Aa
Helicopter noises in ear
Does anyone know what causes this? I thought pre op it was from csf restriction but post op? It's been doing this again in my left ear for several months. Is it CCI? So confused....
Thank you for any input!
Thank you for any input!
Your certainly right Selma- it is hard to collect. I thought, by how much it would run, it'd be an easy thing. I kept that cup next to me, in my purse, within hands reach all of the time- yet when it happened, I'd push it up against my nose and it'd get caught (fluid) on/in the rim, in the grooves, etc. I caught what I thought would be enough to test, but I also vowed to have nothing more w/my (ex) NS. At that appt., he said that tinnitus, my left side tremors, nausea, vertigo, worsening vision back of head zaps, etc- that NONE of those sx had ANYTHING to do w/ Chiari. Especially the tinnitus "tinnitus is not a Chiari symptom". Wow. Like I said, he back flipped from every visit I'd ever had w/him to that last one.
Anyways, I'll try that dripping it into the Kleenex and see if it's s bullseye. Would that mean it's like dark on the outside and whitish on the inside (dark circle from fluid and lighter in the center or vice versa?) I'll def. give that a whirl next time. I can't help but wonder if, as my CT's keep finding the consistent "finding" as "collected fluids consistent of a CSF leak". (My NS said that a leak is not subtle, that is see a huge undeniable "lump" (but there also IS a huge undeniable "mound"= brick. That said, I don't put that much stock in my NS, thus, my ex-NS). He said a CSF leak would be "not subtle". Yet, from other people's experiences, that is not so (that it's a big "lump" that appears and is SO clear like some sudden blister or something. Again, I do believe he was just "done" and said anything - even if he had to tell me the sky was orange. From this experience, I couldn't stress to anybody more, as you so heavily do, Selma, of the importance of being with a true Chiari specialist. I think my NS didn't have the answers in the end, didn't know how to manage Chiari itself, so he wanted "out". Unfortunately, he couldn't just be honest w/me & point me in the right direction.
Blah. Sorry for my ex-NS ridiculousness again.
I'll hopefully find sone valuable leads w/my awesome NL soon. Until then, I'll try to catch my drip on the Kleenex.
;)
Kerri, we could have a Kleenex Clue game going on ;) !
~emme~
Anyways, I'll try that dripping it into the Kleenex and see if it's s bullseye. Would that mean it's like dark on the outside and whitish on the inside (dark circle from fluid and lighter in the center or vice versa?) I'll def. give that a whirl next time. I can't help but wonder if, as my CT's keep finding the consistent "finding" as "collected fluids consistent of a CSF leak". (My NS said that a leak is not subtle, that is see a huge undeniable "lump" (but there also IS a huge undeniable "mound"= brick. That said, I don't put that much stock in my NS, thus, my ex-NS). He said a CSF leak would be "not subtle". Yet, from other people's experiences, that is not so (that it's a big "lump" that appears and is SO clear like some sudden blister or something. Again, I do believe he was just "done" and said anything - even if he had to tell me the sky was orange. From this experience, I couldn't stress to anybody more, as you so heavily do, Selma, of the importance of being with a true Chiari specialist. I think my NS didn't have the answers in the end, didn't know how to manage Chiari itself, so he wanted "out". Unfortunately, he couldn't just be honest w/me & point me in the right direction.
Blah. Sorry for my ex-NS ridiculousness again.
I'll hopefully find sone valuable leads w/my awesome NL soon. Until then, I'll try to catch my drip on the Kleenex.
;)
Kerri, we could have a Kleenex Clue game going on ;) !
~emme~
COMMUNITY LEADER
Hi ALL with any fluids be it from the ear or nose it is not always easy to collect it in the containers given....I know as I was asked to do it....
But there is an easier way to determine if it is in fact CSF fluid....allow it to drip onto a tissue and wait for it to dry...if a bulls eye pattern develops it is CSF fluid.
It is possible to develop leaks for no reasons and if that is possible having surgery in this area certainly can give us a higher percent rate of it actually happening to us.
Do keep everyone here updated on what is found out.
hi emme! Well I know initially I had a small csf leak and there was fluid tracking along the incision and in the surgical bed but was told to stay flat to which I did. My body thankfully absorbed it and as far as I knew it's resolved. I feel so much pressure back again in the back and top of my head and this thumping just keeps getting worse. Strangely, I stuff a tissue in my nose too. Kinda gross..... And same here, no cold or allergies. My left side was always my weaker side but I do have some issues with the right also. Tremors are bilateral and both legs are affected. Balance hasn't improved at all with surgery yet either. I remember thinking the journey part was over with surgery but I'm finding that the road keeps getting longer and longer!
Kerri...I'm wondering, with the fluid that drains from your nose (same side of the helicopter noise, eye- everything for me- the numbness, tinnitus, tremors, always on left side), but at my last NS(ex NS) appt., I mentioned to him that I have random...gushes (not full blast, but like a faucet, it'll just atart going) of what seems to be water from my left nostril. I hadn't really thought about it. It's not a "runny nose", no allergy, sinus issues/anything like that. It's literally like water. So bad that at times, I'd just keep the tissue stuffed up nose. He said that sometimes, but he said that w/my surgery it didn't happen, but that the mastoi can bs one affected. He was already "checked out" on me, but he gave the nurse a cup (like a specimen/urine cup) and she said I needed to collect the fluid next time- so that it could be tested, to determine if it was Spinal Fluid- as, according to him "everything is so close there, in surgery, that it's not impossible", as it sounded to him like it "COULD" be the sx of a CSF leak.
Just a thought ..maybe you could collect the fluid in a sterile cup and have it tested?
(I did collect it..but neglected to bring it in as I refused to work with him, yes, perhaps stupidly stubborn, for one moment longer. I know, kinda dumb, but in my mind, the things he was now saying contradicted the very simple things I DO know about Chiari,the "Chuari 101 basics" even. As well, he was contradicting what he'd said throughout this journey. He back flipped. Basically, he was writing me off & I didn't want to be in his care for one more second.)
But that might be worth a shot?
Just a thought ..maybe you could collect the fluid in a sterile cup and have it tested?
(I did collect it..but neglected to bring it in as I refused to work with him, yes, perhaps stupidly stubborn, for one moment longer. I know, kinda dumb, but in my mind, the things he was now saying contradicted the very simple things I DO know about Chiari,the "Chuari 101 basics" even. As well, he was contradicting what he'd said throughout this journey. He back flipped. Basically, he was writing me off & I didn't want to be in his care for one more second.)
But that might be worth a shot?
hi lottida! I'm really unsure what if anything helps with this. I really wish I did. It's really bothersome because it happens randomly from head movement or from changing positions. It will be a helicopter sound and then a strange whooshing. I've also noticed that when my heart rate goes up I get fluid that drains from my left nostril. Same side as the noises in my ear. You had decompression already too so do you think it's an after-effect some of us go through? I'm only almost 7 months post op and really confused
Hi this is sooo weird. I haven't been on this site for a while, but I have been having this hellicopter sound in my right ear for the last few days. Some times it sounds like a pulsating wind blowing in my ear. I decided to come on the site to question about it & saw this thread. I haven't had this since my last surgery which was 8 months ago. It is quite frustrating & also causes pressure to the right side of my head. I've basically been in bed for 3 days due to the whooziness. Is there anything that helps this?? or is this just another thing that us Chiarians have to deal with?? Appreciate anyone who takes time to comment......
optho appointment was Friday and aside from needing glasses he said my eyes were healthy. I'm confused as to why I see the halos and streaks of light and have blind spots like migraines that happen off and on all day. He said maybe the glasses would help that. I disagree. I know many people that need glasses and don't suffer with these symptoms. Still searching for some answers!
Hey emme! No, I had a leak develop within hours of the LP. I endured it for 7 straight days not knowing what was wrong. I was a bit nieve back then. But I've lived and learned since! I've had this darn tinnitus in my ears for every bit of 15 years. That has never went away, ifs with me constantly. But the helicopter thumping around dissipated for about 4 months after surgery. It's back to join the party again, unfortunately. Sometimes between that and the extremely bad visual disturbances, I think it's enough to drive me mad! I'm hoping I get some sort of answer/advise. I would really love to just be somewhat human again!
1 Comments
Ah, they caught mine the next day- I ended up back in the ER for a bloodpatch & ended up staying for a couple days.
To feel human again...that certainly would be nice, eh?
It's bound to happen though, right?
Mad respect to you for having tinnitus for so long! I'll always look fondly upon the little break I got from it after surgery...ahhh... The good ol' days.
I'm excited for possible answers for you!!!
To feel human again...that certainly would be nice, eh?
It's bound to happen though, right?
Mad respect to you for having tinnitus for so long! I'll always look fondly upon the little break I got from it after surgery...ahhh... The good ol' days.
I'm excited for possible answers for you!!!
I called my ophthalmologist and have an appointment this Friday to get checked. He's not a neuro but maybe he can help in some way. It's just gone on way too long and isn't getting any better
It seems that no one besides me takes the vision issues very seriously. I've told many Drs about it and I usually don't get any answers as to what is causing them. Also with the heartbeat in my left ear. Just been told it's not chiari. I've had a lumbar puncture done about 15 years ago when I first became symptomatic as part of MS work up. I ended up with a leak from that procedure and has to be hospitalized 7 days later for a blood patch. This just never seems to end! How are you feeling? You're surgery still on?
1 Comments
Same here after a lumbar puncture! But, just 3days. The doctor who who was going to be doing the LP kept assuring me that it would be a quick and relatively painless process...."one stick that will burn, I stick that will cause pressure -and then we're done"
No. He tried 3x's & couldn't get it. I had more than a few Dr's in the room after the 2nd try.., they ended up sending me down to fluoroscopy to get it done. And I most certainly stayed verrrry still... It wasn't for lack of me moving that he couldn't get it. So, I count (in MY mind) that LP as 4.
Vision changes are NOT treated as more than an "eh", met with a shrug of the shoulders. Like I'm silly & just need new glasses. But man, my vision has changed dramatically- for the worse- slain was the surgery.
The tinnitus's return in Dec. 26th was the most disheartening thing. I don't get any heartbeat/ helicopter ...only fluctuation of sound is either hiiiiiigh pitch "eeeeeeeee" or jet 747 "raaaaaaaaa".
Horrible thing tinnitus.
My neck -at base of skull has suddenly become kinda swollen over the weekend- in one area, kind of at base of skull, where soft tissue starts-same side as "brick". Lots of pressure feeling there now. Shockingly noticeable.
But that's a whole diff. topic.
So you see ophthalmologist this week ? I'll be back at ENT this week for yet another evaluation.
I'm anxious to hear what your ophthalmologist may be able to provide insight to!!! Keep us posted.
(You're right..it seems to never end!)
No. He tried 3x's & couldn't get it. I had more than a few Dr's in the room after the 2nd try.., they ended up sending me down to fluoroscopy to get it done. And I most certainly stayed verrrry still... It wasn't for lack of me moving that he couldn't get it. So, I count (in MY mind) that LP as 4.
Vision changes are NOT treated as more than an "eh", met with a shrug of the shoulders. Like I'm silly & just need new glasses. But man, my vision has changed dramatically- for the worse- slain was the surgery.
The tinnitus's return in Dec. 26th was the most disheartening thing. I don't get any heartbeat/ helicopter ...only fluctuation of sound is either hiiiiiigh pitch "eeeeeeeee" or jet 747 "raaaaaaaaa".
Horrible thing tinnitus.
My neck -at base of skull has suddenly become kinda swollen over the weekend- in one area, kind of at base of skull, where soft tissue starts-same side as "brick". Lots of pressure feeling there now. Shockingly noticeable.
But that's a whole diff. topic.
So you see ophthalmologist this week ? I'll be back at ENT this week for yet another evaluation.
I'm anxious to hear what your ophthalmologist may be able to provide insight to!!! Keep us posted.
(You're right..it seems to never end!)
thank you for your reply. I have had the "heartbeat" in my ear for quite a while and when I would mention it to the docs they would just look at me like I was silly. More recently has this helicopter sound taken place. You described it quite well! It really sounds like a distant helicopter and it's very bothersome! Does it still bother you? I know you've had a lot going on and didn't know if at least that annoyance has left yet!
1 Comments
it does bother me a little -- it can be loud when my heart rate is fast. If you think this might be your problem PLEASE take any vision changes very, very seriously! That is the biggest worry with intercranial hypertension. Have you ever had a lumbar puncture? The heart beat in my ears went away after my first one (before shunts) for a few hours.... along with my headache and nausea, because they drained some fluid and my pressure was lowered. It was crazy! but is an excellent gauge to treat possible pressure issues.
This sounds like the tinnitus I have from intercranial hypertension -- it's called pulsatile tinnitus and it's a whooshing noise in sync with your pulse. Mine sounds like a badly unbalanced ceiling fan, and goes away completely with lower pressure. Now it's one of my red flags for a shunt malfunction.
COMMUNITY LEADER
Please let us know what you do find out as I know this has been asked b4 and I am curious as to what it may be.
hi selma!
I don't think it's tinnitus because I have that nonstop 24/7. That never went away after surgery. This seems to come in spurts when I bend my neck say from ear to shoulder or bend my head forward or backward. Also accompanied by dizziness. I'm just perplexed and forgot to ask the NS about it. But I will bring it up at the next appointment.
Thank you for your answer!
I don't think it's tinnitus because I have that nonstop 24/7. That never went away after surgery. This seems to come in spurts when I bend my neck say from ear to shoulder or bend my head forward or backward. Also accompanied by dizziness. I'm just perplexed and forgot to ask the NS about it. But I will bring it up at the next appointment.
Thank you for your answer!
COMMUNITY LEADER
Hmmm are you sure it is not tinnitus?
I would get all sorts of sounds some are high pitched and others were more like you said a helicopter....
Not sure about CCI as I was told I had it but have not experienced the sounds for some time now.....
Maybe it is the sound of healing?...as there is more room for fluids to flow ....it just may be something to get accustomed to?
Many have described a crackling sound too and some Drs have suggested that was CSF flowing....so that is where I am getting my idea from.
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