My Acoustic Neuroma

[DavyD]

Hello all. I just found this website today and I am finding it very helpful.

In November 2011 I awoke one morning with a slight buzzing sound in my left ear.  My ear felt like it was "plugged up".  I went into work and certain noises (phone ringing, people with deep voices) created a minor pain in my left ear. I left work early and went to see my family doctor who told me it was a sinus issue.  He prescribed a nose spray for me.  2 weeks later my ear still felt the same so I returned to my doctor.  He then decided to send me to an ENT. I finally got into the ENT in early February 2012. (I live in Canada, and although we have free health care it takes forever to get anything done.) The ENT informed me I had some hearing loss in my left ear.  In June 2012 I had an MRI done which revealed 2 benign tumors in my left ear.  They were both small. I believe one was 2mm and the other 1mm.  I will be going for my second MRI on June 18th this year to determine how quickly they are growing.  Again because of our medical system I do not get in to see the Dr with my results until September.  I am nervous and scared.  I lost my job last June and am still out of work but I will be returning to school in September for a 2 year program.  I'm hoping I will not need surgery for awhile because I can't miss school and as of September my Unemployment Insurance runs out.

[Echo]

Hello Davy,

Sorry to hear you are going through such a difficult time.  Were your benign tumors confirmed as Acoustic Neuroma's?  I haven't personally heard of anyone having 2 separate AN's in one ear, but perhaps others who have been here longer have heard of this and will let you know. 

I'm also from Canada (Ont.) so I can sympathize with you regarding our wait times.  What Province are you living in?  If you are in Ontario near the GTA you can gain support through the Acoustic Neuroma Association of Canada - they have bi-monthly meetings.  If you are interested email me and I can provide you with contact info.  They do have groups that meet within many Provinces.   

Your tumors are very small if they are Acoustic Neuroma's.  If you have to have an AN you are best to find it when it is very small.  Gamma Knife or Cyber Knife are non invasive treatments that work well on small AN's and if your tumor's are not AN's then the Gamma Knife or Cyber Knife may still be an option - your neurosurgeon will be your best source of info.  Like others with small AN's you may also have the option to do nothing but "watch and wait".  I have been living my AN for a year now and am only now considering moving forward with treatment.   

What I can tell you is that you do not have to wait a full 12 months between MRI's.  The neurosurgeons I spoke to (3 of them) all advised me to have my follow up MRI 6 months after my initial one was done.   You are however, only a few more days away from your follow up MRI so that's good news!  As for waiting till September for the results I would recommend you call your specialists office, remind them that you are having your MRI on June 18th and ask them if they would fit you in on a cancellation appointment prior to Sept.  If you explain you are anxious for the results and heading back to school you might get lucky and be moved up.  I have requested cancellation appointments before and it has always worked out well.  Meanwhile keep doing your research and learn as much as you can so that you are prepared for your next consult.

Best of luck and do not hesitate to email me directly.
Cathie.

[arizonajack]

Davy,

Can't you get a CD with the MRI images right after the MRI?

Check on that.

If you can get them (and the images from the first MRI) it's easy to see if there's been any growth.

A word of caution.

Since you are already experiencing a loss of hearing be aware that these ANs are insidious. Even when they don't grow (or grow very slowly) they can still be eating away at your hearing ability. I, and others, have learned that the hard way.

[Echo]

Davy you should be able to get a CD after the MRI is complete but I'm not sure if you can get it immediately or if you have to wait a few days.  Most likely you will have to wait a few days while the report is processed first and then you would access the request through Medical Records.  Medical Records will make you fill out a form requesting the CD and then you wait about 20 minutes and you should have it. The CD should be provided at no charge, but that may depend on the hospital.   

Cathie.

[DavyD]

Thanks for the responses.  I am also in Ontario.  I am in the Niagara Falls area and a Dr from Toronto comes down once a month to the Niagara Falls office.  After my appointment in September I think I will request to just go up to Toronto to see the Dr. 
According to the Dr they are both AN's.  He was amazed at the MRI and at one point there were 3 Dr's looking at my MRI and commenting on how fascinating it was because they had never seen anything like it before.  The Dr requested the CD because he wanted to take it to show other colleagues. 
I have noticed my hearing becoming worse and some days the buzzing in my ear is worse than others.  I have frequent headaches and my balance is off (I cannot walk "heel to toe").  I think the most annoying problem is the buzzing in my ear.  I find it very difficult to converse with people when there's a lot of background noise.  Days when my kids get overly noisy and the dog won't stop barking are almost unbearable.  I find it's creating a lot of additional stress on top of the stress related to losing my job.

[mesafinn]

Hi Davy,

I'm glad you found us---although I'm sorry you had to.

I am in Niagara myself.  Diagnosed in February at St. Cat's--and very frustrated with the wait times and experience.  I've been on EI in the past, too, and I'm happy to process--share what I've learned--listen--and help as I can.  Am happy to chat by phone, email, or meet for a cup of coffee if you ever want.

I suspect you see Dr. Rutka and am happy to share my insights and recommendations, and there are also some other good Canadian folks on here.  PM me if you would like.

Take care.

Patrick