How were you told about your AN?

[Nicole222]

I am still in disbelief about how I found out about mine.  I had an MRI done on a Wednesday.  The tech said it would be read that evening.  I asked about how the films would get to my Doctor (across the street).  She told me that I was to come pick them up.  So, I called the next day to ask if they were ready--they said yes and told me to come get them after 9am.  So, I did.  I told my mom I was going to get them and she questioned it--"What if something is wrong?"  "Are you sure you should be picking them up?"  I said "Mom, they were read last night--if there was a problem they would have called the doc, and he would've called me"

So, I show up and the lady says "Here ya go" with a smile on her face and I signed for them.  I got in the car, with my toddler, mind you. I sat them in the seat next to me--knowing I couldn't read the film anyway.  But, then I peeked in and saw a report. I remember the first line--There is a well defined extra axial mass on the cerebellopontine anlgle.............. Then, the dimensions. Then, all I saw was--possibility of Shwannoma or meningioma.  All I knew at that moment was that "oma" was NOT good.

I called my mom and said "There is something there, mom"   

That was a Friday--my doc was already gone for the day --and there I was, with my baby in the car---not knowing what these words meant .

I have never said anything to the MRI place, but I feel I should--to protect someone else from receiving news like this the way that I did.

So, we had the whole weekend (which felt like an eternity) to search the internet and go nuts, before we could even talk to a doctor.

Not that there is a good way to find out,  but, I'm hoping that other's experiences were better.


Should I say something to the MRI facility, and if so, what?

[leapyrtwins]

Nicole -

that is a terrible story - you must have been devastated to find out this way 

I think that instead of talking to the MRI facility, I'd talk to my doctor and explain how you felt and ask him how to go about changing the facility's policy.

I went to my ENT because of fullness in my ear and diminished hearing.  This was about 2 weeks after seeing my internist for the same problem.  Internist gave me ear drops and said if they didn't help to see my ENT.  Anyway, my ENT couldn't see anything inside my ear, but the hearing test showed that I definitely had a hearing issue, so I was sent for an MRI.  I had the MRI and really didn't give it any thought because I just assumed my problem was really nothing.

A few days after the MRI, my ENT called me at work and told me that I had "something" in my ear.  He wouldn't say what the something was, but he told me there was nothing he could do about it and referred me to a neurotologist.  I asked my ENT how large the "something" was.  He told me he didn't know.

Before I saw my neurotologist for the first time, I picked up my MRI films and the radiologist's report from the hospital.  I read the report and that was when I first heard of an acoustic neuroma and a meningioma (the report said I had either/or).  I spent the next few hours on the internet trying to find out what an AN and a meningioma were.  The report also told me exactly how large my "growth" was.  While I was upset that my ENT didn't tell me the size, since he obviously knew, I decided that he just didn't know how to tell me.  Not a good excuse, though since I've known this particular ENT for approximately 28 years 

I do forgive him though, because he sent me to one hell of a good neurotologist    and IMO everything turned out the best possible way for me.

Jan

[Jim Scott]

Nicole:

I'm really sorry you had to learn of your AN that way.  That shouldn't have happened.

I had my MRI and really wasn't too worried about the results as my doctor suspected my recent loss of taste and appetite, disequalibrium and fatigue were due to a sinus problem.  Hardly life-threatening. 

The following evening about 7:00 PM., I received a call from my Primary Care Physician.  My Caller I.D. showed that he was calling from either his home or his cell phone, not his office.  That raised a red flag but  I didn't have time to think much about it.  After we exchanged pleasantries he said, with a distinct note of solemnity: "The MRI showed that you have an Acoustic Neuroma...and I'm afraid it's too big for the Gamma Knife".  I confidently replied: "What's an Acoustic Neuroma?"  I also asked what a 'Gamma Knife' was.  He gave me a very sketchy explanation of both the tumor and the radiation procedure.  Then he hastened to assure me that it was 'probably' benign - and treatable.  I wasn't completely convinced at that point but decided to believe him.  Meanwhile, my wife, hearing only my side of the conversation, was becoming extremely anxious to know what he was telling me.  At that point, he referred me to a local neurosurgeon for a consultation and rang off.  I then had to try and explain it all to my wife.  I jumped on the internet and within the hour I was printing off copies of diagrams of Acoustic Neuromas and explanations of what they were, where they grew and how they were removed.  I learned more about AN's in a few hours than I had ever wanted to know and by the time I had my first surgical consult I felt I was sort of an expert.  The rest, as they say, is history. 

Jim

[Tamara]

I was sent for the MRI to rule out a growth of any sort as being the cause of my progressive unilateral hearing loss.  As I was about to get ready to leave, they called me back for "one last MRI", so I sort of suspected at that point.  My ENT called the next day, and told me what it was, and what my 3 options were, and gave me the name of the neurotologist.  He basically laid the whole thing out for me at the visit, and that was that.

I agree that you should be talking to someone about how that all went - very poorly...

Tam

[lholl36233]

I was sent to the ENT because my hearing test showed moderate to severe hearing loss in my left hear.  The ENT sent me for an MRI on 5/7.   I didn't hear a word about it until my 5/23 follow up with the ENT.  At that appontment, I was sure he was looking at the MRI for the first time.  Then, when he saw the growth, he seemed surprised and started preaching to the other doctors in the room to always read your own scans because the radiologist called the MRI normal.  More than once, he told me"this isn't what you wanted to hear today."  Do you need an MD to figure that out?  He also told me more than once the hearing will go without following that up with information about wonderful devices like the BAHA that could help me.  Do you agree that could have been handled better?
I was sent to Boston on 6/9 for a second MRI and CT.  6/13 was the appointment with the surgeon who told me he couldn't be sure it was an AN until he saw the CT.  I confirmed today the surgeon's office received the MRI and CT from Boston. 
Stay tuned for the summary of my 6/27 follow up with the surgeon.  You will be able to knock me over with a feather if he tells me it was just an inflammation...

[Jeanlea]

After noticing a slight hearing loss on one side while talking on the phone I went to see a local ENT.  He had me get a hearing test then sent me for an MRI after confirming unilateral hearing loss.  He said he was looking for a tumor, but I figured it was simply precautionary.  The MRI was scheduled for a Saturday.  I had a follow up appointment for two weeks later.  On the Wednesday after the MRI the doctor himself called me and told me that I had a benign acoustic neuroma.  He spelled it out for me so I could research it online.  He told me he would set up an appointment for me with a doctor that had experience dealing with acoustic neuromas.  At the end of the conversation he asked if there was anyone I wanted him to call and explain about the tumor.  I said no, but thought that was nice of him.  After hanging up the phone I immediately got online and found this site.  Two days later I was meeting with the doctor who did my surgery. 

I don't think finding out by reading your own MRI is the way to learn about your tumor.  I would call or write to the MRI place and explain my reasons for being dissatisfied. 

Jean

[Kaybo]

I taught school at the time that I really started noticing my hearing loss so I had them check my hearing when they did the vision/hearing check on the kiddos.  I never heard a sound -- so I followed the HMO rules and went to my PCP who then sent me to an ENT.  He did a hearing test and then sat me down and told me that he suspected a tumor and sent me for an MRI.  I went on a Monday evening for the MRI and the Dr., himself, called me at school the next day.  I was young and naive and just really didn't get it.  He said that he sent all his "8th Nerve Patients" to a Dr. in Houston so off we went the next day - I was set up to have surgery within the week because of the size and the condition of my brain stem (all the way on the left side of my head!)

K!!

[sabuck]

Nicole,

That is absolutely terrible the way you found out the news and completely unprofessional behavior by the lab IMO. I too am sorry that you had to shoulder the intial shock without someone explaining the situation to you. Their methodology for getting the scan to the doc certainly needs to change. I am not sure who I would gripe to the most. For the sake of others in the future, it might help to let all parties know so that they might understand what a terrible way this is for the unsuspecting patient.
The ENT that ordered my scan called me at home over the weekend and was very patient in his explanation and was very reassuring. He is a really great guy and doctor. See the difference though?

[Debbi]

Nicole=

Absolutely terrible!  Agreeing with what others have already said - I'd talk to your doctor and ask his help in addressing the situation with the MRI facility.

BTW, I got a call from my ENT within an hour of finishing my MRI asking me if I could come in the next day for a visit to review the results.  AT the time my mother in law was in the hosptial, so I wasn't even thinking about what the MRI results were.  Had I asked my ENT on the phone, he probably would have told me - but, instead, he did in person (in a very kind and compassionate way) the next day.

Wishing you all good things...

Debbi

[LADavid]

Hi Nichole

To put it mildly, that is plain ugly.  I would scream at someone.  My ENT prescribed the MRI.  The MRI results were sent to him.  He told me the results (oddly enough I didn't understand what he was saying, and I believed the removal of the tumor would cure my tinnitus.  I think I said something that sounded pretty dumb like -- Yippee.  I think my ENT caught on to the fact that I can be kinda dense and patiently explained reality to me.  I didn't care much for reality and I still don't).  But at least he was there to clue me in.  I feel very badly for you.  All I can hope for is that your recovery is going smoothly to make up for the ugliness of the way you found out.

David

[Nancy Drew]

Again Nicole, terrible how you found out.  So sorry.  I think the way my ENT told me about my AN wasn't the best, and I don't think I will ever go back to him again.

My AN was found by accident.  Had very bad vertigo that would start in the morning and then go away around noon or so.  I called my PCP, and he told me to use some over the counter med for motion sickness.  It didn't work.  After about three days of the vertigo, the PCP sent me to my ENT whom has done several sinus surgeries on me in the past.  He did a hearing test, and it was fine.  He couldn't figure out what the vertigo was about so he sent me for a MRI.  I didn't think much of it.  The next day I got a call from the ENT's office, and they said can you come in today right away.  OMG, I didn't know what to think.  When I got to the office I was so paranoid.  I felt like the office staff was looking at me with pity.  When I went into the ENT's office he said I had a small benign tumor on my hearing nerve--nothing to worry about.  He never said that it was an AN, and since he was so casual, I didn't get worked up.  He had me do a balance test the next day, and he referred me to a doctor who could look at the results of the MRI, hearing test and balance test (also normal) since he didn't treat this kind of tumor.  The woman doing the balance test the next day didn't tell me what "it" was when I asked her.  She said they saw a lot of these tumors, a couple a month, and they weren't a big deal.  She said the treatment to remove them was very simple.  The soonest I could get in to see the AN doc was a month.  In the meantime I googled tumor on hearing nerve, and I came up with AN.  I started thinking the worst.  I called the ENT's office and asked if it was an AN.  The woman who did my balance test confirmed it as an AN, and again told me it wasn't a big deal.  I was on pins and needles until I saw the doctor.  I had to go through Christmas with this on my mind.  Meanwhile I was still having the vertigo every morning.  Once I got to the AN doc, he explained that since the AN was small and not causing problems with hearing and balance that W & W was best at that point.  He couldn't figure out the vertigo either, and he didn't think it had anything to do with the AN.  He thought it was related to migraines.  I did have a history of them, but never had vertigo especially without a headache.  Finally, my psychiatrist who treats me for bipolar disorder got to the root of the vertigo.  He had increased my meds because I had been depressed, and he decided to test my medication level.  It came back as the highest level he had ever had with a patient.  As soon as I went back to the normal dose, the vertigo went away.  My psych doc said he was sorry to have put me though such an ordeal, but I must thank him today because otherwise I might not have found the AN so early.  So, that is how I was told about my AN.   

Nancy

[leapyrtwins]

Nicole -

this is turning out to be a very interesting - although somewhat sad - topic.  I'm glad you started it.

Perhaps someone should write a book for doctors based on our posts called "How not to tell your patient he/she has an Acoustic Neuroma". 

David - are you looking for writing material?  BTW, I can't believe you said "Yippee" - now there's a very unique response 

Jan

[Nancy Drew]

Jan, Is David a writer?  Since I was told to tease Jim, then I think he would be a good one to write the book.

Yes, this is a very interesting and sad topic.  I think doctors should get a full dose of what is "good bedside manner" in medical school.  However, we should also give praise to the good doctors out there.  I have a few, and I am thankful for them.  I try to give them a pat on the back when I can.  It must be difficult for some to deliver bad news, and for those insensitive ones, then they should take a break and revisit why they became a doctor in the first place.

Nancy

[leapyrtwins]

Nancy -

David is actually an actor who also writes - and he writes quite well, I might add.  He is taking a break from acting while recovering from his AN surgery and he has already started, or will be starting, a serious writing career I think.  Jump in here and correct me if I'm wrong David 

As far as bedside manner, I totally agree with you.  While it has to be difficult to deliver bad news, it's generally part of being a doctor and doctors should be better prepared.  I think as patients it's our duty to praise - and thank - our doctors for jobs well done.  I do this every chance I get - my neurotologist is probably tired of being thanked at this point, but I think it's important for him to know how much I appreciate his time and effort.  All doctors are not created equal and I think the ones who go the extra mile deserve recognition.

I also believe that it's our responsibility as patients to help doctors who might not have a good bedside manner improve upon it.  Not by getting irrate and reading them the riot act, but by pointing out how we would like to be treated.  I think that some doctors are just too busy with their hectic schedules that pull them in many different directions to stop and pay attention to what a patient is going through emotionally.  The good docs seem to have learned this; the not so good ones haven't, but that doesn't mean they can't be trained. 

Jan

[oHIo]

With my second bout of severe vertigo in four months, I self referred to an ENT who didn't like the story I told him and my somewhat vague symptoms.  He debated about getting an MRI, but decided to push the issue.

On my 29th wedding anniversary, (a year ago this coming Monday) I had my MRI.  I attended a wedding that afternoon and thought nothing more about it until the message on my answering machine a few days later from the doctor himself.  Being a nurse, I know doctors don't call to "discuss test results" unless something is wrong.  I should have known though because the MRI tech made mention that the radiologist was in the building (it was a Saturday) and would read my films that day, so I might hear from my doctor sooner than later.

When I called the office back on a Wednesday, the doctor was out until Friday.  I convinced the nurse to give me the results with a follow up call from the doctor on Friday for questions.  I was still clueless until I started surfing the Internet.  I equated acoustic with ear and neuroma with tumor, but figured I could have surgery on a Friday and return to work on Monday.    When the search for acoustic neuroma kept sending me to brain tumor sites, I started getting nervous.