ear pain

[sandy629]

  i had a real bad day friday, it started out with a slight migraine on the left side of my head, it got real bad during the night so i went to the er, they gave me the hospital cocktail and said there was nothing they could do, to go see an ent, well i called my ent who said it was otoscleriousis (that's not suppose to hurt )  well i got a young associate, he said that after the chiari surgery the nerves are damaged and can be blocked and cause alot of pain he called it nuero myalgia. now remember i was told i needed a stampidectomy, i had otoscleriousis, and noe this, well i am going for a cat scan thursday and we will finally find out, oh ya i was told i had tmj,   i have been getting the steriod shots in my lower back and with that i have been getting severe pressure in my head with migraines, my pcp told me that the shots were causing cranial pressure,   this is for you selma... the fluid comming out of my ear, i was told by the pain clinic was a spinal leak to have a nuerologist check it out, he said that  that is about the only thing that would cause ear fluid, and the lab at my pcp said the dr could test the fluid with a petry dish, now here comes the ent diagnosis, once again if i could fill a vile to get it tested that would be great, but he is willing to bet that it is excema  or fluid from tmj. well one good thing will come out of this is the ent is going to recomend a nuerologist that deals with this,  woo hoo !!!  i will keep you posted

[selmaS]

There is a way to test for CSF fluid without getting a vile....OMG....really...sigh...anyway all you need to do is get a drop onto a clean dry tissue and if you get a bullseye spot once it dries it is more than likely CSF.
Is the stampidectomy for ear pain or hearing loss?

As for the nerves being damaged during your PFD,  I have not heard of anyone having that happen, but I am sure it is possible....but without checking you, I am not sure why that was a suggestion given....??

I actually had a Dr suggest I had TMJ also....I do not....and it wasn't the issue.....

May I ask, how long ago was your surgery?

[jessie3052]

In regards to the chiropractor, do some research on upper cervical chiropractors and chiari malformation. I am seeing one in my area and he has been a godsend! He is who diagnosed me with this and his treatment has helped my condition. Unsure at this point if any further treatment will be needed but if so I know I am in good hands so he will communicate with me if and when that time comes.  Best wishes!

[sandy629]

  i have some herniated and torn disc.  they checked that.  they said my neck was ok.  thank you for the suggestion

[irislita]

Hi sandy...did u have ur cervical area checked lately?my doctors besides of chiari tell me that cervical pain can radiate to the ear up to ur temples.do u also feel pain coming from there?when the pain flares itin my case it definetly radiates from c2/c3....just a thought

[sandy629]

  when i first fell the dr at mass eye and ear said i fractured something in my ear and i needed a stapidectomy and then said he never said that, then in this ent office he said i had otoscleriosis, and then it went to tmj, i believe this ent just went with my orginal dr in this office . i believe that it is beeing ignored because i still have the lawsuit going. i had shown him i didn't have tmj  (from both my dentist)  this pain causes severe migraines and pain in my ear, i just can't believe that dr's will let someone stay in pain because they don't want to get involved. my case will be over in march and hopefully after 4yrs some one will cure the pain

[selmaS]

  The ENT is one Dr I did not go to, but my dentist did rule out TMJD for me....and I had the ear pain, it felt as though someone jabbing me with an ice pick....and I also had jaw pain....I would wake some days and it felt that I slept in a position that my jaw held my whole body up....which I know is not so....I also use to get this weird spasm when I would yawn in my throat/neck...

Most of that is all gone with my surgery...the fact it is neuro it is hard to track down it does not leave a trace....or tracks as to what it could be...Chiari is very sneaky.

[sandy629]

  i went to the ent and he had a  cat scan done. he had the jaw and neck done. i don't have tmj and my muscles in my neck are fine. i asked him if he did the  ear canal and he said no and when asked why he said i found no need. so now he recomends steriod shots. which i am not doing again.  i had the 8 on one side and on the other starting in my head down my neck, i had the 4 shot in my neck and i had one shot on both sides of my  head, they are good for the 2nd shot and the 3rd ones were very painfull.

[sandy629]

  i now wear glasses thanks to chiari, ya know i never put 2 n2 together i am going to ask the ear dr friday

[ceo83]

Thats its s crazy how we all had the same problem with tbe sunglasses. So i.went kut and got me pair of those Detective type one that are thin and more flexible. And bingo, the glasses were the trigger causing my headaches to flare up. That was N easy fix.... And athe time, I was also suffering from TN flare.

[sandy629]

  your right selma  "it doesn't work that way !"  the surgeon told me to fill a vile ( a huge one ) and i can't because it comes to the ear opening and then flows back down inside behind the ear. i can feel when it's comming and when it is draining.  i don't have flaky skin on or around my ear, it happens when i get up in the am or when i have done something strenous,  this ent is going to check to see if it's the ear or my nerves. the other dr told me i needed a stampidectomy  another told me excema, so i am praying this doc gets it right, he is the only one who did a cat scan, i have lost 60% of hearing in my left ear and 30 % in my right,

[irislita]

P.s. when pain gets unbearable does ur ear get hot???mine gets hot and red!!!any explanation?

[irislita]

Hi jen as said before this was my first impacting symptom.i ve had surgery,but i have to live with it every day.i went to several nl and nobody ever clearly could tell me what it is...hence no treatment till now...this is really insane.

[selmaS]

  Hi and welcome to the Chiari forum.

Too many of us r told we r not surgical candidates or that chiari is not the reason for our symptoms that we run in circles from Dr to Dr, we have dubbed this the Royal Chiari run around.

I too felt like my glasses were more like a vise on my head, but I had what felt more like an ice pick being jabbed into my ear....awful pain.....

I have also had it on the cartilage with the slightest touch could send me to the moon.....ouch

So many of us understand and until u get to a chiari specialist u may continue to have Drs that  do not have treatment ideas.

[lazycrazyjen]

Hello, I've never posted here before, but this thread made me take notice.
I was diagnosed in February and told that surgery probably isn't an option for me. Since then I've discovered one trigger to my headaches is wearing poorly fitting glasses, and that my ear starts to hurt if I wear them too long. So, I've gone to contacts every day. But, recently, I've had excruciating ear pain, nothing like an ear infection, but like severe muscle strain on the little bit of cartilage near my temple. It's made me cry, caused headaches and made me look insane while I'm trying to relieve the pain.

[sandy629]

  the ear dr did say that it cold be nerve damage from the chiari surgery he said that sometimes the nerves don't heal the right way and can get blocked, or just get damaged, i had my contrast cat scan today so hopefully he will have an answer for me next friday,  i will keep yo posted on his findings

[irislita]

I have the same every single day.it feels as if my ear is going to explode.stabbing pain.i also sometimes feel as if my ear has hearing loss and yes it feels wet aswell.till now nothing but...hey thats strange...something from the nervous system.great thats an answer that brings me further.

[selmaS]

  Ok...I did some research and know that this can be an issue from showering, swimming, or from the vagus nerve being affected as just one of the many examples I found....this in turn can cause jaw pain, which many of us have,.....I wonder if the nerves in the ear become inflamed as a result of Chiari and appear to be ear canal ezema when it is due in part from the way our nerves r being affected.

When these nerves in the canal get inflamed it can cause partial hearing loss, and fluid to pass from the ear.....also flaky skin, pain when touching the or pulling at the (they =called it some like ) triangular aspect?...sorry but I do recall having pain if I moved that one part of my ear.

U should have the Dr check ur vagus nerve, and look for swollen lymp nodes ect....

But I really think it is from the way the nerves r compressed it affects it like  nething else as too many chiarians have had this, neway that is MHO

[selmaS]

  Fluid from the ear?....how can that be? I am going to do some research on this, it does not sound right,,.,

[sandy629]

  well the lab  said they do it all the time, they take a swab and pt it in a petry dish and test it that way. but once again  it was called excema

[selmaS]

   I had fluid in my ears at one point and was given one of those conts they give u to pee in and said to collect some, I said it does not run like a faucet...there was no way for me to do that so it was never tested, but has stopped,. but I do not understand y they can not swab the dang ear and figure it out.....

Please keep us posted and I feel for u <3