Newly Diagnosed - Reading/Philadelphia

[jmarkle]

Hello,

I am newly diagnosed with a  9.4 x 12.6 x 10 mm AN. I had my MRI done last week 5-Nov-2013 and requested my results on disc. Within a very short period of time I was able to see and roughly measure with the software they provided. At that point in time I began my research and I am very appreciative of the existence of ANA and this website. I have spent numerous hours on here and I am sure I will spend many more as I begin this journey.

On 7-Nov I received the official call from my ENT nurse, she just stated that I have benign tumor in my ear and that the Dr would like to see me to discuss the results. I have an appointment on Tuesday 12-Nov. On 8 Nov I received the official reading of the MRI from my family Dr. which states " 9.4 x 12.6 x 10 mm enhancing left acoustic schwannoma which abuts but does not deform the left cerebellopontine angle. Right internal auditory canal is normal."

My current symptoms are, Tinnitus, hearing loss in left ear, fullness in ear, pain at times in the ear. I am not certain of any balance issues but I am hoping to get some tests to do a baseline of where I am at today.

Symptoms began at least 2 years ago. I was having back issues, and decided to get an inversion table. About a day after using it, I realized I had completely lost hearing in my left ear. It was not long after that I got rid of that machine . Hearing loss lasted for a few weeks and eventually came back to a point where I could hear better, I believe I had the tinnitus also. Over several months the hearing would come and go. I eventually ended up at an ENT, this was Mid 2011. I received hearing test, and there was noticeable hearing loss in left ear, ENT mentioned that it could be a tumor but very unlikely and felt an MRI was not need. A few weeks ago I scheduled a follow up appointment as I felt, and my wife felt  my hearing was worsening. The hearing test confirmed the hearing loss was much worse. At this point the Dr. was not sure why this was happening but stated it was time for an MRI, and that it could be a tumor. And he was correct. 

At first I was a bit scared, the information on the net can be quite scary and overwhelming.  I am currently at a point of acceptance and feel very fortunate to have this forum available to me.

Thanks to all
John

[james e]

Your case sound just like my case...but no inversion table. You should have great access to doctors in Philadelphia. You can search the forum for questions to ask your doctors. We are here to support you.

James

[Nannybee]

Hi John,
My diagnosis was almost a year ago and I'm about 40 minutes from Reading. My insurance sent me to Hershey to see a neurotologist there, then I saw a doctor at U Penn. if your insurance allows, you may want to travel to Pittsburgh to UPMC where they have been doing gamma knife on AN's for many years.
After 3 consults I ended up having my treatment close to home at St. Luke's University Medical Center with Dr. Hugh Moulding.
Feel free to PM me if you have any questions.

[Echo]

Hello John and welcome!

You are doing the right thing in researching now and prepping for your Dr.'s appt.  There's a lot to learn and consider when you receive the news you have an AN.  It can be overwhelming, so take time with your research and know that there are many of us here who can help you through the process.  My AN was primarily within the CPA, lightly touching the brainstem but not indenting it, with the tail portion inside the IAC. 

Best of luck with your appointment.

Cathie

[jmarkle]

Thanks to all for your responses and encouraging words.

I met with my ENT this morning and he gave me the formal news. I will say that I felt I knew much more than he did about this condition, but to his credit I believe he said he only diagnoses about 1 every 2 years or so. Based on the knowledge I have gained I asked him about a VNG balance test and he ordered one for me. They did not have an appointment available until 3 weeks from now.
I suppose I should wait for those results prior to consulting with the AN docs. 
 
I am being referred to Dr Wilcox at Jefferson.  I am also in the process of getting another opinion from Dr Bigelow of U Penn.

I spent time today on the phone with my Insurance and unfortunately I do not have a lot of choices, looks like just Jefferson and  U Penn.

John

[Echo]

Hi John,

Just my opinion, but I would move ahead and line up your consults with the neurosurgeons you are wanting to see.  You have your MRI and a confirmed AN, so they will review the MRI, discuss your symptoms with you and offer treatment options, which you will want to take time and review.  The results of your balance testing can be passed along to your specialist at a later date. 

You mention in your first post that you were "not certain of any balance issues" so hopefully you are in good shape.  Do you find yourself wobbling or misstepping at all?  Kind of like trying to walk on a boat that's rocking?  What about walking at night, does the dark bother you at all?  These were all things that I noticed when I started to realize I had balance issues.  They were subtle in the beginning and then became more frequent and more pronounced.   

Take care,
Cathie.

[Gloria Nailor]

Welcome John, sorry for you to need ANA but glad you can find info and support you need, it is very helpful reading what others have been through.  But, it can be scary too, seeing what others have been through too.  I remember the shock and fear I experienced, your whole world changes. Hope we can help.

[jmarkle]

Cathy,

Thanks for your suggestions, but luckily I got a call from the ENT this morning that they have an open appointment for tomorrow. So I will have the VNG results prior to meeting with the Docs.

I do not particularly feel I have balance issues, at least not severe where I am stumbling. If I walk down a hall my path my be crooked but just not sure. I suppose now that I have this I am watching out for it more closely. In the past few days I think I may feel a little wobbly and dizzy, but that could just be in my head now that I am looking for these things. This is why I requested the VNG, to got solid proof of any issues I may have with balance.

If you do have balance issues can they come and go or are they generally consistant?


I will say that this past summer I went to a park with my son, we got on a few roller coasters, and I definitely felt sick for the remainder of the day. Not sure if that was the AN or just that I am getting older and can't handle those things.

I also remember that a few days after the roller coasters, I lost my hearing a bit, and then gradually came back. It seems as though turning upside down with a tumor in your head is not a good idea  .

When I say lose my hearing, it just sounds like everyone is talking through a tin can on that ear. When the hearing issues 1st appeared 2 years ago I though there was something wrong with the phones, but soon realized it was my ear.

Flying also impacts my hearing, I recently traveled for work, I was in so much pain on the decent I was in tears. It took a few days for the pressure to be relieved.

John

[Gloria Nailor]

I personally only had mild balance issues before my diagnosis - when I would walk at night with my husband in the dark (we use flashlights in the winter months), I was unable to walk in a straight line - also, sometimes I would be walking through a door and hit the frame - after my surgery, I still cannot walk in a straight line at night with just a flashlight, I walk OK in the daylight : ) sometimes if I am looking at something off to the side with my head turned to the side while I am walking I will stagger a bit, that is different since the surgery, it doesn't always happen though.  Some people seem to have major balance issues, I am lucky there.

[Echo]

Hi John,

I've always been clumsy, walking into door frames, tripping, etc., so for me it took a while to notice my balance issues.  They were subtle in the beginning prior to my diagnosis and then during the year after diagnosis as my AN continued growing my balance symptoms increased.  I would bend over to pick something up and then literally wobble standing back up.  I would turn while walking and find myself taking a misstep, as if I had been bumped by something. Also, similar to Glorianailor, I found I had trouble walking outside in a straight line, especially in the dark.  I wander from one side of the sidewalk to the other and back again! Total darkness outside without streetlights or a flashlight is a big problem for me. 

I feel light headed frequently but nothing I can't deal with.  I have a sense of wobbling or wandering daily and do find I work at focusing on where I'm wanting to go when I walk.  I don't think I ever have a day where I have absolutely no balance issue.  I do have days when I am over tired or struggling with a wonky head that my balance becomes worse.  I wobble more and feel unsteady.  Thankfully those days are not frequent.  I'm taking vestibular therapy now and hoping to see an improvement over time.

Look forward to hearing how your test went and what your results are.

Take care,
Cathie.

[Peggy]

Hi John,
I haven't been on this site in many years, I went to Dr David Andrews in Philly, saw Dr Wilcox also. I must say they were both great.  good luck with whomever you see.

peggy