What kind of ear trouble have you had with Chiari?

Question

I know Chiari can cause trouble with the ears, but if those of us could list some personal experiences concerning Chiari and their ears, it would be appreciated.  

My ENT says my trouble is "not" my ears, he thinks it's my Chiari and my Chiari specialists thinks my ear trouble is related entirely to my ears, and not my Chiari.  Hmmm

What kind of trouble have you had with your ears?

Kristel

bunniLife · Answer

im now 20 and i just learned about this last night. i looked at the symptoms and was like wow... i have all of thoughs the problem is az docs said i was normal and thought i was crazy. so they did a surgery that would shut me up ( galbladder) and that didnt help much with my constant nausea! so anyone know any well specialists in mississippi? ive had the headachs for years ( i think since i had my first head injury at 10, 11 or 12 or since 2012) i would like a really good one that knows what they are doing. because im tired of this 24/7 it gets in the way of my life.

selmaS · Answer

Hi and welcome to the Chiari forum.

 It is not how long it is that determines if u r a surgical candidate, but how it is affecting u with symptoms and ur overall health.

 A CSF obstruction is more of a concern the the length....as that will cause u to have more symptoms and health issues.

 U will want to get a CINE MRI to see if u have a blockage of ur spinal fluid, and other MRI's to look for other issues like disks that bulge, syringomyelia which can occur in ne area of the spine, tethered cord. Then other testing to rule out related conditions ICP, POTS,sleep apnea,ehlers-danlos, overcrowding.,.....

 The key is to locate a well experienced Chiari specialist....not ALL Drs that do this surgery do research and are true specialists and this is one condition u want the best Dr that will rule out related conditions as they can affect how u feel and heal post op.

 Know u r not alone <3

Noenoe3404 · Answer

My ringing has gotten louder and i am scared :( im only 17 and my ears can balance out pressure so when i go on planes my ear bleeds :/ my ent said i have chiari but 5mm how far should it be to consider surgery??

soulmeetsbody · Answer

Oh, and I can hear my heart beat all the time (especially in my right ear-most of my problems are worse on the right) and often get the piercing tinnitus ringing. The pressure in my head feels like going up a mountain, and I can feel my heartbeat in the back of my head (and my whole body if I do anything slightly athletic).

soulmeetsbody · Answer

Cold and windy always makes my ear hurt and radiate into my jaw (as does cold water in the pool). It goes away after I warm up. I haven't heard clearly for a long time. My ears always look perfect though. I've not been to an ENT as I just thought I had poor hearing. My chiari was diagnosed last June, and things got better, so I didn't keep seeking answers. Now I am pregnant and my symptoms are back big time. Hearing and balance issues are very bad at the moment...

selmaS · Answer

Yes, I would get awful pains not just as it was cold but windy...it would affect my ears and then spread from there...I use to avoid going to the St Paddys Day parade as it si always cold and windy then,...

 I would get jaw pain...but not my teeth .....

lmaquilon · Answer

My ears hurt horribly when it's cold outside...pain shoots through my head, feels like someone punched me in the side of my head. It will cause my jaw nd teeth to hurt. Anyone lose ever have this happen?

selmaS · Answer

Hi and welcome to the Chiari forum..

 I am so sorry u have such a scare and it took so long to get a DX...seems we all have this problem too.

 Did u have surgery? Did u have a syrinx as well?...what about other related conditions?

bwoodard · Answer

I get hot stabbing pain in my ears it started out just when i layed on them but now i get it during the day. I i jured my neck which sent my chiari i to over drive and it started shutting down my nervous system. Unfortunately being it was work related it took 5 yrs to get to a specialist and now my symptoms are permanent. The numbness in my hands the neck spasms all of it will never stop for me. I also found out i was pregnant after i got hurt and thought maybe that was why my ears acted up but upon further research realise it is my chiari. I get the pain that feels like a bunch of hot needls are being stabbed in my ear both on the inside as well as the lobe get this feeling. But lucky me my right side is worse and i think that is because i can no longer sleep on my left side due to my injury so more pressure is put on my right side. But im not sure. Glad i saw the specialist he said if i hadnt i wouldve been dead within a year and a half. I wouldve went to sleep and not woke up because it wouldve paralized me from the inside out. Very scary

selmaS · Answer

I said the same thing many times...it felt like a vise...not that I ever did it b4 either...lol...and I also went to the Dr thinking I also had a wax build up...and was told I did not!

 I was also told to get a mouth piece for when I sleep...I did not...I am a mouth breather and that would obstruct my breathing in my opinion.

  "selma"

Roy902 · Answer

I like to compare it to this:  It must be like having your head in a "VISE"  not that I have ever done so -  LOL.  

I one time had the thought of taking a drill that I was using and just drill it a little bit to relieve the pressure only...  I am not suicidial by anyone reading this.  The pressures are just that bad some times.  I went and had my ears checked to be cleaned as I thought that they had to be full of wax.  My ear was clean as a whistle - she said that she wanted
me to go to dental and get a mouth piece for when I sleep.  

That is the problem is what I was told; so I did this and it does not help at all.  I know it is chiari related as we all here at this forum very well suspect.  I am not a doctor - I am just a "average joe."  Dealing with chiari & yet to have surgery.

*Stormy* · Answer

I've had something like it....

Earlier on in my symptoms (pre-op) I was lying in bed like that and all of a sudden I felt this horrible burning in my ear and then it started to ring REALLY loudly. After that point, though it got softer, my ears never really stopped ringing.

Stormy

kricklekrin · Answer

A really strange thing happened last night, so I'm thinking my ear trouble is Chiari related.  I had my head in a sort of strange position while lying in bed watching a movie (being lazy).  When I went to reposition my head, this strange feeling up through my neck to my right ear occurred and then my entire right ear muffled and this loud piercing noise persisted until I fell asleep.  It was horrible.  It was actually uncomfortable to reposition my head when this happened.  A little alarming.  And, then I was terrified I wasn't going to wake up with any hearing in that ear, but this morning it's a lot better.  

Has this ever happened to anyone else?

Kristel

selmaS · Answer

My ear issues were actually better post op, but the further I am from my surgery date the worse it has been getting again.

 I also wonder if it is a related chiari issue....new issues like the swelling of my legs and feet....could be a POTS symptom and I wonder if the increase in ear pressure  is as well.

PipelayerAndy · Answer

Pressure is my big one,  the ringing or dive bomb sounds, also sometimes not sure if i heard something or not.

*Stormy* · Answer

That's interesting, I would totally agree with what your NS said. That was the first thing I noticed post op was that the visual and auditory symptoms hadn't improved much and actually the ringing in the ears was worse for awhile. I still find for the most part that those symptoms have stayed more or less the same and I am over a year post op.

niki3350 · Answer

Oh yes the ears drive me mad.  I describe mine as if im on a plane with the ear pop/pressure but it feels like im having to listen to people as if I am underwater, the sound is very muffled and usually problamatic in my left ear, it comes and goes all the time and drives me insane when it does, Im always wanting to put my finger in them to make them pop back to normal, but it never works.

Hey the joys of Chiari....... 

Niki x x x

Stephiec79 · Answer

HI- 
Oh, the ears!!! UGH! I also get the pressure like my inner ears are just going to push through to the outside...like being on an airplane. Pressure changes are awful! I also get the "heart beat" pulsing sound in my ears and the "out of body" feeling like I'm blocked and I feel like I'm hearing things out side of my body. Weird. I told my NS about it, and he actually understood completely. He said that symptom is one of the number one symptoms that his chiari patients complain about.

Selma- my NS also said that after surgery my balance issues will be improved and my headaches will be improved, but a study that one of the NS's performed on post-op chiari patients showed that the hearing & visual symptoms associated with chiari aren't 100% relieved with the surgery. They don't understand why, but he did forewarn me that although I would get relief from the other symptoms, I would probably have the ear & eye issues after surgery. Hmmmm. Interesting, huh? I really like my NS!

*Stormy* · Answer

My issues are A LOT like Selma's too...

I get the awful pressure feeling in my ears too, sometimes it feels like I go for days with my ears plugged! Along with that feeling I get this throbbing feeling in my head and sort of a whoosing sound in my ears that pulses with my heart beat. I also get the ringing but mainly just a white noise all the time. I have trouble hearing things when there is a back ground noise or if it's a low volume. Sometimes something that is really quiet (like a chip bag crackling) will come out sounding WAY louder than it should. I also get popping and crackling noises in my ear here and there. One of the cerebellar functions is to process some of what we hear (I didn't know that till recently) so that definitely looks like it is another by product of Chiari.

Stormy

kricklekrin · Answer

WOW - sounds familiar, maybe it is the Chiari.  My symptoms crop up from time to time as well, this leads me to believe it is the Chiari.  Out of the blue today it felt like someone jabbed something in my ear, painful.  

Thank you - pray your feeling well these days.

Kristel

selmaS · Answer

Hi Kristel,

 Well from buzzing and ringing to extremely sharp pain that feels like an ice pick being jabbed into my ear....at times a fullness like I was on a plane or going up a Mt.....u know the blocked feeling u get, but u can not unblock it and  the pressure builds.

Much of the ringing  and buzzing can be the NSAIDS we take for pain....but this other pain, I have no idea, I had my surgery and still have it...not as bad as b4, like all my symptoms they crop up from time to time.


  "selma"