How were you told about your AN?

[shygirl]

Hi Nicole-

I'm sorry you had to find out that way.

I was having trouble staying upright, heartbeat would fluctuate between 40 bpm and 150 bpm(not good), and other "things". Cardiologist sent me to a neurologist where I had an EEG. The results were---epileptic activity. So off I went to the "MRI place". I didn't receive a phone call and had to wait 8 days for my appt with neuro. When I arrived at the appt with my 8 year old, the doc said point blank, "You have a tumor" and turned his laptop around for me to see. My little boy started crying. I could've choked the man. Anyway, I called a neurosurgeon and he wanted the films. I went to the "MRI place" and they gave them to me with a smile, asked me for $240. and told me not to lose them because they cost $8. per "page". I was p*@#ed! I didn't get a report and I can't get one because I told them where they could stick the $240.!! The neurosurgeon was very nice, had a great way of explaining everything and was compassionate. The ENT was the same. I never went back to the neurologist.

Shye

[Brendalu]

I kept falling so on a routine visit to my PCP, she asked why I was all banged up.  I told her I fell and she asked why?  Did I trip or what and I said no I just fell.  She sent me to get an MRI.  I had it on a Friday morning and when I got home the idiot who ran her office had called and left a message on my answering machine that I had an AN, two lumps in my breast (I also had my mammogram that day) and gliosis and a glioma.  When I tried to call her back the office was closed.  She was fired from her position the following Monday when I played the recording for my Doc.  It was a fun weekend.
Brenda

[Omaschwannoma]

GEEZ, some of these stories are just downright astounding!  But of course, I am not surprised as I too have had some of the worst luck with doctors in my town (this does not include my neurotologist).  I was misdiagnosed for about 12 years, saw about that many "specialists" and even had an MRI but w/o contrast in that time frame.  I'm sure had someone been clever enough to collect ALL reports and had they put them together they would've seen without a doubt I needed an MRI with contrast. 

SIGH.....I digress here, my story is I went to my PCP complaining of more hearing loss (had constant tinnitus for 12 years with hearing loss but was told it was the Bruce Springstein rock concert I attended when I was in my twenties  ) who sent me to ENT who kept cutting me off on every sentence  but, he did say he was looking for a tumor and sent me to a facility that double charged insurance (they got caught in the end).  After having me wait one week, I got a call from him where he said, "You have a tumor called an acoustic neuroma, I'm sorry."  He told me it had to be removed and recommended a neurosurgeon, blah, blah, blah.....is all I heard after that.  Funny, after all the doctors, and misdiagnosis' you would think it couldn't happen again, but it did!  Gotta love the doctors in my town!  My one-year post op was a nightmare and I was off again on the road to a not-so-special neurologist and then neurotologist who once again misdiagnosed me!  Lovely, and I paid these guys!  Can you see me fuming?  Anyway now I've got my neurotologist in Gainesville shaking his head in disbelief and he too has said his threshold is low regarding doctors I see in my town.  Well at least one doctor believes me and isn't afraid to dig into what's going on! 

[leapyrtwins]

Incredible stories.  Shye and Brenda - talk about insensitivity 

[pswift00]

My God, Nicole, your story is an absolute nightmare.  Sounds like professional misconduct on the part of the doctor- he leaves for the weekend and doesn't even call you?  Good grief! That's awful!  My story is nearly the opposite-

Admitted to the ER after having the flu for 4-5 days, complained of headaches and stiff neck, so they wizzed me into an observation room for fear of menengitis.  Doctors examined me and ruled out menengitis pretty quickly because I wasn't a zombie, but decided to do a CT scan to rule out an aneurysm, and 'because they had me there.'  The ER doctor comes back with the Dean of the School of Medicine, both of them with painted smiles on their faces, and tell me they 'found something,' explain that it's a shwannoma, like I have any idea what that is, but are reassuring that they're pretty sure it's benign and not cancer.  I reply, 'so this is common, right?'  Dean hems and haws a bit, and says, 'well, it's not common, no, but we all know what it is from our medical textbooks.'  Great, I feel completely reassured now.  So then a team of about 5 neurologists come in, all giddy as school boys, run a bunch of simple diagnostics on me that I pass with no problem, then they tell me they're going to put me in the ICU overnight to 'observe' me, despite my protests that I was fine and that I was just out playing softball and tennis last week, and wasn't going to suddenly  fall down or something.  But they wanted to keep me around so they could get me in for an MRI as soon as they could, so I had the MRI at about 11:30 that night, and the neurologists came back in to my room the next morning, told me what it was, that I was going to be 'fine,' that I'd have surgery to remove it and be 'completely fine' afterwards.  Two days later I was in the neurosurgeon's office and he was breaking down all of the depressing statistics related to the surgical outcomes, which is when I realized 'fine,' and 'completely fine,' are relative terms which to neurosurgeons mean basically, 'you'll be alive, you won't be a vegetable, and you'll be able to walk and talk and stuff like that.'

[Dan]

Hello all,  I'm sorry to hear that so many had bad experiernces, but then again I don't think there is a good way to tell someone they have a BRAIN TUMOR.  My experience with the doctors was as good as can be expected. 

The company that I work for does a hearing test every year, and the company Dr. told me that I had 30% hearing loss since last year in the left ear and that I should see an ENT as soon as possible.  A few days late I was at my PCPs office and he told me I should go right now to the ENT and not wait.  Without an appt. I went to the ENT on a Friday afternoon and waited over 4 hours to be seen.  The ENT also did a hearing test gave me cortizone and made an appt. for the next Fr. At that appt. he did more test and said that I should have an MRI done to rule out a BRAIN TUMOR and then explained about and AN.(not cancer, GK,surgery, wait and watch) of course this was only the abbriviated version of all he would explain later.  He scheduled the appt. about 3 days later for the MRI.  Where I had my MRI done there is a Dr. in charge of the Radioöigy that is responsible only for reading them.  Within 5 min. he called me in his office and started printing out pictures of my MRI and also gave me a copy of the CD and a copy for the ENT with all the pictures.  He took a few minutes and explained once again that it is a benign tumor and I had different options but that I should talk with my ENT for more info.  I drove straight to the ENT office and told the receptionist what the Radiologist had said, and this time without an appointment I was seen in about 10 min.
     
From the time that the company Dr. told me I had hearing lose until I was well informed about my AN was about 2 weeks.  Of course then came the really hard part, trying to make a decision, find the right Drs to talk to etc...  Thats another story though. 

Dan in Germany

[Kaybo]

Dan~
That is really neat that your company does a standard hearing test every year...can I ask, is your job hard on the ears or is that just part of a physical?  Do most companies do this and I am just unaware?

K

[yardtick]

I was having chronic sinus problems and what felt like ear infections for months.  My GP finally sent me for X rays, than he sent me to an ENT.  He sent me for a CT scan, that lasted 2 minutes.  The ENT tells me my sinus are a mess and it looks like I have a bulging ear drum.  He see something that maybe causing the bulge, maybe a piece of dried skin.  He wasn't too worried.  I than asked why I'm I getting stabbing pains from the ear to behind my eye, and the headaches.  He than said "Okay, I'll operate!  His secretary books my surgery for 4 months later and tells me how "LUCKY" I am because he had a cancellation. 

Surgery day comes.  WOW, when I woke up I was in so much pain and the battle began.  I was left out in the cold, I could not get any answers from the nurses and I never saw my Dr.  When I went for my 1st appointment after the surgery, I was told my ear drum was destroyed, the three bones in middle ear wiped out and the substance he sent off to pathology was real sticky.  I had to hold my jaw because it was trying to drop, but it couldn't and it was too painful.  He didn't answer why I had facial palsy, severe dizziness and headaches.  He looked at me like I had three heads!!  I went back to work less than two weeks later.  I was in pain, slow moving but because I had just started a new job four months prior to the surgery and I booked my three week vacation to cover the surgery and recovery. 

A week or so later on a Tuesday evening at 6:45 the Dr called, he proceeds to tell me a have a facial schwannoma.  He said it was time to book an MRI and he wanted to see me.  I went to see him.  I still suffered massive headaches, double vision at times and some palsy.  He couldn't understand why I had all of these problems since the facial nerve is a motor nerve and not a sensory nerve.  I was at a loss.....so I started researching on the Internet.  Finally I had the MRI and than I had a call back 6 days later.  I was devastated.  This time contrast was used.  I had my follow up with the ENT and than we washed his hands of me and sent me to a neurosurgeon.  He told me I needed another operation and he would be assisting.  I saw the neuro, he was PLEASANT!!  It was overwhelming and I needed another appointment with him because I was in shock and had many questions that needed answering.  When I went back for my appointment he got me mixed up with another patient "because his Internet was down."  Yeah, I want this guy messing around in my brain.  I was so discouraged, I went to town on the Internet and that's how I stumbled across this forum. 

Bruce was the first one to welcome me.  I had many questions and he answered them.  Than Windsong greeted me and I discovered she more or less lived down the road from me.  Actually she lived 45 mins away.  She called me and we talk for hours.  She recommended her Dr.  I contacted him and the rest is history.  Dr Rutka took his time, did several test on me and he went thru the two MRI's I had.  He answered all of my questions and told me I'm a watch and wait because with the nerve graft my face will never be as good as it is now.  I have MRI's every 6 months.  Sadly we lost Windsong a few weeks after my first appointment with Dr Rutka.  She was an amazing researcher like Daisy May.

So that's my story........

[Dan]

Kaybo, I have only worked for two different companies and they both did hearing tests.  The first company, the U.S.Army did complete physicals every couple of years.  The company I  work for now is a Germany Sugar Factory and it is sometimes very loud.  We also have a eye test every year and because we work with food products, they every few years do other blood tests checking for deseases and TB test.  Here the health care system is alot different than in the US though.  They can't fire you if you are sick or pregnant,  a woman can take 1 year unpayed baby pause and the employer has to take them back.   

Dan in Germany

[LADavid]

You are correct, Jan.  I am writing about my entire experience -- it's sort of depressing as I do it, but the bit about how the ENT handles the news is an interesting topic.  Mine was fine -- although all along the line, everyone downplayed the severity and potential complications.  There were time I felt as though I were having a very expensive tonsilectomy.

As far as the writing, I would be alot more productive if I weren't dealing with some of the less than desirable aspects of our government.  They will be included in the chapter entitled "Villains".  And in case I didn't mention this before -- in addition to you all, the Hero's" chapter is going to include the Screen Actors Guild Foundation was has been right by my side with financial support and encouragement.  There are a lot of things ugly about Hollywood, but this isn't one of them.  They've been great to me.

David

[ppearl214]

David, can't wait to read it!!!!


Nicole, In some ways, I found out like you.  To keep this short and to the point, I was having a head MRI relative to an on-going other medical issue I have.  My old PCP (who just retired and was also my cardiologist) ordered the scan. I phoned the MRI center and asked them to fax me (to my office) a copy of the radiology report.  They faxed me the report and I sat in my office and read it, did a mess in my pants, immediately jumped online to see what the heck an AN and Chiari I was.  I got both diagnosis at the same time/same report.   Then, I got my old PCP on the phone...  many here know.... he told me my MRI report said everything was fine and normal... when I had proof in my hands it wasn't.  I didn't let on to what I knew.... I just said "thank you Dr. for sharing that with me...", immediately phoned my dad (who's in the medical profession), met him for lunch and we did a "blue print" of everything I needed to do from that point forward.

I'm so sorry you found out as you did.... I can well relate.

Please hang in there.
Phyl

[LADavid]

Kay
About those hearing tests.  Pre-acting days, I worked for 4 major corporations.  Not one of them offered a hearing test.  As a matter of fact, in the last ad agency I worked for, I complained to HR about the hearing loss harrassment I was getting from my boss.  I was told to get a hearing test to prove it -- and pay for it on my own dime.  I didn't get the chance to follow through.  Lesson learned.

David

[robynabc]

Sorry, sweetie to hear how you found out.  Why didn't they messager over the MRI?   That was stupid on their part. 

First,  there is no "easy" way to find out. 

Eric,  did not have hearing loss.  If he had then we probably would have caught his much earlier.  Eric and I were on the floor petting the dog and he was drooling.  I laughed at him and teased him for drooling and he said "That happens sometimes"  My ears pricked up and I said,  Why?  and he said he had some numbness on his face by his lips.  I didn't worry too much and we waited a couple of months to see a doc only because we didn't have the time.  Finally, saw doc and he said he had never seen that and sent us to ENT.   ENT checked hearing and it was perfect but sent us to MRI anyway.    I swear it never ever occured to me that they were looking for something like this.  I never, ever thought that a tumor in his brain would cause this.  I was never worried that he was having an MRI.  It never ever occured to me. 

The docs called us and asked us to come in a couple of days before our actual appointment.  I asked if there was a problem and they said no just scheduling.  THe morning of  his appointment, Eric was at the skating rink a few blocks away and I went over to see him and he was sitting in the middle of the rink and said he was having trouble skating.  Still never thougth about that.   

When we walked in for the Doctor we were making jokes and said "GIve us the news"  laughing.   Then we saw the look. 

Our doc was great and already had an appointment with DR. Jenkins for us.  Our appointment was on a Friday and she already had us going to DR. Jenkins on Monday.  It was hard for her I know but she handled it great.  She told me later, she didn't expect it to be an AN either.  But they did everything right and we are grateful for that.

Just one other thing.  I wish they would change the name of mengioma.  That oma sounds like cancer.  That was the first thing I thought of.  It was terrible but our doctor was great. 

I remember trying to minimize it saying that the doc she was sending us to was a ENT.  And that it wasn't a serious surgery.  Takes some time to process.

Once again.  Sorry you had to find out that way.  I am sure it was not intentional but they should be told what it did to you.  Glad you are well.

Lord if we had seen Eric's MRI before the doctor I don't know what I would have done.  His was over 4.5 CM and when you looked at his MRI the tumor took over like half his brain.  There was no mistaking it.    It was hard enough to look at it after the doc told us. 

Robyn

[mema]

I suffered for 3 years with vertigo.  Even had a MRI(without contrast) which showed nothing.  Made a remark to everyone"that at least its not a tumor".  A year later hearing  loss took me to an area ENT.  After the hearing test he ordered a MRI (with contrast).  Rescheduled me for one week and had the results sent to him.  He didn't go into alot of detail about the AN just sent me to a neurotologist.  I remember getting to the car and going back to ask him how would they fix this.  He said they would go in behind the ear .  He acted like it was no big deal, so I figured it wasn't.  The neurotoligist went over my options vying for surgery.  He went over all the possible side effects of surgery.  My husband and I got in the elevator in somewhat of shock, and looked at each other and said "What did we just hear"  Then panic set in.  I'm so glad that I was in the dark at first.  I wouldn't of wanted to see the report on my own.  But now 2 and 1/2 years later I go back to the radiologist for my report before I go for my annual checkup with the neurologist.  I want to see if there is any growth. When I first went on the  ANA site all the posts were 3 to 5 years old.  To this day I don't know what I did not to get a current forum.  After my treatment I found this site and windsong was my first contact.



mema

[calimama]

Nicole,

What a shocker! Lucky you had mom to lean on (and your little buddle of inspiration of course!).

I had a long delay... three weeks past MRI and i was at the doctors office (i had to call and say...hey what's up with MRI). Like you, i was thinking all was well because (in Canada anyway) "no news is good news". I remember telling my manager at work that i was still waiting to hear back from MRI and he said, oh don't worry, if something was wrong, they would have told you! NOPE.

So there i was with ENT and he says "we have to talk". my blood went cold. he said, we ordered the MRI to rule out this tumor and it turns out that is what you have. Then we looked at the scans and ran through the treatment options. I was in total shock. I said to him... this is crazy, i feel like i am watching a movie or something. He assured me it was quite real and things like this happen to people all the time. BUT NOT ME  i thought. i was wrong!

I am glad to read that your surgery went so well and your face is working fine. Mine is not, but i feeling grateful all the same and hopeful that all will come back in good time.

Take care!

Trish