ANA Discussion Forum
General Category => AN Issues => Topic started by: Nicole222 on June 19, 2008, 01:56:10 pm
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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?
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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
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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
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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
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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...
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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
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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!!
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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?
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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
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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
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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
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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 :D
Jan
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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
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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 ;D
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
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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.
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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
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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
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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!
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Incredible stories. Shye and Brenda - talk about insensitivity :o
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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.'
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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
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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
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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........
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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cindyj -
that is kind of cool 8) 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 :D
Jan
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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
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(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
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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!! :D
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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
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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
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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.
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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
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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
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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
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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.
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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
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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.
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Hi
I had my MRI on a friday afternoon when I got home my doctor left me a message to call him as soon as possible. He left me the message at 330pm my MRI was from 300to 345pm. I was still having my MRI when they called him.
I called him back as soon as I got home at 415pm he had left for the weekend. I asked his service to get a hold of him he left me an urgent message on my machine.
I didn't hear from him until Monday Morning at work. That's when he told me I had an acoustic neuroma and that he could n't treat me he gave me a doctor to call. But i was devistated finding out at work was the worst. I am bank manager I have 17 employees for all of them to watch thier leader fall apart was more than I could handle.
I ended up working 1/2 a day and went home made phone calls and found this web site it was a life savor for me.
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My daughter was only 15 (3 years ago) when we went to an Ear Nose Throat specialist because she was having balance problems and some hearing loss. Our General Practicioner more or less said "everyone gets dizzy when they stand up to fast" etc...but I didn't believe her issues were normal so consulted a EMT specialist. He in turn somewhat dismissed her symptoms, but after I pursued it, she was mis-diagnosed Meniers Disease. She went on a low salt diet etc...but the dizziness got worse. Finally she got an MRI. Well the MRI facility was all smiles and so I though all was well. I called my ENT doctor to confirm this and he said he was going to refer my daughter to another specialist. OK..this was not sounding good. The ENT also would not give me much information just enough to make me melt down and consult the internet as well....so I sympathize with your situation, sounds so familiar.
Ultimately I rejected the ENT's referal and decided on the physicians at the University of WA Medical Center. A consult with them revealed they performed this surgery approximately twice a week, every week. So I knew I had found an experienced team.
My daughter had a very large tumor, it took two surgeries to remove. She lost her hearing in one ear sadly, but her face is totally normal looking. It's now three years later...she just had an MRI the other day and there is no growth.
At the time of diagnosis I was a basket case, but honestly it's taken 3 years to finally recognize that although its nasty thing to deal with...Acoustic Neuroma's are benign tumors. My daughter is doing awesome, she is 19 now, a student at the University of WA...beautiful and smart.
I continue to hope that someday her hearing might be restored (even a little) without the use of the a device...that medical research will find ways to generate nerve cells ...etc...I know its a long long way off but I still hold on to the hope. I also know that the BAHA is supposed to be great so that can be an alternate when she is ready for it...
Debi,
Mom of Amanda.
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After having hearing loss in one ear from 1974-2001, and other symptoms developed during the years 2000 and 2001, my family doctor set up the MRI to be done on a Friday morning, May 4, 2001.
There was severe facial pain on that side, mostly in my jaw, so I suspected a TMJ problem.
After my MRI was done, I met my husband for lunch, then drove home and there was a message on my answering machine from my doctor's office asking me to come in. I figured they must have found something, to call me so quickly, so I drove to his office.
The doctor (my family physician) came in with the films to show me the 4 cm tumor. He said "you have a tumor". I was really shocked and said, "you're kidding"? I don't know why those words came out of my mouth. It's sort of comical now, as I think about it.
Reality set in as I drove home and stopped by my mother's apt to tell her. I broke down and cried while tring to talk.
I think they way I was told was fine. I am glad that I did not carry the films to the doctor's office or read the report on the way. My doctor's office was right around the corner from the hospital where the MRI was done. I think it seems unusual for a patient to bring an MRI to a doctor, but this is done now when I have my follow-up MRI's done. They give me the films and report to take to my doctor and I think it is because he is in another city.
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In July 2007, I realized I had hearing loss and scheduled an appointment with an ENT. At the time of my visit the audiogram showed that I had hearing loss only in my left ear. I think the ENT gave me a cortizone pack and said to come back for another test in a few weeks. When I went back the hearing loss was a little worse. Since I still had 50%+ hearing in my left ear she said I could just monitor it or have an MRI. My choice. So I followed my gut feeling and had the MRI. I sure am glad I did. She called me the next day to tell me I had an Acoustic Neuroma. That day my life changed. I made an appointment with a neurologist and he explained thoroughly my options and I chose surgery. Surgery was performed on November 8th, 2007 and left me with single sided deafness and balance issues. Looking back I realize that I might have had some symptoms; suspectedTMJ , lots of ear pressure/fluid, and was becoming very clumsy.
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A little late to the discusion but.......
Things happen a little slower here in england, our health system has its problems but is one of the best in the world (or so I think, speaking from experiance) I like many of you had loss of hearing so saw my GP, thinking my ear just needed a good clean out, but you all know the story, nothing there, my ear was a clear as a bell, so on to the ENT department this was about 6 weeks later ( trust me thats quite fast really) this was june
ENT then sent me for.......yes you guessed it MRI this took about 8 weeks the appointment was end of august, I was told I should expect to see the results in about .....yep, 6 weeks, ok I thought nothing to bad then, so of I trot not really concerned, they mustn't have found anything.
1 week later i get a phone call, "Mrs Bennett did you know you had an appointment today with the ENT doctor" "no" I replied, "well you should have had a letter" the lady said "no I haven't had anything, do you know there is a postal strike at the moment" I replied, so the lady on the other end of the phone made a new appointment for 3 weeks time,now feeling slightly anxious if you get phone calls that quick something is usually wrong.
So I waited for the day to come, my appointment was at 11:30am so I went to work only to find that my memeber of staff who I really needed to be there was sick and couldn't come in work, another appointment canceled, by now I'm feeling a little worried, It was now the end of september.
I came home from work one day, within minutes of being home the phone rang, it was manchester royal hospital, they made me an appointment for 4 days time as it was very urgent that they speak with me, if I wanted any information in the meantime I was to contact my GP who had now been sent all the information , as you can imagine I phoned my GP immediately, I went to see her the next day.
She told me I had a growth, where abouts it was and that i would have to have surgery to remove it, she also told me it was quite a large one but she didn't know the exact size.
When I finally got my appointment with Proff Ramsden it was the 4th October 4 weeks later I was in surgery (now that was fast).
The rest i guess is history, I felt the doctors involved handled the situation very well and with excellent bed side manner, it was just the unfourtunate events leading upto getting that appointment, which was no-ones fault but fate's
Cheza XxX :-*