Recently Diagnosed

[Melissa778]

I was diagnosed with AN approx. 2 weeks ago.  My doc said it's 1.6cm X 1.6cm.....I've done some research and I'm a bit unclear as to whether this is large or small for an AN?  I'm dizzy all the time, I have a headache and neck pain every day, sharp pains in my eye, ear, and back of my head, I get alot of facial twitching as well.  My hearing isn't "noticeably" off, but the more I pay attention to my hearing on that side the more I begin to think it is a bit off.  What can I do to help the dizziness?  I don't see a Neuro for another week.  So I'm in limbo waiting and worrying....which I think may just be making my headaches and dizziness worse.....It's so frustrating waiting to see doctors.  Do most suggest you get more than one opinion?

Any input would be great.

[ppearl214]

Hi daydreamer and welcome. I'm sorry you have received this diagnosis but glad you found us. I know the info can be overwhelming, so please take your time... and if need be, step back for a day or 2 to let everything soak in that you are reading/learning.

It is my understanding  that, based on the dimensions of your AN, it is considered small to mid-size. Sounds like you do have options and some research to decide what will be best for you.  There are many forums here that may contain threads that address such questions.  If you check the "balance" forum, you may find info re: vertigo and ways to counter-act (whether by meds, etc).  Try the "Search" option here for particulars.  There is a wealth of info available.. and those here to help you along.

It is going to feel overwhelming... and know that we are here to help in any way we can by sharing experiences of our own AN journeys. Please hang in there... and welcome to the site.  If you have any questions looking for particular answers... just ask.. we're here to help.

Again, welcome.
Phyl

[lori67]

Hi Daydreamer.

I agree with Phyl - I think the size is probably considered on the larger size of small - so you should be able to take your time and research all your options and to get as many opinions as you feel comfortable with.  Most people will suggest multiple opinions, but I felt comfortable with the credentials and suggestions of the first one I went to and felt I didn't need any more opinions.  I also had a bit larger AN pressing on my brain stem and causing some issues, so I didn't have much time to make my decision.  Fortunately, even given more time to research and get opinions, I would have made the same decision in the end anyway.

As far as the dizziness, I'm not sure if there's much that can be done without seeing the doctor in a week.  He might have some suggestions for you - in the mean time, just try to take it easy - and hold on!    Hopefully, the week will go by quickly for you so you can get some of these questions answered by your doctor.

Good luck to you!  We've all been in your shoes and know how frustrating it can be.  Keep us posted!
Lori

[Kate B]

Hi Daydreamer,

My AN was approximately 1.5 cm and they called it a borderline small/medium tumor. It really depends on how far it protrudes. The Acoustic Neuroma Association from Australia has this diagram that you may want to consult.
http://anworld.com/stages/

All the best,
Kate

[HeadCase2]

Hello daydreamer,
  Most of us felt overwhelmed for a while after being diagnosed with AN.  That's why we recommend writing down all your symptoms and questions for your doctors appointment.  That way you won't forget to mention something.  We also recommend taking an advocate or significant other with you to your doctors appointment.  You may be a bit wired up, and the advoctae can remember to ask all the questions and write down the answers for later perusal.
  Good luck with your doctors appontment.  There are some threads on this forum about questions to ask, if you find that helpful.  As you get into your "research phase" about what your have and what might be done about it, know that we've all been through it, and we're here to answer any patient experience guestions you might have.
Regards,
  Rob

[leapyrtwins]

Welcome Daydreamer -

as others have said, 1.5 is considered the higher end of small and the lower end of medium.  At this point, both radiation and surgery are usually possible treatment options. 

The key to choosing a doctor and a treatment is doing your research and then deciding who and what is right for you; make sure you find someone who has a lot of experience with ANs.  If you feel you need more than one opinion, go with your feeling.  If you find a doctor that you are comfortable with and feel confident about, you may decide to stop there.  There is no wrong or right answer. 

I chose surgery with the first and only doctor (neurotologist) I consulted with.  I talked to him both in person and on the phone several times prior to my surgery, but I didn't consult with anyone else (except for the neurosurgeon, once I scheduled my surgery).  I was, and still am, very comfortable with that.  That was my choice, but it may not be yours.  Others have consulted with lots of doctors.  Do what feels best to you.

Good luck, and remember we're all here if you need us,

Jan

[Kaybo]

Welcome!  I wish I had some comforting, wondrful words of wisdom, but none are coming right now... Just know that you have come to the right place for support and encouragement!
Thoughts & prayers coming your way!
K

[OTmomma]

Hi Daydreamer,
  I guess I am recently diagnosed as well and this is my first posting.  I was diagnosed in 11/07 and had surgery on 1/2/08.  My AN was 1.8 cm and I came to this website for information before I even spoke with the neurosurgeon.  I agree with everyone that this is a great place for information and you do have to go with your gut!  I researched the neurosurgeon and knew he had done hundreds of these at one of the best teaching hospitals.  No need to get a second opinion.   The AN affected my balance and coordination more than my hearing although I did have some hearing loss for spoken word.  I had said that losing my hearing on one side would be no big deal since I hoped that I would not lose it at all.  Well, unfortunately, the tumor was so wrapped around my acoustic nerve that they were unable to preserve my hearing..so now I deal with the loss like any other loss!  I have been lucky not to have headaches that are much worse than my previous migraines and the balance improves day to day.  Just weigh all your options carefully to make the best decision for you.
Good luck!

[Kaybo]

Welcome OTmomma!
Glad your surgery went OK and you are on your way to recovery!!
What kind of surgery did you have?
Glad you have joined the Forum -- it's a great place for encouragement & support!
K

[LADavid]

Hi Daydreamer
Welcome.  I'm new here as well -- but I joined on after surgery.  I was diagnosed with a 1.5CM in September 2007 and had my surgery 12/3/07.  I didn't really consult personally with anyone other than the surgeons at the House Clinic but I did scads of reading to understand my options.  At this point I haven't started second guessing my decision.  As you will see from posts on the board, recovery is a challenge especially where there is nerve damage or irritation.  It is something to take into consideration when you view your options.  I know I wasn't seeing mine realistically.  Please stay in touch with the group and let us know your decsion and plans.  The group has been a wonderful support for me and they will be for you as well.
David

[calimama]

I thought that Kate B's submission of a website with stages of AN growth was interesting, but this is for AN that start in the IAC. my is in the cistern (i think that was the term). It is med-large and has apparently reached the IAC (with some movement into) and has mass effect on the brainstem.

Does anyone know roughly how many of these do not originate in the IAC? I seem to have a lot less symptoms (do perceived balance, dizziness issues) than many here, despite mine being borderline large (2.2x2.9).

[sgerrard]

I thought that Kate B's submission of a website with stages of AN growth was interesting, but this is for AN that start in the IAC. my is in the cistern (i think that was the term). It is med-large and has apparently reached the IAC (with some movement into) and has mass effect on the brainstem.
Does anyone know roughly how many of these do not originate in the IAC? I seem to have a lot less symptoms (do perceived balance, dizziness issues) than many here, despite mine being borderline large (2.2x2.9).

You mean how many ANs are medial, not lateral?  Based on this link, about 12%.
http://archotol.ama-assn.org/cgi/content/abstract/118/2/127

They certainly do occur. I suspect that many of the big ANs that sneak up on people with no symptoms are in this category. By the sound of it, you are actually lucky to have caught yours relatively early. It does make me think you may want to get several opinions, on both surgery and radiation, and maybe contact one of the CK centers, at least to see what they say. Note that the link above is 15 years old, so not everything it says still applies.

Keep us updated as you learn more...

Steve

[calimama]

thanks Steve very much.
I found it interesting that you said i was lucky to have found this early. i will try to count my blessings wherever i can. that said...
I am still a little PO'd that my family doctor did not refer me to an ENT earlier. In Canada, you generally need to be refered to specialist by your FD.
In my case, i presented to my doctor nearly 3 years ago with complaints of hearing loss on the left side and tinitus. I recall her reaction clearly.... that tinitus is a "horrible condition" but there is nothing to be done. Upon looking in my ear and plugging one of my nostrils and asking me to breathe she said i was congested and that would affect my hearing. It was also peak alergy season i was told (i have never had any alergies). I was given a prescriptioin (3 repeats) for 'flonase'. I tried it a few times but found it did nothing. When i found out it was a steriod, i stopped. ONly used it for a week.
Having researched my condition for just a couple of weeks now, it seems pretty clear that i am not the first person who was wrongly diagnosed when complaining of the 2 symptoms that are the biggest indicators for AN... however rare it is. I have come across many websites that indicate that unilateral hearing loss and tinitus, particularly in young patients (i was 36) with no reasonable explanation for these complaints, should be investigated for AN -however rare- because of the seriousness of the condition and worsening prognosis for larger tumors.
I know i am not alone in my frustrations.
<sigh>

[Syl]

Daydreamer-

My AN is 1.5 cm. That's borderline small/medium.

Calimama-

I understand how you feel about the delayed referal. Back in late June 07, I went to my primary care physician with sudden hearing loss, extreme tinnitus, and lots of dizziness. She had some bloodwork drawn, but that showed I was "healthy". So she prescribed nasal spray for allergies. The medicine would take 2-4 weeks to work. After 1 month, I stopped taking the stuff because it didn't work. It took me 5 months to go back to the Dr. because I didn't want to play guinea pig for the drug companies.
   I wish she had referred me to the ENT immediately after finding that my bloodwork was fine. Luckily, after my 2nd visit to her, she did refer me to the ENT who found my AN.
   I would hope that my ENT has communicated with my primary care dr. to explain what he found and what other symptoms she should look for in others.
 
Syl

[calimama]

Syl...
Good on ya for not giving up so easy. Thanks for the story!