I have lots of questions....glad I found you

[onecennt]

Hi,
  Several years ago I was diagnosed with a Schwannoma in one of my ears.  I was told by surgeon that it was too small to be operated on.....he sent me home and I forgot about it.  Then almost a month ago I came down with Sinusitis/Bronchitis/Double ear infection.  Everything got better except for the hearing in my left ear.  Primary care Dr. sent me to an ENT last Tuesday to check and see why it was still infected, I was having the feeling of fullness behind the left ear and my hearing wasn't up to par plus a lot of Tinnitus . After having a pressure test which was normal,  they tested my hearing which showed "significant" hearing loss in my left ear.  The Dr. went on to say he wanted to have an MRI done to rule out an AN.  We're now just waiting on my Kidney Doctor to get back in town so he can OK it and order the meds I will need when I do get the MRI.  (I'm Stage 3 in Chronic Kidney Disease)
   Since I've been home and found this site I've read a lot of the posts, still going to keep at them, and am learning a lot.  Of course when I was at the Dr I didn't know that a Schwannoma was an AN....I am correct in that thinking aren't I that they are the same thing? So I didn't mention it.  I did call an tell them about it and they are getting the information from the Doctors I saw then. So we'll at least have a baseline to go by. 
    I've got 2 children and 3 grandchildren with Neurofibromatosis 1.  I've never been formally diagnosed with NF, but was told by the Children's neurologist that I was probably the one that had passed it on since both children had it.  Wondering now if NF has some role to play in this?
     Right now I guess I'm in the learning mode, wanting to find out all I can so I can make a "educated decision" on what to do if necessary.  I'm just glad I found a Doctor that knows about AN.  Thanks for listening to my rambling.......

Penny

[CHD63]

Hi Penny and welcome to this forum .....

Yes, a vestibular schwannoma and an acoustic neuroma are one and the same thing.  The vestibular nerve is a branch off the acoustic nerve. The growing tumor is a result of the outer covering of the vestibular nerve, made up of Schwan cells, beginning to grow abnormally ..... hence the name, vestibular schwannoma.  If I remember correctly, the first discovery of this tumor was known to be growing in the internal auditory canal and originally thought to be growing on the auditory (acoustic) nerve (which it is, albeit a branch of it), hence the name, acoustic neuroma.  Well, that is about clear as mud .....  ..... hope it makes some sense anyway.

Keep us up to date on how things are going for you.

Clarice

[Suu]

Penny - All I can say is that we're here for you.  What a load on your shoulders. Please offload onto us and know that we understand everything that you're going through.

You're on the right track by following it up with your doctors and I will follow your posts as you let us know more.

Good luck!

Suu xx

[leapyrtwins]

Hi, Penny and welcome to the Forum 

I'm glad you found us.

Jan

[onecennt]

Well I finally have my Appointment for the MRI....not as soon as I would like, but at least I finally have  a date, October 12, I could have gotten it done earlier IF I went to a hospital but the cost would be higher.

  I've been reading the posts, I'm into the archives now, and am learning a lot.  I have to say the more time that passes the more nervous I'm becoming.  I'm normally an optimist so this is really throwing me for a loop.  I remember now that the AN I was dx'd with in 2005 is in my right ear, not the left that I'm having problems with, so we'll see if the right side AN has grown any more and IF I do have one on the left.  I'm  not having problems on the right except for Trigeminal Neuralgia which is pretty bad right now......thinking stress has something to do with this.  Unfortunately  Facial paralysis is something I'm fairly used to, I had Bells Palsy almost 20 years ago and have not recovered 100% of the facial movement and have a lot of cross healing of the nerves so I make Funny faces quite often, lol, (this is on the side I'm having symptoms on.)

One thing I know is that I will be referred to a Dr. Michael Fritsch, an ENT/Neurotologist in Indianapolis when the results come in from the MRI.  I've been told that much so far.....kind of like putting the horse in front of the cart, but at least I can research him before I go. 

Well, that's all I know so far.  Hopefully by the 15th I'll know more!  Just wanted to let you know the progress or lack of progress that I'm getting so far.

Thanks for listening.

Penny

[CHD63]

Hi Penny .....

So glad you have an appointment for your MRI.  The results will give you the information you need to proceed to a treatment decision.

Since your case has some unusual components to it, I would advise you to send a copy of your MRI CD to House Ear Clinic in Los Angeles for a second opinion ..... even if you have no intention of going out there.  They will give you a free consultation with no obligation ..... and they are extremely experienced in the treatment of acoustic neuromas.  Many of us did just that and are so glad we did!

See:  http://www.houseearclinic.com/consultation/acousticneuroma

Many thoughts and prayers.  Be sure to let us know what you find out!

Clarice

[onecennt]

Thanks Clarice, I'll keep that in mind!

Thanks
Penny

[geexploitation]

Hi Penny, good luck with your MRI and diagnosis. If you're local to Indianapolis, we are relative neighbors, so feel free to get in touch about this stuff. Depending on what the diagnosis is, some of my experiences might prove relevant while you're seeking out treatment/doctors.

Sean