ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: mesafinn on April 03, 2013, 07:22:20 am
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About eight months ago I started to notice my heart beating in my left ear. My GP eventually dx pulsatile tinnitus, and after ruling out an infection gave me an ultrasound to rule out a clogged artery. The pulsatile tinnitus increased dramatically (very loud beating heart, daily, unbearable when trying to sleep, always noticeable when quiet) and my GP eventually sent me for an MRI which detected the AN in my left ear.
Yesterday, a specialist said he did not think that there's a correlation between the pulsatile tinnitus, which he said is vascular in nature, and my AN. He said it was a coincidence that the pulsatile tinnitus lead to the discovery of the AN.
I've only noted a few people here who noted they have pulsatile tinnitus. I also have tinnitus (various sounds in my ear, usually high-pitched ringing) which is different than the pulsatile tinnitus which is the hearing of the pulsating heartbeat in the ear.
What has been people's experience with pulsatile tinnitus (p.t.)? And I've posted here because I'm thinking of having GK, and I'm wondering what effect, if any, the radiation will have on the pulsatile tinnitus which can sometime be debilitating. Will it decrease the p.t.? Or, might it be better to have surgery to stop the p.t.? The specialist wasn't sure because he wasn't convinced the AN and the p.t are related--but he suspected surgery would give a "50% chance" of stopping the p.t. He had no input on what the impact of GK might have on the p.t.
Any thoughts from the experts here?!
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Hi,
I went to an ENT a few years ago because of pulsatile tinnitus in my left ear and was basically given a bill of good health since my hearing tested out perfectly. Needless to say, two years later I became deaf overnight in the same ear and was diagnosed with a medium sized AN that was most certainly there at the time of the initial pulsatile tinnitus. My ENT never sent me for an MRI (though I've found guidelines that clearly say that is what should be done in cases of unilateral tinnitus, although it doesn't seem to be done all the time) and I certainly wish he had! Maybe I would have kept my hearing and made a decision about treatment when my AN was smaller and I was less symptomatic.
However, after about 6 weeks or so of hearing my pulse in my ear, the initial tinnitus went away. It didn't come back until I suddenly lost the hearing (probably due to nerve compression) and when it did come back, it wasn't pulsatile anymore but sounds variously like Morse code, the sound lighthouses make to warn ships of land when it's foggy, and a variety of other interesting noises.
I have had gamma knife and it hasn't really affected the tinnitus one way or the other. As I'm closer to the sixth month mark, it's possible that I have it more continuously than before treatment, but I am mostly able to ignore it, especially when it's noisy. I am no expert, but from everything I've read, neither treatment seems to affect the tinnitus one way or the other. I think it's mostly your brain's response to loss of hearing. You don't note hear how your hearing is-- perhaps that is more important than surgery v. GK? Perhaps other people can weigh in on whether the presence of tinnitus might affect the choice of treatment. I am not sure I would choose surgery solely on the hope that it might get rid of tinnitus; I have not come across evidence that indicates that it does. What do other people think?
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Thanks, Maxine. My hearing is still relatively good in both ears, although I've gone from about 95% to 80% in the past few months for my AN ear. My doc says that I will lose my hearing completely in the next 3-5 years. I'm leaning toward GK to try and prevent that.
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Hi, I've had this before and after diagnosis. I thought before the AN was discovered it was anaemia causing it, and it was in time with my pulse point on my wrist.
I'd say it is now, 3.5 months post SRS linac, more often a continuous whoosh or roar, but sometimes pulses! It gets worse/ louder on bending down and lowering head position. (Blood rushing to head?) This position change also makes my head spin more (I've very bad imbalance and dizziness, since SRS more like vertigo 24/7).
SRs has not improved the tinnitus but it's part of life now. Can't recall what it was like to not have a constant whoosh in my left ear!
Best wishes Alison
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Hi mesafin;
You wrote: "Yesterday, a specialist said he did not think that there's a correlation between the pulsatile tinnitus, which he said is vascular in nature, and my AN. He said it was a coincidence that the pulsatile tinnitus lead to the discovery of the AN.
Seems there are too many reports of pulsitile tinnintus for it to be a coincidence in relation to an AN. The tumor might be pushing either a blood vessel closer to the cochlea, or, the cochlea closer to a blood vessel.
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I don't disagree! I think it's a strange coincidence, and I'm not convinced.
But I've had two neurosurgeons saying they think my pulsatile tinnitus is not AN-related and suspect it might be a vascular lesion. Having said that, they don't think ANs cause fatigue (pre or post treatment) and too many others here suggest otherwise, too.
They want to do a carotid and vertebral angiogram or CT scan (more radiation as I'm post-GK), and I'm reluctant.
Sigh. It gets so confusing....!
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I have not had the pulsatile tinnitus, however I do have constant tinnitus with some of the whoosh and roar that Alison mentioned.
(Alison, my vertigo and balance has actually improved the last couple of month so I'm hoping yours will too)
It surprised me that you mentioned surgery to improve the tinnitus, my surgeon advised that AN removed would make the vertigo and tinnitus worst during the short term.
I may be completely wrong on this theory, but I can not help but wonder if there is a corelation between your AN location and some tissue that can conduct sound. That is the same principal that the BAHA works upon.
I wish you luck in minimizing the tinnitus.
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Hi,
interesting that we get told by the docs it is not AN related but it makes sense reading these posts that it may well be.
Thanks down on the farm, I'm glad your vertigo and imbalance have improved, it gives me hope!
Alison
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Hi;
"But I've had two neurosurgeons saying they think my pulsatile tinnitus is not AN-related and suspect it might be a vascular lesion. Having said that, they don't think ANs cause fatigue (pre or post treatment) and too many others here suggest otherwise, too.
They want to do a carotid and vertebral angiogram or CT scan (more radiation as I'm post-GK), and I'm reluctant."
Focused beam radiation to an AN doesn't spread far, but CT gives a dose as much as 400 xs that of a chest x-ray. Of course, one must remember all radiation is culmulative in a life time.
Is it possible 2 neurosurgeons could be 'barking up a tree' considering they are wishing to explore something non life threatening? The tinnitus may change or improve w/o intervention/tests/etc.
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Hi,
I had pulsatile tinnitus about a 1-1/2 years before my AN was discovered. I too was sent for a sonogram to check my carotid artery. After about 3 months, it went away and never came back.
And then 1-1/2 years later came the hearing loss . . . the MRI . . . the diagnosis of an AN. My ENT also is not convinced that they are connected.
I haven't had the pulsatile tinnitus since then, but I was very anxious about it at the time. I have constant regular tinnitus that goes between a loud roar and a softer roar. ::)
Bobette
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I too have a similar story. Pulsatile tinnitus, went to ENT, perfect hearing test so no MRI ordered, pulsatile tinnitus went away after about 6 weeks, then two years later, went deaf in same ear overnight and was subsequently diagnosed with AN. I can't remember where but I have since then found some guidelines that say whenever there is tinnitus in one ear only, MRI should be ordered. I now have constant tinnitus although it's not pulsatile.
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I have had high frequency tinnitus for the past year. However, I did not experience pulsatile tinnitus until about two months after my CK treatments. It lasted on and off for about a month, and now it is gone. I am certain that it was just another "fun" but temporary (hopefully) AN symptom.
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As summer approaches, I've been using a fan while I sleep and the white noise minimizes the pulsatile tinnitus. But, I've noticed the next day I have stronger tinnitus--more ringing in my ears. I've experimented, and when I don't use the fan, I don't have as much ringing the next day as when I use the fan. So there's a positive effect with the pulsatile tinnitus but a negative effect with the tinnitus.
I'm wondering if anyone has a recommendation for "masking" or noise machines/sound machines that they use and are happy with to help with their tinnitus?
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I have had pulsatile tinnitus since October 2012 in right ear and ALSO ear pain. Neither of these are a symptom, but what do you know I have an AN in that ear! I was the one who persisted when ENT did carotid test and partial CT which both came back negative. He said I had TMJ, went to dentist then neurologist, who ordered MRI and there you go, I have one!
Last year, I had a bladder infection, I had no painful urination and no fever, so nobody could figure it out for three months, but it was STILL a bladder infection.
Can't things change? Can't symptoms develop? I am now researching Gamma Knife!
Nank
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I developed this in my non-AN ear about 15 years post op from my AN resection, had all the tests and passed, no cause found it just is.....man was I worried it was AN in the functioning ear!
Sometimes I don't notide it but others I can't get to sleep because of it....irritating ain't it! (as it happens I sleep with my hearing ear in the pillow and had enjoyed very quiet sleep for a long time....now this instead)
Kathleen
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Some neurosurgeons believe that pulsatile tinnitus is caused by the AN pressing against a blood vessel in the crowded internal auditory canal. The pulsatile tinnitus might go away over time, possibly returning for brief episodes over the years; this has certainly been the case with me.
Possibly coincidentally (but I think not), my pulsatile tinnitus decreased and then went away as my tumor shrank post-CK.
Best wishes,
TW
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I think I was experiencing this last night--I had laid down in bed and my right ear had that muted kind of thumping. My ear felt very odd for several minutes--stopped up, thumping. It was distressing because I haven't had this symptom to this extent. I've had short moments of it now and then, but last night it went on for what seemed like 5 minutes or so.
I'm worried that my ear/hearing may be becoming more affected. :(
I had hoped to work out going to Barrow for CK, but that plan seems to be no longer an option.
Tomorrow I'm seeing the radiosurgeon (or whatever you call him) that's on the team I started with here locally to see about FSR as my ENT had originally suggested.
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Please, tell me what you think, need your help!
The first day I noticed the rining (pulsatile) in my right ear was almost nine months ago after a long flight (more than 12 hrs in total), after two moths I went to a general doctor that prescribed me something with Ginko to improve my circulation and told me to go to an ENT if there was no improvement. So I did. ENT diagnosed with barotrauma, prescribed steroids (took it for almost two months) but did not help much; also referred me with an audioneurologist (did a hearing test that resulted normal and suggested an MRI because I mentioned that I had head pressure to my right side (one time). There was a brief time that I thought my tinnitus went away but it came back within days.
I came across with this paper: http://stroke.ahajournals.org/content/18/1/252.long (it's old, and all the participants from the study are older than me and I could not find what triggered tinnitus in them)
I am positive I have pulsatile tinnitus, I was not tested to know if it was objective or not, ENT nor audioneurologist did not seem to inquire much about it. Probably because is rare, and in my opinion I consider myself too young (24) to have carotid circulation problems, heart problems, or hearing problems; but I guess you never know. Can AN be caused by a barotrauma?
I have not done the MRI yet, but I plan to schedule it soon; and it will be good to know more, so I can go back with my ENT or audioneurologist to share this concern or just to look second and third opinions, because they never told me about it. I mean they told me that the ringing could be a sign of early hearing loss but was discarded after the normal hearing test that I had. I read about other cases where they were fine and the next day not; I don't want to loss my hearing! :s
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I'm glad to read you will schedule your MRI soon. I think this is your best next step.
I'm sorry to read about your pulsatile tinnitus. I still have mine but a year later, I have gotten far more used to it, annoying as it is.
Your MRI should give you more answers. I sincerely wish you the best!