new to the AN world!

[mandy branham]

Hello to every one here, I am grateful to know I am not alone but sad to know how many are here and why.
I was diagnosed Oct.15th of this year after 8 months of being told I had allergies and to just take my nasal spray and go home, well I threw the nasal spray away, it way only masking the problem, so I done a detox, avoiding all foods that may cause a reaction of any type, I am on no meds and never have been, so this was just way to unacceptable, some dr.s just want you on meds and that's that, well I found a new dr. in Oct. he sent me to the ENT, who done a hearing test the same day and sent me for the MRI, I knew with in a week that the allergies were in fact a tumor, (i guess in a sense it is an allergy, I am allergic to this and want it gone )

anyway I am scheduled to see the surgeon on Nov.30th, I have been on the call list, but still waiting, the symptoms have become more noticeable in the last 2 weeks with other things popping up, is it just because I know now? or am I really having more symptoms?

I have trouble sleeping, I can't lay on the AN side it hurts and my face gets all tingly, and when I lay on the left side I can't hear, I know I need to get use to that part and soon, and to lay on my back I feel as tho I am choking, I have found I can sleep sitting up and the recliner will be my home for awhile, my eyes have been getting gradually worse, even with my glasses my vision is blurred, and the stumbling is getting worse as well, I am very active so I have been making myself walk more to help with my balance, I am using my eyes more which makes them very watery and I get head aches from that, I also have been having more headaches at the base of my head and behind my ear where the arm of my glasses lay, and I have become forgetful, which could just be I am thinking to much  ok I have done way to much crying, but it feels good to just let it out.........................."THANK YOU"

[kareno]

Hi Mandy: 

I am sorry to hear the news of your AN. Do not apologize for venting if it makes you feel better then do it.  When you see your neursurgeon make sure that all of your questions/concerns are answered and that they are experienced with the removal of AN's.  This AN group has helped me immensely and will certainly help you.

You will be in my thoughts and prayers!!!!

Keep us posted

Karen

[jaylogs]

Hmmm, I do remember after I was diagnosed everything seemed to be a little worse...my balance, my hearing...not sure if it was indeed getting worse or was it because I knew I had an invader in my head. The mind truly does funny things to you!  Hang in there and roll with the punches.  Good luck at your appointment!
Jays

[moe]

Mandy,
So sorry to hear of these other symptoms you are experiencing. I just responded to your other post, and said , basically "don't worry too much, your tumor is small-med)"

However, after reading THIS post, I'm more concerned for you, as you are too

 The fact that your balance is off, stumbling is getting worse, with the tinglies and headaches and blurred vision (okay, can anything else go wrong? ) -oh yea, watery eye.
Time to get aggressive, like someone else mentioned on your other post! Keep calling the docs. Something should open up if you are persistent.
Sleep and rest are so important. I hope you can get adequate rest in the recliner. Have you thought about just getting one of those diagonal foamy things to keep your head elevated on your bed so you can get a good nights rest?
My thoughts and prayers going out your way,
Maureen

[Lizard]

Mandy,
Just replied to your other post, but I wanted to add something.  I know its taking forever for your appointment, so why don't you have your records sent to House Ear Institute in CA, the leader in AN surgeries, and others who are willing to do free consultations such as University of Pittsburg Medical Center.  They have a great radiosurgery department and can give you an idea if this option will work for you as well.   I consulted with both and once you get your hands on your MRI and report you can probably have your consult in a week or so. 
Just an idea to help get you some answers faster and hopefully ease your mind some.
Hang in there,
Liz

[CNY]

It sounds like a cane might be helpful if you don't have one already.  I purchased a plain adjustable cane at the drug store when my balance was affected pre-surgery: it was also helpful after surgery, particularly if I was walking on uneven ground.  I used a walker in the hospital at first but then switched to the cane on my last day...

[mandy branham]

I do have my MRI disc, and I am taking it with me to the dr. I will be seeing Dr.Dodson at Columbus University, my wait is because he has been out of the country he does AN surgeries in other countries as well, my ENT dr. wanted me to see him because he has done literally 100s of these surgeries, and the ENT dr. told me that the tumor is pressing into the cerebellum so I am not a candidate for radiation,  and he was quite concerned with the symptoms I was already having, I am trying to rest as much as I can, but we have to keep working right up till the surgery (hubby and I drive truck, he is doing all the driving, i do book work) we have no children so hubby will be my primary care giver through this, HE IS A GOOD MAN 
I have been using the time to get things prepared for when I do have surgery, it don't make the wait any easier, and I will call them today and let them know what I am feeling now, I really hate to be a bother as I know the dr. has many patients, but I do have to keep them informed.

This site has answered so many questions for me, and yes when I look back I have been feeling off for quite some time, just now I know why........................BIG HUGS to all of you for your kind words and encouragement   

[lori67]

Just wanted to say hi and welcome - from someone who had "allergies" for 5 years!  Yikes!  

Amazingly, since surgery, I don't have "allergies" anymore.  

It's all overwhelming for you now, I'm sure, but once you have a treatment plan in place, you'll feel a lot better.  There are plenty of people here to support you along the way.

Good luck to you!
Lori

[Adrienne]

Hi Mandy,

Welcome.  Sorry you had to find out about us!

Yup, I can attest to the fact that once you find out, you realize how many more symptoms you have that you weren't aware of.  It's easy to 'make excuses' for things when you don't know you have a tumour.  For me, I didn't realize I had bad balance.  I thought that I had a 'weak core' when I was doing my exercises and would tip over.  I was working so damn hard to strengthen my core, thinking I was a total Klutz.  Well, the core work paid off in the end anyway, as I went into my surgery in the best shape of my life, and I really believe that helped my recovery be pretty easy.  I found out about a bunch of other things too, which were easy to 'dismiss' prior to knowing about the tumour (shocking in my face, etc).

You'll get through this.  It's not fun, but he research and work that you do before hand is the worst part.  Way more stressful for me than the recovery and moving on with my life.

Take care.  You're definitely not alone, but please know that it can all turn out OK in the end.

(hugs)

Adrienne

[CHD63]

Mandy .....

I'm with Liz ..... pick up another copy of the CD of your MRI (you may have to pay for it, but certainly worth it!!) and send it to HEI air express (or whatever is the fastest way from where you live), then if you do not get in to see the doctor this week, you will still have an additional opinion on whether this is urgent.

Be assertive ..... actually, be aggressive ..... it's your body and your future well-being at stake here.

Clarice

[cin605]

Welcome to our world!!!This is agreat place to vent and share info and actuall experiences.....i was told i had inner ear infectons and then meniers before they did an MRI...its was ten years + that i had all the symptoms your having...Try to relax and not over whelm yourself w/ all the info.
As others have said be very persistant w/ Drs..and tell them what you need...if you do not tell them ..they will give you everything under the sun!Send you here send you there....skip the middle man and go directly to the profesionals.
HUGS!!!!
Cindy(cin605)

[Jim Scott]

Hi and welcome, Mandy ~

Of course I'm sorry you've been diagnosed with an acoustic neuroma - but you've come to a good place, here.  These AN discussion forums are populated by caring, knowledgeable folks with lots of AN-related experience that can understand and empathize with what you're dealing with.  We appreciate your kudos to the site and the forums and we hope and will pray that this all works out well for you as you approach your surgery date. 

Jim

[Gus]

Hang in there; I'm also newly diagnosed with AN.  Mine started with what I thought was dental issues, then TMJ, the ENT, then the brain scan.  Very scary at first, but they say it grows slowly.  I've done some research now since Sept. and the best Dr. for surgery and to talk to in my opinion is at the House Ear Insitute.  I saw a previous posting and agree the best I've found for surgery is the House; Univ of Pitt for Gamma.  I sent my MRI and report to both and they got back to me with a free consultations (House-phone; Pitt-letter), within 1 week.  The House Dr. said he'd done over 900 of the surgeries; he's good based on what I found.  I'm new to posting, so have all his information and phone numbers if you need them.  The House clinic is is LA. 

[FLsunshine]

Make sure you speak to the Nurse Supervisor of the practice and not just the reception desk.  They can get you in faster - in my case it was in 2 days instead of 3 weeks!  You've got to push and be your own advocate.  Many here on this forum have taught me that.  .  Be sure to start a file with your MRI discs and the radiologist reports - both of which are available to you 48 hrs after the tests.  Always keep these with you at various doc appts.  Really helps to have these for second opinions, if you move or change docs, and to compare over time if you elect to w&w (watch and wait).

[Mark241]

Hi Mandy, we all shared some of the same symptoms, I acually had to smile when you said your eye glass frame gave you some pain, my did as well, and I remember my Doc kinda looking cross eyed at me when I mentioned it. Really knowing your symptoms and realizing them is important, your just becoming very aware now of what your body is doing.  Not that everything is related to the AN but it sure will feel like it.
I sent my films to House, Stanford, and Barrows. I decided on Barrows in large part because it's only a hour flight from my home. Like others' have said, get more than one opinion. Wishing you the best!