Laura's 7/11 appointment

[lholl36233]

I arrived at 10:45 for an 11:00 appointment.  Dr. Moser was running behind.
It was 12:30 before I saw him.  At that point, he acknowledged he received
the MRI and CT from Boston.  Dr. Moser knew he had looked at them but since
it wasn't recent, he didn't remember the details.  He didn't have the CD
with this information.  He left for another 20 minutes in an unsuccessful
attempt to locate it.

He wants me to call Boston to have another copy sent but only if they'll do
it without charge.  If they want to charge for it, he said I should call his office
to let them deal with it.

Once Dr. Moser reviews the MRI and CT again, he is going to call me to save
me a trip to the office.

Since I felt my hearing was better while I was on the prednisone, he gave
me another presciption.  If I feel again my hearing has improved, Dr. Moser
wants me to call his office and he'll setup an appointment with the
audiologist for more hearing tests.  Dr. Moser is a surgeon, not an ear,
nose and throat doctor like Dr. Lee who I saw 5/23.  I think Dr. Lee should
have sent me for more hearing tests on that day when I told him I thought
my hearing was better because of the prednisone.

It was a frustrating day.   

[lholl36233]

I received this in the mail 1.from Mass Eye and Ear.

CT:  Expansile primarily lytic lesion with mixed mineralization extending into the IAC or Alternatively causing upward displacement of the floor of the Internal Auditory Canal resulting in moderate to severe narrowing.  This appearance is most consistent with a benign vascular lesion such as an ossifying hemangioma.

MRI:  There is a T1/T2 heterogeneously hyperintense lesion that does demonstrate contract enhancement within the left petroux apex measuring 1.4x1.3x1.3 cm resulting in upward, expansile deviation of the IAC significantly narrowing the canal but not completely occluding it.  Thiere is no significant edema surrounding the bone.  The remaining temporal bone structures appear unremarkable.  There is no association of this mass with adjacent vessels.

There are multiple subcortial and deep white matter hypertensities including a single focus within the genu of the corpus collosum which are very prominent give the patien'ts age.  The ventricles are normal in size.  The orbits are unremarkable.  The visualized paranasal sinsuses are clear.  The flow voids are normal.

Can anyone help me translate?   

[Joef]

(I removed the duplicate posting)

I in my "MRI's for dummies" translation ... they dont say AN .. but they do see something in the IAC (Auditory Canal). Small and not in adjacent vessels.. thats good news!

[lholl36233]

Thanks for the opinion joef.

I am calling the doctor this morning to see when he wants me to come in with the cd and radiology report so he can review it.  I didn't trust another copy to go directly to the office after the last time.

I'm under the impression the IAC is normal.  The mass is obstructing the canal but not completely. 

The good news is any reference to my right side was unremarkable which is my code for normal.   

[lholl36233]

Dr. Moser just called me.  He found the original CD from Boston.  He has
ruled out the AN the ENT assured me I had in May.  He called it a
bone lesion in the temporal bone.  Dr. Moser wants to talk to an expert on
the temporal bone before we do anything further.  I'll call back next
Friday if I don't hear from Dr. Moser by then.

I am also going to setup an audiologist appointment to see if there is any
change from 5/2.  I believe there will be improvement.  I'm encouraged.

Has this happened to anyone else?

[Saf]

Hi Laura,
I am new to this site and have read your messages with interest. After experiencing hearing loss, facial paralysis and vertigo for 11 years and multiple MRI and CT scans that were read as normal, I was diagnosed with an intraosseous hemangioma(1.4cm x1.5 cmx1.5 cm) that involves petrous apex of the temporal bone, cochlea and vestibule. Interestingly, I had this physician review all of the previous scans (I had at another Boston hospital )and he could see the lesion on all of these previous scans!
I have been on a few bursts of prednisone which have greatly helped my vertigo.
Hemangiomas of the temporal bone are extremely rare; I have not been successful locating a physician who is an expert in temporal bone lesions.
Good luck with your follow up- and if you learn who this temporal bone expert is- please share the name!

Take Care
Stacey

[lholl36233]

Hi Stacey,

Dr. Moser told me the temporal bone expert was Dr. Glaser.  Of course, I got that over the phone so Glaser could be spelled any number of ways.  I'm not even sure he is with the same hospital but Dr. Moser said Dr. Glaser has written books on the subject but is currently on vacation. 

I'll give it 2 weeks before I call Dr. Moser for an update.  I'll have more information on Dr. Glaser by then.  I expect a call Monday with an audiology appointment.

By no stretch do I feel like my troubles are over but I'm encouraged...

Laura

[lholl36233]

Two weeks to the day and here I am with an update.

I have an appointment with Dr. Richard Gacek on 8/22.  He is at UMASS in Worcester.  He is an ENT Dr. Moser calls a temporal bone expert.  If you google Dr. Gacek, you'll see he has written a book called Ear Surgery.

According to Dr. Moser's email, Dr. Gacek review my study from Boston and feels there is a reasonable operative solution.

I'll be back with an update 8/22...

[Debbi]

Laura-

We'll all be waiting. Meanwhile, many good thoughts for you!

Debbi

[lholl36233]

Thank you for the good thoughts Debbi.

I've followed your posts.  You are truly an inspiration.

I feel ,like everyone else here, it's important to share our experiences.

If it helps one person down the road, it will be worth it.

[lholl36233]

Hello,

I keep posting on this thread for the benefit of anyone who doesn't already have my backstory.

I went to the audiologist today.  On 5/1, I had moderate to severe hearing loss in the left ear.  Today, the left ear was normal.  On 5/1, speech discrimination was 78%.  Today, it was 100%. Before the tests, the audiologist expected the results to be the same from 5/1.  She was surprised.

Whether or not it will last or if it is the result of the last round of
prednisone remains to be seen.  Still, I am encouraged...

[lholl36233]

I saw Dr. Gacek today.  There isn't a name for what I have, like acoustic neuroma.  I basically have new bone putting pressure on the hearing nerve.  It made sense to Dr. Gacek the prednisone would help that.  He doesn't want to rush into surgery on this.  It wouldn't be a simple procedure much like the surgery so many of you have gone through. Even though it's not an AN, it is in the same area. There is no option for radiation because this isn't a tumor.  Dr. Gacek wants to see me in 6 months after I've had another MRI and CT to see if anything has changed.  As I posted, my hearing in the affected left ear is now normal.  If I feel in the future it is getting worse, Dr. Gacek said I should call audiology directly for a hearing test.

So, if nothing changes, this might be my last post for 6 months.  I will be checking the site often to monitor everyone's progress.  Good luck to everyone.

Laura

[sgerrard]

Hi Laura,

It sounds like you have a diagnosis and plan now, even if it doesn't have a name. Watch and wait sounds like a good first step, I guess.

I hope you will feel free to continue to participate in the forum as much as you like. There is no requirement that you have an AN, especially if you have something medical going on in your head near your ear. We'd be happy to have you.

Best wishes,

Steve

[lholl36233]

Thanks Steve,

I kind of felt like i didn't belong here anymore because I don't have an AN.

I will have surgery if Dr. Gacek recommends it. He is the expert.  I do think watch and wait is the best option for me at the moment since my hearing is normal. 

Can you imagine new bone forming at 35 years old? 

Laura

[sgerrard]

Laura,

There are several members who have meningiomas, Meniere's disease, or other "wonky head" diagnoses besides AN. Since you have several similar symptoms, you may find some useful things on the forum. Plus, if you do end up having the surgery, I suspect you will go through some of the same issues, since you would be having surgery in the same area.

A year ago I would have said "what, new bone forming your ear? how can that be?" Now I tend to say that nothing really surprises me anymore, this particular area of the head seems to have all sorts of odd things that can happen. Once passed 35, I am pretty sure that anything that starts growing is not a good thing.   

Take care,

Steve