Waiting, allways waiting?

[westcoastroller]

Started having ringing in my ear couple of years ago, have poor hearing in R ear.  I live in a small town and waited 3 months for appt with Local ENT. He thought I may have a cyst in my ear canal, and sent me for MRI Feb 16.  Week later the ENT told me I had a 1.3cm benign tumor he explained I had three options and I would need to go to Dr Westerberg in Vancouver.  I was caught off guard I didn't expect to hear that diagnosis.  I didn't ask many questions.  ENT office called and my appt with Dr W is May 16th.  Canadian medical system is all about waiting.

I am feeling pretty good now I don't know if I should be concerned about this AN.  My ear feels full and get little spells of dizziness that only last a few seconds, and my necks been sore. 
I find I really have to focus when I do things and I have had trouble speaking I can't come up with words. I thought I might have the start of alzheimers.  Could it be the AN?

Very bizarre thing this AN just don't know what to make of it.  Finding it hard to believe.

[jaylogs]

HI there and welcome to our little club! So sorry that you had to find this, but you'll not find a better resource and support system than here!  We are not doctors but can only speak to  you as people who have been in your shoes... and your story is VERY familiar, including all the emtions that go along with it.  Each person is unique, so bare that in mind as you read through the threads here. You tumor is considered on the small side, so you do have options as your doctor correctly told you. A neurotologist will probably look at all your MRI's and make sure that's the case.  Make sure you let your doctor know about everything you are experiencing.  The three main symptoms a lot of people complain about are dizzyness, hearing loss/full feelin in the ears, and sometimes facial twitching.  I haven't heard anything about the speaking issues, but that's not to say it could be related to your AN.  So just try to get all the information you can. I would recommend getting the free information packet that the ANA organization has put together that is full of really good information.  Just to the home page (www.anausa.org) and from there click on the new patients button and from there fill out the info.  Good luck and let us know what happens...we truly care!
Jay

[mk]

Hi, and welcome.

It is a shock of course to receive this diagnosis, but take a deep breath. Your AN is still small, and this tumors are benign and very slow growing. You have a lot of time in your hands.
I see that you have been referred to Dr. Westerberg. He is one of the best, and he collaborates with Dr. Akagami at VGH, who is one of the top neurosurgeons in N. America. You are fortunate that you have access to this team. I flew all the way from Ontario go have surgery with them and I could not have been happier.

May 16th is not too far - take advantage of the time to become as informed as possible (this forum provides excellent resources), so that you can go armed with a list of questions. Don't hesitate to ask around, we are here to help and offer advice.

Oh, and looking at your title, one of the main things that you learn as an AN patient (as you will also see on this forum) is to be patient and wait. With such a small tumor, you most likely will be placed in watch and wait at least for a few months. 

Marianna

[westcoastroller]

Patients is not my strong point.  I have only told my husband about the AN, really don't know what to say about it.  I think after May 16 appt. when I have more info I may let family and friends knownyj.  I have never been on a discussion forum before but then I haven't had an AN either.   

[leapyrtwins]

Patience is not one of my strong points, either 

Hang in there,

Jan

[nann]

Hi,
Had to comment on your post. I also have your symptoms. Not being able to come up with words, and trouble speaking sometimes, as well as the focus issue. It has been very annoying and unsettling. I feel as though I'm losing my gift of communication. I can also relate to your concern about alzhiemiers onset. Wondered the same thing.

                                     Nann

[westcoastroller]

I have 1 week till my 1st appt with Dr Westerberg.  Glad to hear he's a good Dr, thanks Marianna.  What should I expect at my 1st appt.  does anyone know if there are any tests or if it will be just a consult? In March I had a reallly fast MRI (6 min). 

[PaulW]

I too had problems speaking. This happenned before any treatment.
Words just did not flow out of my mouth they way they used to.
Words got jumbled and didn't come out.
I had the same problem typing, wrong letters and wrong words.
My tumour was small so I dont attribute this to the brain..
Interestingly these problems are common to people with vestibular disorders.

[nftwoed]

Hi;

  My feeling is the Dr. trend in AN, is waiting.
  I'm always wondering what the logical outcome of waiting is!
  A person can go deaf without tumor growth.

[mk]

Hi,

you should take with you any test results that you have already done, plus the MRI report (and  CD if you have it), just in case. If you haven't had a hearing test, they will probably order one for you. Ask also if you need a VMG (balance) test.
Given that your AN is still small, you will likely be placed in W&W. They should schedule another MRI within 6 months, to establish if it is growing.
Ask Dr. W. if he would also give you a referral to see the neurosurgeon he works with, Dr. Akagami. Even if you don't need to see him right away he has very long waiting lists, so it is good to be in the system.
Ask about all treatment options that are available to you (you have all three with your size, W&W, stereotactic radiation and surgery (3 types of surgery)). Ask for the pros and cons of each, what Dr. W. recommends given the size and location of your tumor and why. Make sure to mention your symptoms and if they are bothersome or not.

There is a list of questions available somewhere on the forum, as well as on the ANA website, it is good to print it out. Make sure to take notes (if you can have someone with you it would be great too) - it is so easy to get lost in the middle of too much information.

Good luck with your visit - let us know how it went.

Marianna

[Suu]

Hi WCR
Over here on the other side of the big pond (Australia) it's the 16th so I'm sending cyber hugs and humongous wishes for a speedy time getting all the answers today and coming to let us know what happened/happens.

Best wishes,
Suu xxoo

[westcoastroller]

I met with Dr W. on Wednesday.  I was very impressed with him, he had my MRI and showed me the tumor and assured me that it was still small 1.3cm by 7mm.  He advised that I have another MRI in 9 months and said 60% of AN's don't grow.  I was very happy to hear that.   I didn't ask enough questions, Dr. W did say to call if I had any questions. 

Just read your comment (Marianna) I might call his office in a couple of months and inquire about a getting referral to Dr A.

While I am waiting I will continue running, hiking, biking, and going to the gym.  I have been working out 4-5 days a week for the past couple of years.  I believed that if I am in good shape I will avoid alot of diseases and if I have the misfortune to get sick I will be able to fight it if I am physically strong.  If I do need treatment for this AN I am going to ready.