ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mar on April 29, 2015, 10:33:14 am
-
I asked my ophthalmologist and he said he'd never heard of this before. I had a right side AN removed in February (>4cm, retrosigmoidal approach). I am deaf in the affected ear but I still have tinnitus.
Anyway, my tinnitus gets higher and lower in pitch depending on where my right eye is looking. If I am looking to my right, the pitch gets higher and if I am looking to my left, the pitch gets lower. (If I cross my eyes, the pitch gets lower, so I think it's only related to where my right eye is pointed.)
I have an appointment with my neurosurgeon coming up in May. I am hoping that my facial function will some day return to normal or near-normal (I am assessed at 44/100) but it's hard to keep hope. I am closing my eye more often, which is helping distribute some tears, although it's not as much as normal. I still have double vision. But this tinnitus thing is just weird. Have you ever had something like this happen to you?
-
Hi mar .....
My AN was (optimistically here) on the left, and was surgically removed twice. I, as well, experience tinnitus change on eye movement. Mine does not change pitch, but when I look to the left it is suddenly much louder. When I look to the right it is louder but not as much. When I look down or up it is gets a tiny bit louder. I cannot tell any difference when I cross my eyes.
I think we all are unique so that probably accounts for the difference. I have had no facial paralysis so mine is not connected to that.
Maybe someone can tell us the scientific reason this occurs. (I think there was a thread started several years ago about this.)
Clarice
-
I have this too. It is called "gaze evoked" tinnitus. It is a small amount of tinnitus sufferers who experience this.
I find it quite entertaining...a positive way to look at it I guess.
-
The lucky few! I don't notice it much any more, but mine gets really high when I look up and away or just away from the affected side--but NOT when I cross my eyes (I had never tested that before). It pretty much stays the same pitch otherwise.
-
CHD63- I am just not sure what nerves are talking to each other. I could live with the tinnitus, the ataxia, and the double vision if my face would just wake up. :( But with it all together it's a lot to handle.
Kerrybr92 - Thank you so much! I am looking up literature on this phenomenon as I write this. I had trouble coming up with good search terms when I tried to google it myself. I was also not sure if this was real, since my opthamologist had never heard of it, and he is pretty familiar with acoustic neuromae. Or so I thought. It's a relief to find out this is a known side effect of surgery.
Kristena - I don't notice the tinnitus as much, but it's always there. I wore an eye patch for about two months before I got prisms, and I really noticed it when I was able to look right and see things. (Before that I would turn my head to look to my right.)
So relieved to hear this has a name and that other people experience it! Thanks everyone!
-
Quite a few resources for "gaze evoked tinnitus" in the following search results:
https://encrypted.google.com/#q=gaze+evoked+tinnitus
-
I have this too. It is called "gaze evoked" tinnitus. It is a small amount of tinnitus sufferers who experience this.
I find it quite entertaining...a positive way to look at it I guess.
I experience this, too. I am 4 years post retrosigmoid and when I look to the right, my tinnitus gets very loud and the pitch increases. When I look to the left my tinnitus gets slightly louder but the pitch remains the same. When I look straight ahead, up, or down, it's much lower and quieter after the initial movement, where i hear it get momentarily louder, but then it resolves into the normal hissing. My opthalmologist had never heard of this either, and looked at me like I had corn growing out of my ears when I described it. I had to turn to Dr. Google to find the term "gaze-evoked tinnitus."
Interesting article: http://www.ncbi.nlm.nih.gov/pubmed/11568674
-
Thank you arizonajack and Anasazi42. I am going to email that pubmed article to my ophthalmologist for the next time someone mentions this to him. Although this type of neuroma is apparently relatively uncommon and gaze-evoked tinnitus less common still. Oh well.
-
When I first read this post I thought: "hmmm...that seems strange I have never heard of or experienced that before." Then yesterday I was laying in bed trying to sleep, listening to the never ending whine in my left ear when I looked to my right. To my surprise the tinnitus in my ear immediately increased significantly in pitch. I tried looking the other direction and the pitch increased even more. I get the lowest pitch looking straight ahead, and a higher pitch looking right, and and even higher pitch looking left.
Its unmistakable now, but somehow I never really noticed it before in all the years I have had it. Maybe its more common that people realize but many tinnitus sufferers don't really notice or think too hard about it.
Just thought I would share my experience.
-
Thank you arizonajack and Anasazi42. I am going to email that pubmed article to my ophthalmologist for the next time someone mentions this to him. Although this type of neuroma is apparently relatively uncommon and gaze-evoked tinnitus less common still. Oh well.
Maybe acoustic neuromas aren't as uncommon as previously thought? Maybe gaze-evoked tinnitus is uncommon but has simply been accepted as of minor-importance compared with tinnitus itself, a condition that also can ruin lives. Maybe they're like the apparent increase in autistism? Perhaps none are really changing but it's down to society's greater awareness of these conditions, doctors, sufferers and carers alike?
Maybe as the conditions get more attention the true occurrence level of all of them will be better understood?
-
Acoustic neuromas will still be a relatively rare condition, I think. Compared to rates of heart attack (1.5 million per year in the US), strokes (130,000/year in the US), new breast cancers (60,000 last year in the US), there are about 3,000 new acoustic neuromas diagnosed in the US per year. Compared to the patients my family doctor sees every day, and even the patients my ENT sees every day, my case remains relatively unusual. My ENT even told me, when ordering the MRI, that it was a long shot, but he wanted to rule out anything serious. We were all surprised by the results.
And I don't think my opthalmologist will see that many acoustic neuroma patients in a year, but I forwarded the study to him anyway. And who knows? Maybe acoustic neuromas will have increased attention and diagnosis the way autism did, although I still think heart disease and various cancers will still be the major cause for public health concern.
-
Autism increased because they changed the definition of autism and Federal money flowed into education for students who were classified as having it.
If they change the definition of AN and hand out money for it, AN's will skyrocket as well.
-
Autism increased because they changed the definition of autism and Federal money flowed into education for students who were classified as having it.
If they change the definition of AN and hand out money for it, AN's will skyrocket as well.
Autism showed an apparently-increased incidence in the UK where I live yet no additional money had flowed into our education system. (we don't yet do federal although Europe might like us to be part of that federation ;) ) There's still a dearth of special needs provision in the UK for autistic kids and others with different learning difficulties.
The provision of appropriate funding remains a pipe dream.
-
Acoustic neuromas will still be a relatively rare condition, I think. Compared to rates of heart attack (1.5 million per year in the US), strokes (130,000/year in the US), new breast cancers (60,000 last year in the US), there are about 3,000 new acoustic neuromas diagnosed in the US per year. Compared to the patients my family doctor sees every day, and even the patients my ENT sees every day, my case remains relatively unusual. My ENT even told me, when ordering the MRI, that it was a long shot, but he wanted to rule out anything serious. We were all surprised by the results.
And I don't think my opthalmologist will see that many acoustic neuroma patients in a year, but I forwarded the study to him anyway. And who knows? Maybe acoustic neuromas will have increased attention and diagnosis the way autism did, although I still think heart disease and various cancers will still be the major cause for public health concern.
How rare is rare? Compared with the illnesses you've mentioned they are rare but that doesn't mean they're as rare as often is suggested. Time will tell just what the 'normal' level is.
-
Acoustic neuromas will still be a relatively rare condition, I think. Compared to rates of heart attack (1.5 million per year in the US), strokes (130,000/year in the US), new breast cancers (60,000 last year in the US), there are about 3,000 new acoustic neuromas diagnosed in the US per year. Compared to the patients my family doctor sees every day, and even the patients my ENT sees every day, my case remains relatively unusual. My ENT even told me, when ordering the MRI, that it was a long shot, but he wanted to rule out anything serious. We were all surprised by the results.
And I don't think my opthalmologist will see that many acoustic neuroma patients in a year, but I forwarded the study to him anyway. And who knows? Maybe acoustic neuromas will have increased attention and diagnosis the way autism did, although I still think heart disease and various cancers will still be the major cause for public health concern.
How rare is rare? Compared with the illnesses you've mentioned they are rare but that doesn't mean they're as rare as often is suggested. Time will tell just what the 'normal' level is.
Well I said "relatively rare" so I meant "relative to the rest of the doctor's practice, it's rare." I even pointed out how uncommon it is for AN to be as devastating as heart disease and cancer, and I for one feel very lucky that I have an essentially survivable condition, even if I do have extreme side effects and have a 50% chance of going deaf in my lifetime. At least my lifetime is another 50-60 years. Hope that cleared things up more than the other two posts I made on the subject, because I'm not really going to defend my word choices endlessly, especially since you keep bringing up an issue that's really off topic for this thread. If you want to talk about AN rates and diagnosis, might I humbly suggest you start a new thread?
-
Autism increased because they changed the definition of autism and Federal money flowed into education for students who were classified as having it.
If they change the definition of AN and hand out money for it, AN's will skyrocket as well.
Autism showed an apparently-increased incidence in the UK where I live yet no additional money had flowed into our education system. (we don't yet do federal although Europe might like us to be part of that federation ;) ) There's still a dearth of special needs provision in the UK for autistic kids and others with different learning difficulties.
The provision of appropriate funding remains a pipe dream.
What they did here was to decide that every child that isn't exactly the same as every other child is now autistic. Some of those kids are truly autistic. Other kids have some special need that is not, IMO, truly autism. But, they made everything "autism" since that is where the money is. Most of the kids, IMO, are actually perfectly normal and there is nothing "wrong" with them. Since a kid who is perfectly normal, but not getting straight A' in all of their classes doesn't seem to satisfy the schools and their endless lust for public funding, or the parent's who don't want to accept that their kid is just average intelligence or maybe just not that fascinated with school to engage their studies enough to get perfect scores on everything they do, you see them all "diagnosed" with autism.
It used to "ADHD", then it was "autism", and I've noticed lately that many are now classified as both. It's a real mess with no end in sight. When I think back about all of the kids in my class when I was growing up, including me, and ponder what these experts would have done with them if they had the chance back then, it blows my mind.
Bill Gates never graduated college, many of our greatest leaders were brawlers and drop-outs, even involved in criminal activity. Now, anybody like that is classified as "something", medicated and/or put in special programs that all but ensure they will never accel at much of anything.
My buddy's daughter is a great example. She is brilliant, but socially and physically awkward. He's very sensitive about it, so I don't know what name had been assigned to her "condition" because I never wanted to ask him about it directly, but I know she was considered something along the "autism spectrum". Come to find out, that a different medical Dr (as opposed to the school psychologists etc) just sent her for an MRI which revealed some type of cysts on her brain. All of these years with special this and that to teach her how to be "autistic" and she has had a serious brain tumor condition that she could have died from if it weren't for them finally getting to the right professional that actually knows a thing or two about what he is doing.
-
Acoustic neuromas will still be a relatively rare condition, I think. Compared to rates of heart attack (1.5 million per year in the US), strokes (130,000/year in the US), new breast cancers (60,000 last year in the US), there are about 3,000 new acoustic neuromas diagnosed in the US per year. Compared to the patients my family doctor sees every day, and even the patients my ENT sees every day, my case remains relatively unusual. My ENT even told me, when ordering the MRI, that it was a long shot, but he wanted to rule out anything serious. We were all surprised by the results.
And I don't think my opthalmologist will see that many acoustic neuroma patients in a year, but I forwarded the study to him anyway. And who knows? Maybe acoustic neuromas will have increased attention and diagnosis the way autism did, although I still think heart disease and various cancers will still be the major cause for public health concern.
How rare is rare? Compared with the illnesses you've mentioned they are rare but that doesn't mean they're as rare as often is suggested. Time will tell just what the 'normal' level is.
Well I said "relatively rare" so I meant "relative to the rest of the doctor's practice, it's rare." I even pointed out how uncommon it is for AN to be as devastating as heart disease and cancer, and I for one feel very lucky that I have an essentially survivable condition, even if I do have extreme side effects and have a 50% chance of going deaf in my lifetime. At least my lifetime is another 50-60 years. Hope that cleared things up more than the other two posts I made on the subject, because I'm not really going to defend my word choices endlessly, especially since you keep bringing up an issue that's really off topic for this thread. If you want to talk about AN rates and diagnosis, might I humbly suggest you start a new thread?
As for being off-topic you introduced statistics to support your argument - I was only making an observation. I have no interest in talking about the incidence and diagnosis of acoustic neuromas. We've both become side-tracked from the subject of this thread, that of tinnitus changing pitch. I'm stopping. :)
-
Autism increased because they changed the definition of autism and Federal money flowed into education for students who were classified as having it.
If they change the definition of AN and hand out money for it, AN's will skyrocket as well.
Autism showed an apparently-increased incidence in the UK where I live yet no additional money had flowed into our education system. (we don't yet do federal although Europe might like us to be part of that federation ;) ) There's still a dearth of special needs provision in the UK for autistic kids and others with different learning difficulties.
The provision of appropriate funding remains a pipe dream.
What they did here was to decide that every child that isn't exactly the same as every other child is now autistic. Some of those kids are truly autistic. Other kids have some special need that is not, IMO, truly autism. But, they made eve...........ve died from if it weren't for them finally getting to the right professional that actually knows a thing or two about what he is doing.
It would be an interesting debate to have with you but as mar points out this is not the place. :)
-
Autism increased because they changed the definition of autism and Federal money flowed into education for students who were classified as having it.
If they change the definition of AN and hand out money for it, AN's will skyrocket as well.
Autism showed an apparently-increased incidence in the UK where I live yet no additional money had flowed into our education system. (we don't yet do federal although Europe might like us to be part of that federation ;) ) There's still a dearth of special needs provision in the UK for autistic kids and others with different learning difficulties.
The provision of appropriate funding remains a pipe dream.
What they did here was to decide that every child that isn't exactly the same as every other child is now autistic. Some of those kids are truly autistic. Other kids have some special need that is not, IMO, truly autism. But, they made eve...........ve died from if it weren't for them finally getting to the right professional that actually knows a thing or two about what he is doing.
It would be an interesting debate to have with you but as mar points out this is not the place. :)
You are correct. I definitely got off-track not only for this thread, but for the whole board in general.
-
I was giving statistics in response to your attack on me for calling this condition relatively rare.
I can see now that support is really only meant for "certain" people who have acoustic neuromas. Well, don't worry, I won't bother with you or your thread hijacking anymore. I came to you people for help, and I got a half dozen posts about autism instead. So thanks for that.
-
I was giving statistics in response to your attack on me for calling this condition relatively rare.
I can see now that support is really only meant for "certain" people who have acoustic neuromas. Well, don't worry, I won't bother with you or your thread hijacking anymore. I came to you people for help, and I got a half dozen posts about autism instead. So thanks for that.
my attack on you? You certainly do need help but I'm sorry you misunderstood what I was saying. mea culpa - I'm leaving this thread.
-
I also have the same problem tinnitus in my deaf ear that changes pitch.
-
Hi all,
Well, was hoping this thread would stay on topic and helpful and yet... it took a slight turn.
We remind everyone that we ARE watching closely and hope that you all can respectfully discuss the topic at hand, which is "Tinnitus Changing Pitch," in which I can certainly relate, as many do.
Mine it typically high-pitch monotone... and yet, I have had pulsating tinnitus (especially when stressed) and have even heard "crickets."
Also want to say "welcome" to Bzmonster.
So, let's keep this on topic, as I know this is an important topic that many can learn.
Now, back to your regularly scheduled discussion.
Thanks.
Phyl