new here...so frustrated i want to scream!!!

[scarriegirl]

hey there, i'm carrie in boston, and i was officially diagnosed a month ago after years of suffering from headaches, dizzy spells, and finally hearing loss and numbness.  i was really losing my mind trying and trying for a diagnosis...had so many tests....catscans, sonograms, sinus tests, gi tests, and finally sent to a therapist to find the source of my "tension"  i have had trigger point injections, accupuncture, physical therapy, i have done yoga, swimming.  multitude of drugs that did nothing only to FINALLY find my AN.  so i am grateful to have an answer, but in the meantime, i still have numbness headaches dizziness tinnitus extreme fatigue...and more.  i have had my first two consults and am leanng towards microsurgery, but i have to wait till the 17th for the neurosurgical consult, and oct 8 for vestibular testing, and oct 21 for follow ups!!!!  i am so frustrated.  i feel like i have finally found an answer, but now its a whole other type of runaround.  i just want to get into action and do something about this.  waiting is agonizing.  and i continue to be in pain.  glad to find this board as noone can really understand how i feel unless they have experienced it and noone around me has.  just wanted to rant a bit and thought this would be a good place to do it.  thank you for making a place for me!!
-carrie

[GRACE1]

Sorry to have to say welcome to our world.  And sorry you had to go through all of that before you were finally diagnosed.  I know you hate the waiting, but rushing into treatment is not what is best for you.  Go to the doctors/appointments and investigate all your options.  Easy for me to say, huh?  I'm not the one in pain and discomfort.  Just know that you are not alone. 

Grace

[lacey7]

Hi Carrie,
I'm also sorry you were diagnosed with an AN.  I'm glad you found this site.  They have helped me alot, and I changed doctors, thru recommendations from this site.
It's so hard to wait, after you are diagnosed.  I found that very hard to do.  Where I went in Michigan, tho, actually made me a surgery date, after my first consultation.
That helped alot, just to know an actual date.  I NEVER had to have vestibular testing!!!!  That was one thing I didn't have to wait for.  Wonder how many on this site had to have that?
Just know we are here for you.....and, you will probably find some people here that live in Boston, and maybe can recommend doctors, if you are interested.
Please take care, and know you are not alone.
I am two months post-op.........so still am recovering.
I'm praying for you.
Lacey

[ppearl214]

Hi Carrie and welcome.

There are so so many of us located in Metro Boston and around the NE areas that can help answer questions regarding local AN follow up. there is also a very casual brunch in Worcester that we are doing in November (see this thread:  http://anausa.org/forum/index.php?topic=7255.30), which is a great opportunity to face-to-face meet many other AN'ers. I'm not sure if you contacted the ANA office, but they offer a Willing-To-Talk list of folks that volunteer their time to speak on the phone to those that want to speak to someone who can understand what it is to walk in our shoes.  The ANA is a terrific source for information as well as doing what you have already done... reaching out to others here.

Why don't you start to tell us about your AN? Do you know the dimensions of it? It's exact location? (Many times, the MRI written report will note all this). Have you met with any AN treating docs yet, either in Boston or elsewhere? Many of us have been treated locally, whether at Mass General or Beth Israel or other local facilities.

We are here to help... you are not alone... we do understand, as you note... as we walk this with you.  I know it's scary... but try to remember this... it is benign... it is treatable... there are many folks that truly do understand... and we are here for you.

Again, welcome.
Phyl

[Jim Scott]

Hi, Carrie:

Wow, after reading about the long and torturous path you had to trek in order to receive an acoustic neuroma diagnosis, I almost hesitate to comment that I'm sorry you have a reason to be here.  Still, you're here - and you are certainly welcomed.  Grace gave you sound advice: don't rush things. Your pain and discomfort make that advice sound hollow, I know, but it remains sound.  Some of our members have suffered with post-op complications that might have been avoided if they had more information and not 'rushed' into surgery (or radiation).  We want you and any newly diagnosed AN patient to avoid that, if possible.

I was 'fortunate' in that my symptoms cropped up rather quickly and by the time I was diagnosed, surgery was my only real option.  The doctor I chose wanted to do it quickly because the tumor was pressing on my brainstem, which is dangerous.  I was lucky to have a great neurosurgeon and radiation oncologist.  I've benefited from their expertise with a good outcome.  I want you to be able to say the same thing someday so please try to be patient, research your options and choose a treatment, doctor(s) and facility carefully.  An informed patient is our goal here and we'll do whatever we can to help you become one.  We're not doctors and we don't pretend to have all the answers but we can offer practical advice based on our collective, real-world experience and steer you in the right direction, regarding information resources, etc.   Please don't be a stranger! 

Wishing you better days ahead.

Jim

[Lamsue23]

Hi Carrie,
     Sorry to hear you have a AN but you're at the right place to sort all your options.  We have many from the Boston area.  I'm from NH and I'm 1 month post-op.  These wonderful people on this forum are the ones that helped me a lot and they will be there for you too.  Your journey has been a long one, now you know and we'll be here to help you with any questions you have. Take it one day at a time........

[tenai98]

Hi Carrie
We all understand your frustration. I'm a newbie as well..Just diagnost 2-3 weeks ago, but knew well beforehand what I was facin.  It is an emotional roller coaster ride..Many ups and downs.  One day at a time, do research, interview doctors and most of all..ask tons of questions...and its best if possible to tape ur consultations to review at a later time when your brain in not in overdrive...
Jo

[Debbi]

Hi Carrie-

We all understand your frustration!  And, those of us who have a special need to be in control (yes, me!) can probably empathize even more with the agony of waiting.  I waited just under two months from diagnosis to surgery and I can safely tell you that it won't kill you, but it will make you temporarily crazy!  It is worth a little extra time, though, to find an experienced medical team that you feel comfortable with. 

You've got wonderful resources to draw upon in the Boston area, so ask away.  This is always a safe place to vent, cry, rant, whatever.  We get it.

Debbi, just a little south of you in NJ

[28Lisa]

~ Carrie, Im glad you found this forum its a great source of information on hand.  I didnt know what to expect so I was less anxious, even being my first hospital stay ever..... apart from birth..  Just try not to be tense, always have positive thoughts and do pray about it too.  Its been almost a year after my A.N. removal, theyre more hurdles to cross but its a part of the healing process Ive come to learn.  Also get a second opinion, now that you can educate youraself, you can take notes in preparation to meet with the drs.
kEEP US POSTED
Take Care
Lisa

[Mickey]

Hi Carrie! So much help hear from so many nice people with a AN problem. Please read about, just to let you know your not alone. Take your time and hang in there you will come to some conclusion on what to do. There are many options and you`ll pick whats best for you. Prayers are with you along with everone here. Mickey

[Nancy Drew]

Hi Carrie,

Not much new to say other than what has already been said, but I can tell you that the waiting is really frustrating.  I am a month away from having treatment, and it took me awhile to get to my decision.  Research, ask questions, find a good doctor and listen to your "gut".  I didn't buy into the whole "gut" thing at first, but it will come in time.  The "gut" really does speak to you!  In the meantime, use this board as a resource.  I have ranted and raved so much here, but these people still let me hang around although some have said I should take a break.  Some great people here! Hang in there.

Nancy 

[leapyrtwins]

Carrie -

welcome to the forum; there's always room for one more    I'm sorry it took so long for you to be diagnosed, but unfortunately that isn't uncommon. 

Everyone who posted before me gave you some very sound advice, so at this point I don't have anything new to add. 

I had surgery (retrosigmoid) and I also have a BAHA implant (bone-attached hearing aid) so if you want to ask anything about either of those, please don't hesitate.

You mention that you are in Boston, but I didn't see anything about the size of your AN.  How large is it?

Jan

[Rivergirl]

Hi Carrie in Boston, your story sounds very similiar to mine.  I go for vestibular testing Oct 22 at MEEI, and another CT scan and MRI.
It is scary in the beginning but the more you read the stories here the less afraid, at least that is how I feel.  After 2 years of feeling like a hypochondriac, I finally got my diagnosis, but I didn't want it, I was settling into my hypochondria role.  You will get lots of support here and I think the time we have to make decisions on our treatment is very valuable.  Right now I don't think about treatment, I just read the posts, the old archives and learn as much as I can.  We are here for you, you are not alone in this journey.  I am sorry you are here though.

[wendysig]

Hi Carrie,
You have certainly been through your share of tough times just getting a proper diagnosis. The AN diagnosis is a lousy one but it is our common bond.  I never throught having an AN would also bring the blessing of meeting all the wonderful people here.   Welcome to this forum -- I'm sure you will find it a wonderful source of information and comfort.  Feel free to rant, rave, cry and  even laugh.  We will be there for you to help in whatever way we can.  I think you will  find this forum a wonderful scource of comfort, information, compassion and hiilarity -- we can all be very serious but we like to joke around and have fun too.  It is important that you do your research and meet with other surgeons and radiation oncologists so that you can make an informed decision on treatment.  I am not trying to discourage you from having microsurgery as this is t he treatment I ultimately had.  I am just cautioning you to make andecision and not jump into anything.  There are no do overs so make sure you have made the right decision for you!

Wendy

[MAlegant]

Hi Carrie in Boston,
Welcome to our wonderful and supportive group.  Take a deep breath and go at each of your steps toward surgery one at a time. I had microsurgery (see my signature) and I'm now 6+weeks post-op and doing fine.  The after-effects of surgery for me have gotten better every single day.  You will come through this in your own way and then will carry on with your life.  Positive visualization helped me a lot to manage the anxiety pre-op.  Keep posting and sharing; we will share with you as well and you will see that you are not alone.  My son is at Berklee in Boston so I visit quite a lot.  Love the city.
Best of luck to you,
Marci