How were you told about your AN?

[Sue]

I, too, am sorry you found out about a major medical problem in the way that you did. Usually technicians and their office are very guarded about what they can tell a patient. 

  Mine was pretty conventional.  I had the MRI on a Thursday I believe, and on Monday morning I got a phone call from the neurologist who had requested the MRI, after I was sent to her.  When she said who she was, my first thought, was Crap, the DOCTOR is calling me in person. Then she told me they found "a mass" and then she explained exactly what it was and that it was benign.  Her office had made an appointment for me to see a neurosurgeon that same day.  I never saw the neurologist again, and was bumped up to neurosurgeon and then to the radio-surgical team at Gamma Knife Center of Oregon at Providence Hospital.

Take care,

Sue in Vancouver USA

[cindyj]

I sort of figured mine out with the help of this forum...I had already learned to live with/accept my vertigo, but I went to my ENT this January to see if he could give me something for my tinnitus which I have had for about 2 years (he had given my friend steroids for her new ringing and fixed her right up, so I thought I'd get some too).  No such luck, he said I would need another test done the next week...I didn't ask questions, just left the office.  Later called his nurse to ask why I needed another test when nothing could be done for tinnitus (me being so wise and all), she said he was just ruling out other things like a tumor...oh, a tumor, ok, guess I'll do the test.  I then hopped on the internet - w/in a few moments came across ANA and knew I had an AN.  It was another couple of weeks til I had the other test and ultimately the MRI and the phone call from the ENT, but I already knew what he would tell me.  Thanks to this forum  , I was already pretty educated and didn't hit the floor when he gave me the news. 

[leapyrtwins]

cindyj -

that is kind of cool    You actually self-diagnosed yourself and you were right, which I find very impressive.  It's great that you were level-headed enough to do something like this.  Good for you 

I've often looked into medical stuff on the internet and found myself imagining that I have some rare disease with symptoms that I have talked myself into   

Jan

[Nancy Drew]

I sort of self diagnosed myself by the info the ENT gave me before giving me the referral to the AN doctor (can't remember what kind of doctor he is, but he isn't a neurologist).  The ENT said I had a tumor on my hearing nerve.  I googled tumor hearing nerve when I got home and it came up acoustic neuroma.  Of course, my AN was found by accident, and I wasn't having any symptoms so to speak so I didn't understand why he said what he did.  Confused until I called and got the exact diagnosis.  Don't these doctors understand that we are going to go home and google.  Just come out and say it right off is what I think even if they are referring you to an AN doc.  Maybe they  think some of us can't take it.  In my case, I think I would have rather been told up front.  Nancy

[leapyrtwins]

(can't remember what kind of doctor he is, but he isn't a neurologist)

He might be a neurotologist - a very specialized type of ENT.

Jan

[cindyj]

Jan, my husband thought I was being ridiculous when I found the AN "diagnosis" - he kept teasing me about my "brain tumor" til the doctor confirmed it   He really should know by now that I am always right!!

[leapyrtwins]

Cindy -

sounds like your husband could be part of my family because ironically both my father and my brother jokingly diagnosed me before my MRI did.  About a year before I was diagnosed I was spending some time with my older brother and mentioned that I had a headache.  My brother turned to my kids and said "uh, oh, your mom's got a brain tumor".

Then three or four months before I was diagnosed, I started to notice diminished hearing in my AN ear and mentioned it to my dad.  He said "Well, you never know, maybe you have a brain tumor".

Yes, my family members do have a sick sense of humor  but I sometimes wonder if they subconsciously knew something.

Jan

BTW, in my experience the wife is ALWAYS right!  LOL

[rezski]

For many years I had been having an anual "ear infection" with hearing loss and tinnitus.  It always went away in a week or so. I am in a hearing conservation program at work since I work in noise and my hearing had been sub par from the start in both ears.  Then a year before I was diagnosed my right hear hearing dropped too much and was a reportable incident.  Then it inexplicably got better the next year. In the meantime in 2005 I had had my illeostomy from Crohns and pre cancer made permanent when 2 months later I got the stuffed ear, tinnitus and more hearing loss that wouldn't go away.  I went to my PCP then to an ENT who sent me for an MRI with contrast to "rule out a tumor that only shows up that way"who found the AN.  When I was called in to discuss my results I was kind of numb being that I had just been through a 2 year surgical whirlwind that had changed my life and was not in the mood for a new problem. When I saw Dr, Backous I found out I could wait and have been watching and waiting ever since with annual MRI's.  My next one has been extended to 18 months due to no new growth.  I have decided to go for radiation if and when it ever grows.  A ski patrol friend of mine had a larger AN radiated a few years ago and has been fine ever since.
Caroline

[Denisex2boys]

This is one thing I like about our testing facilities in Canada - the Technicians are not authorized to give out information - and a written report goes from one Dr. to another - we are not given our information to deliver from one to the next unless already diagnosed.  I had to take cds to London to meet with the Surgeon and that was it - but I already knew what I had.

[chelsmom]

Boy Nicloe, I don't know how you even managed to drive yourself home after discovering you had a serious problem that you didn't understand.  I'm sorry you had to go through this.

I find it interesting that so many of you had to even wait days, even weeks to find out the results of you MRI's.  This is the 21st century for heaven sakes where everything is just a push of the send button from the lab/radiologist to the doctor's office.  Here is how it all hapened with us.

Chelsea had been having headaches for several years and sometimes a plugged ear.  This was diagnosed as swimmers ear and stress headaches.  In her senoir year of high school she started have some dizzy spells that only lasted a few seconds and then some whooshing sound in her ear.  I noticed that her left eye didn't always blink in sink with her right eye but no one else saw this.  She was sent to a neurologist one week before she was to graduate.  While there I could tell that the doctor was concerned and scheduled an MRI at the local hospital 2 days later.  That's when I really knew there was something wrong.  One usually does not get in for an MRI that soon unless they suspect there is a problem.  Chel's went to school and took her finals and then met us at the hospial at 3:00 pm.  The neurologist had asked us to call him after the MRI was complete and that we might need to come back to his office to discuss the results.  At 4:30, when the MRI was finished, we gave him a call and he asked us all to come to his office whcih is in a different town.  When we got there, it was after closing time, he greeted us and took us in to his office.  He dropped the bomb.  He turned the screen and showed us the MRI and the white spot in her brain looked like a huge ball.  We were all in shock to say the least.  Dr. Kline sat back in his chair and just shook his head.  He told us that he was sure that it was an AN but we would have to wait to have that confirmed by the neurosurgeon.  He said that in all his years of practice he had only seen two of these and never one this large and never in someone so young.  Of course this was on a Friday evening and we would not be able to get the ball rolling until Monday to get her in to see a neurosurgeon.  Or experience has been fabulous with every doctor we encountered during this ordeal.  He, Dr. Kline, gave us his cell number and told us that we could call him anytime if we had any questions.  The next day, Saturday, her PCP gave us a call to let us know how sorry she was.  I guess if you have to find out that you or your loved one has a brain tumor, we were the lucky ones to have the such caring people to break the bad news.

Michelle

[Kathleen_Mc]

Long story short....went to the hospital to have nerve conduction tests in the morning and then a CT.....all of a sudden they had an opening for an MRI at 5 that day and I was to stay at the hospital until it was done ( I had worked all night the night before and welcomed the couch they offered while I waited), I knew they had obviously found something on the CT and that's why the "opening" for the MRI that day (after usual hours). After the MRI the tech put an image on the computer screen to which I said "holy *)$#, I'm a gonner"....he handed me my neuro's phone number who was waiting by the phone for me.....by that time my parents had been long informed, surgeon booked and all that stuff.
Topper.....they let me leave the hospital to travel home by subway and driving myself without even questioning me if I was OK.
Can't say I remember anyone telling me what it was called that day....but then aain maybe they did!
Kathleen

[wendysig]

Nicole -
Sorry to hear how you found out about your AN.  The facility where you had your MRI done certainly could have handled things far better than they did and maybe the envelope should have been sealed or something.  Your doctor really, really should not have had you pick up the films and report in my opinion.  I too would have been curious and looked at the report and gotten the shock of my life.  This is what happened to me.  I'd been using over the counter ear drops beause I thought I had wax in my ear and gave myself an ear infection.  My internist gave me prescription ear drops to clear it up and I overused them and gave myself a fungal infection.  The doc gave me antibiotics to clear that up, but apparently suspected something and sent me to the ENT.  He thought  it was sensorineural hearing loss at first, but after an abnormal audiogram and ABR, sent me for an MRI.  He didn't want to tell me what he suspected, so when I went home I looked up the possible reasons for the MRI he'd ordered on the internet.  An AN was one of the possibilities.  It just so happened I had an appointment with my internist a few days later, and he accidentally told me about the AN, thinking I already knew..  My ENT had me come back in to see him earlier than originally planned, but that was still a full week after he had gotten the films and report.  I found this to be truly uncaring on his part, but he sent me to a wonderful neurotologist, so it all ended well.  Some docs just don't get the fact that we, as patients  need to know ASAP.  I realize they have many patients and are busy, but a diagnosis like this, even though, in my case  and many others was not life threatening should be handled quickly and with care, in my opinion.

Wendy

[28 Fracs]

After complaining to my PCP for 3 annual physicals that my hearing was going in my left ear, he finally referred me to an ENT. I was fortunate to see the PA and not the doc, because she was the only one there that had seen an AN. She sent me for an MRI (no contrast). 9 days went by before I got the call, driving home from work, that I had an AN. She simply said we'll refer you and don't worry about it.....I about crashed.

[Nancy Drew]

28 Fracs,

Looks like you are new here.  How are things going for you?  Treatment or watching and waiting.  Hopefully your journey is a positive one.

Nancy

[Pembo]

I had a CT for what the dr suspected was sinus problems. He then sent me on to an ENT. The ENT thought "he saw something" on my CT scan and ordered an MRI. I had the MRI on a Saturday morning. I asked for and received the films before I left. I came home, slapped them up against the window and saw a big white blob on the right side that wasn't on the left. I thought, well the ENT was right, there is something. I still wasn't that concerned, just happy there was something that was making me sick.

I saw the ENT on Monday afternoon. I was put in an exam room and the nurse took the doc the films. He came in the exam room and his first words were "do you want to go to the Clinic or University?" (referring to the two major Cleveland hospitals). Then he brought my husband and I to where we could view the xray and he said you have an acoustic neuroma. He told us that he had trained under Dr Megerian at University and he was the best. He then proceeded to call Dr. M's cell phone to get us an appointment the very next day. Dr M didn't see patients the next day but he saw us. Day after that I saw the neurosurgeon and we scheduled the surgery. 

All because the ENT "thought he saw something" on my CT. The surgeons were amazed that he caught a very small abnormality on the CT.