgery.
Finally on Saturday I told them to stop poisoning me with pain meds and let my stomach rest, so I switched to tylenol and toughed out the pain and was able to then keep jello down Saturday afternoon.
They put you on a cortisone to reduce the swelling in your head, which I did not realize would swell up again once I was off, and on Monday night - early Tuesday morning, my head hurt so much, I could not move. So had to get codine in me, but my stomach had not thrown up in 2 days, so it was okay by now to take and keep down.
I got put back on a cortisone, very low dose, today. And my head is already able to move better and feels better.
Only spent three nights in the hospital - as soon as you can hold food down and look stable, out you go and I wanted out so bad. All night there is noise, you can't rest!
This is the first time I was able to get on and look at the computer.
Thank you for all your support!
I came out fine, but they had to leave 10% of the tumor in. The MRI showed it was around 1cm but the doctor mentioned it looked speckled.
So, that was the decision to remove.
Anyway, the "speckles" were entanglement in 3 nerves. It was not just growing straight on one nerve but instead it was doing a basket weave impersonation.
Had they removed the entire tumor I would have lost the use of the right side of my face.
The tumor was 2 1/2cm - because of all the turning and twisting back on itself, the doctors said they had never seen this type of tumor do that, they grow long and bulbous, not entwine like that.
They did a quick frozen biopsy section and made the determination to leave in the 10% to save my face movement.
Came out of the anesthia alert enough to talk. Which was a good sign. But deaf in my right ear.
Could not move the right side of my face at first but almost every hour that improved.
Was so sick from the anesthia and pain meds that of course I kept throwing up, which is not good after any surgery.
Finally on Saturday I told them to stop poisoning me with pain meds and let my stomach rest, so I switched to tylenol and toughed out the pain and was able to then keep jello down Saturday afternoon.
They put you on a cortisone to reduce the swelling in your head, which I did not realize would swell up again once I was off, and on Monday night - early Tuesday morning, my head hurt so much, I could not move. So had to get codine in me, but my stomach had not thrown up in 2 days, so it was okay by now to take and keep down.
I got put back on a cortisone, very low dose, today. And my head is already able to move better and feels better.
Only spent three nights in the hospital - as soon as you can hold food down and look stable, out you go and I wanted out so bad. All night there is noise, you can't rest!
This is the first time I was able to get on and look at the computer.
Thank you for all your support!
Thanks! OCD --- had to check email before going in. *^* It is 5:20 now - and heading in for 5:30 --- have to register for 6:30 - surgery won't start maybe until 7:30 or 8 ?? Prep time
Talk to you soon!
Carol
Talk to you soon!
Carol
GOOD LUCK!!! I hope everything goes smoothly and that you have a speedy recovery!
Nancy
Nancy
Hi there, in case you still check these.... I'm going in for surgery tomorrow 10/29/09. Yale New Haven. As soon as I am able to post, I'll update.
Wish me luck!
Carol
Wish me luck!
Carol
Morning,
Slept 9 hours last night. Think it was because I finally let myself cry.
I am going to clean the house today, first day that I have absolutely nothing scheduled in weeks!
Darn ringing gets so loud sometimes that I cannot tell the difference between the crickets outside and the ringing in my head. Then sometimes it is like a teapot whistle going off. And sometimes it can be drowned out with the other things going on like the TV or kids talking ---
Sent my MRIs to the doctor in Missouri that worked on my brothers ears. He said he would look and let me know if it is something he would be able to help with and I could go out there or he would find me someone in my area that he thought was qualified.
Nice of him and great to get a 2nd opinion.
Enjoy the day! SO much fog and rain here today.
I'm in Connecticut
Thank you again,
Carol
Slept 9 hours last night. Think it was because I finally let myself cry.
I am going to clean the house today, first day that I have absolutely nothing scheduled in weeks!
Darn ringing gets so loud sometimes that I cannot tell the difference between the crickets outside and the ringing in my head. Then sometimes it is like a teapot whistle going off. And sometimes it can be drowned out with the other things going on like the TV or kids talking ---
Sent my MRIs to the doctor in Missouri that worked on my brothers ears. He said he would look and let me know if it is something he would be able to help with and I could go out there or he would find me someone in my area that he thought was qualified.
Nice of him and great to get a 2nd opinion.
Enjoy the day! SO much fog and rain here today.
I'm in Connecticut
Thank you again,
Carol
Hi Carol. Since the tinnitus (ringing) is actually a noise that your brain "makes up," I don't think you're likely to lose it, unfortunately, but you will get used to it. I have it constantly but am very used to it and it doesn't bother me at all--I don't even notice it unless I actually think about it.
Bummer about losing feeling in the face. I hope you will have success like this woman you read about.
Cry all you need to... this must be a shocking experience for you, and you have a hard road ahead, but you will come out OK on the other end. The surgical procedures they have now are very good. Take care.
Nancy
Bummer about losing feeling in the face. I hope you will have success like this woman you read about.
Cry all you need to... this must be a shocking experience for you, and you have a hard road ahead, but you will come out OK on the other end. The surgical procedures they have now are very good. Take care.
Nancy
Hi Nancy,
Losing hearing in one ear does not worry me, it was the feeling in my face. I read online and they do have to sever the nerve to remove a facial nerve neuroma. But one lady had luck with them doing a transplant of a neck nerve to the area - after 8 months or so, the nerve actually began to attach and get some feeling back to her face.
If I am deaf in one ear, does the ringing continue?
Can't seem to find that answer. My brother said he always heard it, even when he was little and didn't know it was anything different than what anyone else had in their head.
Had a good cry yesterday, first time since finding out. My husband was shocked it took that long to cry - been 3 weeks since I first found out there was a tumor at all.
Thanks for all help!
Carol
Losing hearing in one ear does not worry me, it was the feeling in my face. I read online and they do have to sever the nerve to remove a facial nerve neuroma. But one lady had luck with them doing a transplant of a neck nerve to the area - after 8 months or so, the nerve actually began to attach and get some feeling back to her face.
If I am deaf in one ear, does the ringing continue?
Can't seem to find that answer. My brother said he always heard it, even when he was little and didn't know it was anything different than what anyone else had in their head.
Had a good cry yesterday, first time since finding out. My husband was shocked it took that long to cry - been 3 weeks since I first found out there was a tumor at all.
Thanks for all help!
Carol
Hi Carol. Sorry your brother had such a bad experience with the cochlear implants. What a bummer.
I don't really know anything about possible options for treating your neuroma. The folks on the AN board will no doubt be able to give you some advice. Sometimes those tumors just have to be taken out (to avoid further damage and putting pressure on the brainstem) and it often entails loss of hearing. But most people adapt very well to one-sided deafness--and there are much better options than even a few years ago. My hearing loss occurred in 1999, and at that time the only option was CROS aid, which the docs and audiologists all told me I probably wouldn't like. Now there is Baha! and TransEar. So, please don't be too discouraged.
Actually, it didn't hurt at all when I lost my hearing. Just sneezed (twice), and immediately noticed that I couldn't hear well out of that ear, it was ringing, and I was extra dizzy! Probably a blood-vessel blockage (stroke in the ear). Yeah, it was weird!
Nancy
I don't really know anything about possible options for treating your neuroma. The folks on the AN board will no doubt be able to give you some advice. Sometimes those tumors just have to be taken out (to avoid further damage and putting pressure on the brainstem) and it often entails loss of hearing. But most people adapt very well to one-sided deafness--and there are much better options than even a few years ago. My hearing loss occurred in 1999, and at that time the only option was CROS aid, which the docs and audiologists all told me I probably wouldn't like. Now there is Baha! and TransEar. So, please don't be too discouraged.
Actually, it didn't hurt at all when I lost my hearing. Just sneezed (twice), and immediately noticed that I couldn't hear well out of that ear, it was ringing, and I was extra dizzy! Probably a blood-vessel blockage (stroke in the ear). Yeah, it was weird!
Nancy
Hi again, I signed up and became a member of that website for neuromas. My husband said just because this one doctor at Yale is saying I will lose my hearing and feeling in my face no matter what I do, that I should not just give up and give in. I should look for another doctor or hospital that maybe had better luck?
Such a weird thing to have, maybe they just don't know enough about it yet.
Sneezing yourself deaf. That's something! Must have hurt like heck when you sneezed hard enough to damage your hearing like that.
My brother was born with degenerative nerve something or other - to both his ears - just born that way, nothing happened.
He was deaf to certain tones and pitches. We, as a family, learned to speak to him in a tone he could hear, which to others, sounded harsh or like we were being mean or yelling at him, but it was the only way he could understand us.
He was nearly 100% deaf by the time he was 50, and finally gave in and got implants.
Cochlear Implants -
One ended up not healing right, left a hole behind his ear, which was infected, drained, etc... - had to reoperate. He's been home since March dealing with infections, more surgery...
One ear went fine.
Well, never know how things will turn out!
SO glad you can hear again!
Talk to you soon,
Carol
Such a weird thing to have, maybe they just don't know enough about it yet.
Sneezing yourself deaf. That's something! Must have hurt like heck when you sneezed hard enough to damage your hearing like that.
My brother was born with degenerative nerve something or other - to both his ears - just born that way, nothing happened.
He was deaf to certain tones and pitches. We, as a family, learned to speak to him in a tone he could hear, which to others, sounded harsh or like we were being mean or yelling at him, but it was the only way he could understand us.
He was nearly 100% deaf by the time he was 50, and finally gave in and got implants.
Cochlear Implants -
One ended up not healing right, left a hole behind his ear, which was infected, drained, etc... - had to reoperate. He's been home since March dealing with infections, more surgery...
One ear went fine.
Well, never know how things will turn out!
SO glad you can hear again!
Talk to you soon,
Carol
Hi Carol--You are right that doctors are trained to look for obvious causes. I had never heard of a facial-nerve neuroma either. Glad you got a correct diagnosis--although I'm not sure whether the treatment is any (or much) different--the facial nerve and the hearing nerve run very close together, as you've probably found out. The surgery for acoustic neuroma is done by an ENT and a neurosurgeon working together--it's called skull base surgery--and I'm guessing your surgery and results (hearing loss) will be pretty much the same as what people on the acoustic neuroma forum have experienced.
I was lucky--I had a sudden one-sided hearing loss (when I sneezed) but did not have an acoustic neuroma. I now have a BAHA (bone-anchored hearing aid), which you will see mentioned on the ANA board. I love it!! If the surgery leaves you deaf on one side, the BAHA can be a great option (there is also a CROS aid, an older option that many people don't like, and TransEar, which is a fairly new device). I am very happy I had the BAHA done, as I don't have to struggle to hear on my left side now.
Very best of luck to you!
Nancy
I was lucky--I had a sudden one-sided hearing loss (when I sneezed) but did not have an acoustic neuroma. I now have a BAHA (bone-anchored hearing aid), which you will see mentioned on the ANA board. I love it!! If the surgery leaves you deaf on one side, the BAHA can be a great option (there is also a CROS aid, an older option that many people don't like, and TransEar, which is a fairly new device). I am very happy I had the BAHA done, as I don't have to struggle to hear on my left side now.
Very best of luck to you!
Nancy
Hi,
I went to the ENT at Yale New Haven Hospital yesterday. He said I do not have an Acoustic Neuroma, I have a Facial Nerve Neuroma, and is sending me for a more detailed CT scan on 9/11/09 - He said they are rare and that is why the first doctor assumed it was an Acoustic Neuroma.
First symptoms - back in the winter (which I never sought help for) Eyelid and under eye twitch. Thought I was tired. Twitched for 3 - 4 weeks. Next was the darn tinnitus, which I know plenty of people have, so I ignored that.
The tinnitus was so loud at times I would say to my family - or anyone in the room.... "You don't hear that, REALLY? You do not hear that?? "
The next thing - which did send me to the doctor---- was my right cheek,, under my eye, down to my lip and up to my ear (and inside my ear) felt like someone gave me novicane.
Took from June 21 to just now to get an answer.
The ENT at Yale said that if it was an acoustic neuroma - I would have lost some if not most of my hearing by now, and my hearing is fine. And since the face was the first symptom, it has to be a facial nerve.
The MRI shows the area, which is LOADED with nerves.
And doctors are trained to look for the obvious causes, not the rare, chasing a red-herring cause.
I just seem to have that red herring?
I thank you for the link to the acoustic neuroma site, I will see if they have any information on Facial Neuromas.
Thank you so much for being online!
Carol
I went to the ENT at Yale New Haven Hospital yesterday. He said I do not have an Acoustic Neuroma, I have a Facial Nerve Neuroma, and is sending me for a more detailed CT scan on 9/11/09 - He said they are rare and that is why the first doctor assumed it was an Acoustic Neuroma.
First symptoms - back in the winter (which I never sought help for) Eyelid and under eye twitch. Thought I was tired. Twitched for 3 - 4 weeks. Next was the darn tinnitus, which I know plenty of people have, so I ignored that.
The tinnitus was so loud at times I would say to my family - or anyone in the room.... "You don't hear that, REALLY? You do not hear that?? "
The next thing - which did send me to the doctor---- was my right cheek,, under my eye, down to my lip and up to my ear (and inside my ear) felt like someone gave me novicane.
Took from June 21 to just now to get an answer.
The ENT at Yale said that if it was an acoustic neuroma - I would have lost some if not most of my hearing by now, and my hearing is fine. And since the face was the first symptom, it has to be a facial nerve.
The MRI shows the area, which is LOADED with nerves.
And doctors are trained to look for the obvious causes, not the rare, chasing a red-herring cause.
I just seem to have that red herring?
I thank you for the link to the acoustic neuroma site, I will see if they have any information on Facial Neuromas.
Thank you so much for being online!
Carol
Hi Carol--good luck to you! There is an active acoustic neuroma board at www.anausa.org (Acoustic Neuroma Association).
Nancy
Nancy
Hi NaMemPhesh and Nancy T, I'm new here.
I went to the ER with facial numbness. Felt like someone put novicane in my ear and jaw and cheek. This was on June 21, 2009. They took a CT scan to make sure I didn't have a stroke. Sent me home with anti-biotics. (brilliant, right?)
The facial numbness came and went but the ear always felt numb. HIGH pitched ringing. Sometimes worse sometimes mild. Always there. Coincidentally, my hands were going numb and cramping and shaking, so the doctor sent me to a neurologist.
Now this is over a month of a numb face and ear, must be late July by now.
So, he orders an MRI of the neck (for my hands) - I have a C6 C7 disc problem, degeneration - but it is not impinging on nerves (turns out I have carpal tunnel in both hands....)
Anyway, he also orders a head MRI and MRA - shows the Vestibular Schwannoma (Acoustic Neuroma).
Small, just enough to have issues. 1cm x .82 cm... something like that.
The fullness in your ear, is it numbness?
Anyway, now that I know what is wrong, I am seeing an ENT specialist in neuromas - at Yale New Haven Hospital.
Let me know how you make out, I'll come back and post after I see what the ENT Specialist says I have to do.
Good luck to you!
Carol
I went to the ER with facial numbness. Felt like someone put novicane in my ear and jaw and cheek. This was on June 21, 2009. They took a CT scan to make sure I didn't have a stroke. Sent me home with anti-biotics. (brilliant, right?)
The facial numbness came and went but the ear always felt numb. HIGH pitched ringing. Sometimes worse sometimes mild. Always there. Coincidentally, my hands were going numb and cramping and shaking, so the doctor sent me to a neurologist.
Now this is over a month of a numb face and ear, must be late July by now.
So, he orders an MRI of the neck (for my hands) - I have a C6 C7 disc problem, degeneration - but it is not impinging on nerves (turns out I have carpal tunnel in both hands....)
Anyway, he also orders a head MRI and MRA - shows the Vestibular Schwannoma (Acoustic Neuroma).
Small, just enough to have issues. 1cm x .82 cm... something like that.
The fullness in your ear, is it numbness?
Anyway, now that I know what is wrong, I am seeing an ENT specialist in neuromas - at Yale New Haven Hospital.
Let me know how you make out, I'll come back and post after I see what the ENT Specialist says I have to do.
Good luck to you!
Carol
Some good information here, from a highly respected neurologist specializing in dizziness and hearing:
http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm
When I had a sudden hearing loss, the ENT didn't even bother with the ABR--he went straight for the MRI with gadolinium (it was negative).
Your insurance "may not pay", he says? Has he even asked? Personally, I'd want an MRI--it seems that most people with problems such as yours get them.
Fullness and pain doesn't sound like an acoustic neuroma, but the rest of your symptoms could be one (most likely not, of course, but if I were in your shoes I'd certainly wonder). I agree with getting a second opinion.
In the ten days between reading that acoustic neuroma sometimes presents with sudden hearing loss--and finding out how dangerous ANs can be--and getting the results of the MRI, I couldn't think about anything else except the possibility of an acoustic neuroma. Getting the MRI was a huge relief!
Good luck to you.
http://www.dizziness-and-balance.com/disorders/tumors/acoustic_neuroma.htm
When I had a sudden hearing loss, the ENT didn't even bother with the ABR--he went straight for the MRI with gadolinium (it was negative).
Your insurance "may not pay", he says? Has he even asked? Personally, I'd want an MRI--it seems that most people with problems such as yours get them.
Fullness and pain doesn't sound like an acoustic neuroma, but the rest of your symptoms could be one (most likely not, of course, but if I were in your shoes I'd certainly wonder). I agree with getting a second opinion.
In the ten days between reading that acoustic neuroma sometimes presents with sudden hearing loss--and finding out how dangerous ANs can be--and getting the results of the MRI, I couldn't think about anything else except the possibility of an acoustic neuroma. Getting the MRI was a huge relief!
Good luck to you.
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