Not diagnosed, but thanks in advance!

[sybil]

Hello. I have been "creeping" on this site for several days, and have finally decided to post. I have not been diagnosed as having an AN, but think it is a possibility and I have my first ENT appointment on Friday. Whatever my problem turns out to be, I wanted to take the opportunity to tell everyone here, "Thanks!". After reading so many of your posts I feel completely prepared for my appointment and believe that I am armed with all of the right questions to ask.

Just for some feedback, several years ago the hearing in my left ear started to fade in and out. My grandmother is deaf, so I just thought it was going to happen to me. Over time, it started to get worse and I have a ringing/buzzing in it quite frequently. It has even woken me from deep sleep.
 About a year ago, I started to have some numbness in my head (like someone is squeezing it), stabbing pain in my eyebrow, and occasionally when I blink, it seems that my eyelid doesn't want to open back up. I saw a doc about the numbness and he said I must have a pinched nerve somewhere. Over the last few months, changes have been happening....quickly! There is a pressure in my ear that is becoming almost constant. It sort of feels like there is something blocking my ear and there is someone in there trying to push their way out! I am also getting an occasional stabbing pain deep in my ear. It is very quick and then over.
I do sometimes feel light-headed, but I just thought maybe my vision was getting worse also. Yesterday, the left side of my face felt almost like it was burning, and my skin felt like it hurt. Yep, my skin! It was sore to the touch.

I had a thorough physical in early February. I told my doc about my ear and he said it looked fine. He also did a lot of bloodwork (11 tubes worth!) and it all looks good.

Anyway, sorry about the length of this. I am happy to hear any opinions and advice. I can't wait to finally put all of these symptoms together in one place and hopefully get it figured out! Who knows what they'll  find in my head; a bug, a missing sock, an acoustic neuroma, or maybe Jimmy Hoffa!
Thanks again!

[leapyrtwins]

Jimmy Hoffa    Sybil, I like your sense of humor 

Although there are worse things in life, I'm hopeful you don't have an AN.

The only way to tell for sure is with a diagnostic MRI - with gadolinium contrast is best.  I don't know if your ENT is going to prescribe one on Friday, but you may want to push for one.

Unfortunately ANs can go undiagnosed for years because the patient doesn't get sent for an MRI.

Best of luck.  Please let us know what your doc says.

Jan

[nteeman]

I agree with Jan especially the part about pushing for the MRI. If your doctor says lets watch and wait, tell him/her that you want the MRI now for your piece of mind.  The MRI is an non-invasive test that takes about 45 minutes.  At worst some people are uncomfortable taking them but most, myself included, find it a harmless easy medical test -- a bit noisy, but completely painless. Don't take no for an answer, tell the Doc you want an MRI and if they don't prescribe one for you let them know you will seek another doctor who will.

Good luck

Neal

[moe]

The MRI is an invasive test that takes about 45 minutes. 

We know what you meant to say, Neal! MRI is non invasive. Just sleep through it (I did).
Push push push for the MRI. He may want to do a audiogram also. Hope you don 't have an AN, but  you've definitely got something going on!

Glad we can be of help without even realizing it!
Maureen

[Jim Scott]

Sybil ~

I want to welcome you and I'll gladly join the chorus advising you to be resolute in asking your doctor to order an MRI with contrast.  As you've no doubt gathered by now, ANs can be problematic but are benign and treatable.  If you end up with an AN diagnosis (via the MRI), we'll be here to inform, advise and support you.  If the MRI shows nothing or something that is not an AN, we'll still be here and we'll still support you in whatever comes next.  Thanks for taking the time to read and now, to post in the AN forums.  We'll look for your next post and your MRI result.

Jim

[sybil]

Thanks to all of you for the warm wishes!

I had my appointment today, and I don't feel any better now than I did before. I had made a list of all of my symptoms that I thought would be significant, but the doctor didn't really let me get through them all.

I had my hearing and pressure tested. I do have some decreased hearing in that ear, but it is minimal. No remarks made about the pressure or any numbers given. When he looked in my ear, once again, I heard, "It looks fine". (no sign of Hoffa)

He is sending me for an MRI, but I have to wait for the office to call me to schedule it.

He said he believes it may be eustachian tube dysfunction and try decongestants. I do not have allergies or sinus infections. My symptoms started several years ago, and would eustachian tubes cause the other sensations in my head and face?

He also briefly mentioned MS, but didn't really think that was it either.

To sum it all up, he said we may never know what this is and I'll just have to live with it. ? Take ibuprofin for the discomfort. ? Oh, and MRI. Hmmmm.

[CHD63]

Hi Sybil .....

Welcome to this forum, even though I pray you do not have an AN.

I am so sorry you are being blown off by the ENT ..... your symptoms are real, no matter what their cause and it is his responsibility to get to the bottom of it while reassuring you along the way.  It sounds like he is not terribly enthusiastic about either.

IMO, I would not wait past next Tuesday to hear back on the scheduling of your MRI.  If you do not hear by Tuesday, call them again.  You know the old squeaky wheel thing.  Also, be sure it is ordered with contrast.  If it is not an AN, you still need to push for a definitive diagnosis ..... "just have to live with it" does not cut it for me!

Thoughts and prayers.  Let us know what you find out.

Clarice

[sybil]

Well, I have an MRI scheduled for Thursday, with and without contrast!   

Maybe I'll start to finally get some answers.  If this doesn't show anything, I plan to keep looking!

[CHD63]

Yeah!  Keep us posted on the results.

Thoughts and prayers.

Clarice

[Lizard]

Good please let us know what the MRI shows...its the only way to know for sure!
Good luck!
Liz

[ombrerose4]

Good luck on your MRI. We will all be thinking of you. Let us know how it goes and know everyone on this forum is here to help if you need it (hopefully you won't).

[sgerrard]

Hi Sybil,

I am glad to read that you have an MRI scheduled. That should resolve the question about whether you have an AN (or MS, for that matter). I also want to let you know that you are welcome to stay on the forum even if it is not an AN. We have a variety of misfits who are members even though they don't have an AN, so you will fit right in. Strange things happening in your head is really about the only criteria for membership. 

Steve

[Adrienne]

Glad you have an MRI.  Will definitely be good to clear this up and know what you are dealing with.  I tend to agree with you that your symptoms sound very 'AN' ish.  I had reduced hearing in one ear too, and although the doc could tell that I did on some frequencies-he said that overall I had excellent hearing.  Since that was my only symptom (that I knew about at the time), I'm lucky they sent me for further testing.

The pain in your eyebrow........is it electric shock like, that comes quickly and leaves quickly?  Just wondering if that's Trigeminal pain.  Mine was horrible, but was lower down on the side of my face/mouth on the AN side.

Best of luck.  Hope you get this figured out.

Adrienne

[sybil]

This is such a great group of people! Thank you all so much.

Adrienne, the electric shock description is actually a perfect way to describe it! I may use that description from now on. None of my pain/numbness/tingling is constant, it all comes and goes.

Over the past few days, I have developed an ache/pain in the back of my skull on my bad ear side. It is not directly behind my ear, but more towards the low-back-center of my head. I guess I will know soon enough now if there is anything there!

And Steve, there are definately strange things happening in my head. I don't need an MRI to tell me that!

[Adrienne]

Sybil,

When I was going through the Trigeminal pain, I was researching like crazy and found this online to help describe it.  It fit me to a 'T'.  It's actually a write up about Trigeminal Neuralgia (another disorder) but since both are caused by an irritation to the Trigeminal nerve, the outcome is the same:


The trigeminal nerve (also called the fifth cranial nerve) is one of the main nerves of the face. There is one on each side. It comes through the skull from the brain in front of the ear. It is called trigeminal as it splits into three main branches. Each branch divides into many smaller nerves.

The branches of the trigeminal nerve take sensations of touch and pain to the brain from your face, teeth and mouth. The trigeminal nerve also controls the muscles used in chewing, and the production of saliva and tears.

Neuralgia means pain coming from a nerve. In TN you have sudden pains that come from one or more branches of the trigeminal nerve. The pains are usually severe. The second and third branches are the most commonly affected. Therefore, the pain is usually around your cheek or jaw or both. The first branch is less commonly affected so pain over your forehead and around your eye is less common. TN usually affects one side of your face. Rarely, both sides are affected.

The pain is stabbing ("like electric shocks"), piercing, sharp, or knife like. It usually lasts a few seconds but can last up to two minutes. The pain can be so sudden and severe that you may jerk or grimace with pain. The time between each pain may be minutes, hours, or days. Sometimes several pains repeat in quick succession. After an attack of pain you may have a dull ache and tenderness over the affected area which soon eases. However, constant pain in the face is not usually a feature of TN.

You may have 'trigger points' on your face where touch or even a draught of air can trigger a pain. These are often around the nose and mouth. Because of these, some people do not wash or shave for fear of triggering a pain. Eating, talking, smoking, brushing teeth, or swallowing may also trigger a pain. Between attacks of pain, there are usually no other symptoms, the nerve works normally, and a doctor's examination would find no abnormality.