Poll: How many of you were misdiagnosed?

[Crazycat]

I think this kind of condition is easy to misdiagnose due to the varying symptoms and especially without the conclusive proof that only an M.R.I. can offer. Take it from me! I went just about as long as possible without proper diagnosis and treatment. By the time I had broken down and started to see doctors, I was telling them that I may have an Acoustic Neuroma. They would only nod in that it was a possibility.
I ran the gamut from thinking I had a blood sugar problem to a disc subluxation to having had a nervous breakdown to having some form of M.S.
One guy, an ENT offered me some prescription strength sinus medication out of not knowing what else to do without a CAT scan or an MRI. I was the one that had to request Meclizine or Antivert that did nothing for me but knock me out.
  The point is nobody is going to give you a straight diagnosis without an MRI. There are many diseases and conditions that can mimic the symptoms brought on by an A.N. Also, I think the last thing any doctor wants to do is to scare a patient unnecessesarily by incanting the term "brain tumor" when it may not be the problem at all. I went for 6 years playing guessing games. Once I had the MRI though, proper steps in the way of treatment began being taken the very next day!

     Paul

[Sue]

Then why in the world don't these doctors do an MRI sooner?  If the insurance will pay for it, then what's the big deal. Why don't they rule out the worst thing first!!  I don't get it.  This is just goofy, if you ask me.

Sue in Vancouver

[Crazycat]

That's what I'd like to know! Is it because of the cost?

      Paul

[PRussel]

I suspect I had the AN for many years (possibly 10 or more).  I would have strange dizzy spells (while gardening, while driving, while showering) and felt nauseated most of the time.  I complained to my GP that I felt tired all the time.  I had chronic sinus infections and would have the "full ear" feeling which was really aggravating.  I had headaches daily.  The GP told me that the ear thing was caused from the sinus infection and would go away and it always would.  She said the headaches were sinus headaches.  She said I was getting older and would feel more tired.  She said I was probably getting overheated which was causing the dizzy spells. Then after a period of time when I was feeling particularly sick at my stomach all the time, she finally ordered an IVP and ultrasound on my abdomen.  They found gallstones.  I had gallbaldder surgery and the sick feeling was better but did not go away.  Nor did the dizzy spells.  That doctor retired and I had to find a new doctor.  I had my first "introductory" appointment with him and complained of some numbness in my right leg and arm and constant twitching in my right eye.  I also told him that I was working long hours and wondered if that could be causing the numbness.  He tested my reflexes and said they were weak on that side and that we needed to keep an eye on that if it didn't get better because it could be something "neurological."  Then a couple of months later, when I suspected I had another sinus infection, I scheduled my second appointment with him.  When I went in complaining about my "sinus infection" with dizziness, nausea, fullness in the ear (I thought I had fluid in my ear),  he asked me if I also had headaches and when I responded affirmatively, he immediately suggested I have an MRI.  He told me right then and there that he suspected that I had an AN!  I dismissed it--I just couldn't have a brain tumor!-- and talked him into letting me try a round of antibiotics.  He prescribed the antibiotics and told me to come back in 2 weeks.  When I went back, the fullness in the ear was better but not totally recovered so he insisted I have the MRI.  There you go!  The MRI revealed a 10mm AN already protruding into the CPA.  After 10+ years with the other doctor dismissing my symptoms, I was almost convinced myself that I was imagining all these things.  The new doctor diagnosed my AN after 2 visits.  Amazing!

Patty

[tony]

Note to Jeff - sorry to hear of your troubles the only "out"  for the earlier
docs is the scarcity of the condition - they may never have seen one before
It llooks like you are in more experianced hands now
Regular checks and MRIs plus a genetic screen is about
the safest way ahead
Best regards
Tony

[Crazycat]

Patty,

 Ã‚  That's quite a story! It's amazing that the thing hadn't grown larger than 1 cm after all that time! My first indication was left side hearing loss starting in 1999 or so. In 2000, chronic lightheadedness.Then, in January 2002, double vision, all day, every day, until catastrophic equilibrium failure in 2005. So, between 1999 and 2005 I was running around complaining and describing my ailments to people and gathering information via the internet, all the while with people chiding me and laughing at me. They laughed at me because I didn't smoke or drink and jogged 5 miles a day and took care of myself and, as I gradually became ill, became especially mirthfull and full of themselves. I had no insurance, so it was really my own fault. I hedged and held back as long as I could until I was at death's door. When I started seeing the doctors before having the coverage it took several visits to get them to start talking MRI.
 I know this is off the point but I have to say, getting sick like I did has it merits and may even have been a blessing in disguise because I got to see who my real friends were; it was like having a ringside seat as both observer and participant in what was happening.
I suppose the big problem with me was not having the insurance to begin with. The doctors know all this (about your coverage) before they even enter the exam room and will be hesitant when having to order such exorbitant tests. One doctor actually did order an MRI for me. The hospital, upon finding out that I didn't have any insurance at the time, called me and cancelled the MRI date. Luckily I obtained free care at an even better hospital and, as luck would have it, the MRI they scheduled for me fell on the very same day that the cancelled MRI - at the other hospital - was going to be on. I'll never forget the day that other hospital called and threw the switch on me because it was so cold-blooded. They never even bothered to apprise me of a free care program - which all hospitals have, and that I well qualified for. I'll never forget how they did that to me; how sick and how scared I was at the time. Maybe it all worked out for the better with me ending up at Mass General. No complaints there!

 Ã‚        I have a friend that is dying from prostate cancer. He's had the symptoms for years but hasn't been able to obtain health insurance until this year. He was working as a carpenter in the Hawaiian islands. He was telling me that, when he began getting treatment, there was a special medically equiped, private plane that shuttled him over to Honalulu to get to a hospital. That little 15 minute jaunt cost $6500!! That's totally ridiculous and no one should have to shell out that amount of money for a short plane ride - insurance company or no insurance company.
Stunned, I told him you could buy 6 round trip tickets from Boston to Hawaii for that price!! And we're supposed to take this insane, phoney, profit-driven crap seriously? I'm telling you, with these prohibitive, insane prices, it's a miracle any of us are allowed to get through
the system, even to have a wart removed. Sorry for ranting a bit.

 Ã‚  Paul
 Ã‚   
 

[Denise]

Deb,

I was never misdiagnosed, just never seemed to think my issues were of any serious nature, this is my story:

In Mar, 2005, my boyfriend had a serious snowmobile accident, he hit a tree, snowmobile blew up and he had a dislocated shoulder and shattered wrist. He was in the hospital waiting for surgery, when they were prepping him they asked him if he had acid reflux, he said no, but she does.  So they all proceeded to get on my case about seeing a doctor.

I went to my GP the beginning of April for acid reflux and while in there he asked if anything else was bothering me.  I told him my hearing is bad on my left side and I have some numbness on the corner of my mouth.I didn't tell him about the lightheadedness or nausea. (Hey he doesn't need to know everything, ha ha)  He did a hearing test determined I had 90% loss then said I think it could be "a pinched nerve" lets do an MRI of the brain. So he scheduled my MRI for the next week, and told me to make an appt with the ENT down the hall. The first available appt with the ENT was two weeks later so I made the appointment. In the meantime I had my MRI, my GP called me later that same afternoon and said, it's a brain tumor like he thought.  I thought WHAT??? BRAIN TUMOR???, you said pinched nerve in your office. (I figured pinched nerve, no big deal, give me some drugs and I would be back on my feet in no time.) I was so upset I couldn't talk to him so he talked to my boyfriend. My GP had rescheduled my appt with the ENT for the next morning.  We picked up my MRI pictures, went to see the ENT and was immediately referred to Dr. Levine at the U of MN.  He was on vacation, so I had to wait two weeks to see him.  During that time I went to Las Vegas, looked like I was drunk even when I wasn't. Didn't have fun, too worried about this thing in my head.  Finally saw Dr. L, he said the tumor must come out sooner than later as it was large, so, called my family in TN, they freaked out, started making plans to come up to MN and the rest as they say, is history

Surgery 34 days after my MRI, no other option (would have liked to have done radiation), 4+cm tumor removed. During surgery my family was told the Denise you saw this morning is not the same Denise you will see tonight.  He told them, my tumor was emeshed in my facial nerve like speghetti, had to be cut, no choice.  So I have permanent facial paralysis, not fun, but finally adjusting to the new me. Recovery has been a long hard road.  I think I am finally getting the hang of it, although, in the process my family has practically disowned me.

This whole ordeal was a shock to me and I was literally unprepared for the results of my surgery.  People say at least your alive, and for a while I couldn't see how that was a good thing, looking and feeling like I do.  I wish I hadn't tried to be so "tough" and my own doctor for so long. I went about 2-3 yrs with hearing loss prior to my being "forced" to go to the dr. and "dealt" with the lightheadedness on my own, made up my own excuses. And, I ate Tylenol  like it was candy for my headaches which i was sure was caused by stress. 

As Capn Deb says "That's my story and I am stickin' to it!

Denise

[Captain Deb]

WOW!!  This whole thread is astonishing to me. I can relate to folks ignoring their symptoms as I did,  or writing them off as "old age" or too many rock concerts, diving, etc, but to have MDs pass them off as psychosomatic is unconscienable.  Also isn't it common medical practice to rule out the "big stuff" before focusing on minor problems like sinus infections or ear infections when they have been ongoing for months or years?  Its all about cost, cost, cost and not the well-being of the patient--not all the time, I'm sure--but it happens more frequently than it should.

 50 years from now they'll be scanning  people routinely and doing genetic testing at birth or before and treating the "markers" in childhood. At least for those of us fortunate enough to live in "developed" countries.  That is if we don't nuke ourselves to extinction first!

Thanks for sharing your stories.

Capt Deb

[Pembo]

Another misdiagnosed story...in 2001 I went through 6 weeks of dizziness. The doc said labryinthitis but things didn't add up. I complained for weeks but the dizziness did go away. Fast forward 3 years, I had facial numbness, first doc said sinuses, then the dizziness hit, again sinuses. But I felt horrible, I was tired all the time, I had some ear fullness. I ended up in the ER after a very scary bout with vertigo. I had a CAT scan and the dx was sinsuses. My doc tried lots of sinus stuff and finally 2 1/2 months after the numbness started I was sent to an ENT. He looked at my CAT scan and "thought he saw something" and ordered the MRI. I brought that MRI home with me and there was definitely a big "something" there. Had the MRI on a Sat, saw the ENT on Mon, met the surgeons Tues and Wed, surgery was 3 weeks later.

After surgery I pieced everything together...I had suffered dizziness, I had gi problems, I had shoulder pain, my eye twitched often. All of this was AN related. When I first had the dizziness in 2001 I wish the doc had ordered an MRI. I'm positive it was the tumor and maybe it wouldn't have grown to 4 cm. I'm sure I had this thing during 3 pregnancies and there is evidence that they grow more actively during pregnancy.

[Dzimy]

My story is so like all the others.  Fluid in middle ear, allergies and finally a trip to a ENT.  This resulted in a positive way.  The ENT sent me to an audiologist.  They determined such a strong hearing loss on the left side that I bought a hearing aid.  This helped greatly with my hearing.  But the hearing loss started in 1996 and now it was 2006.  As my headaches got extremly worse, tinnitus kept me awake all night and vision problems began I saw a retina specialist.  Had him stumped but he talked with my GP and ordered an MRI in July 2006.  This resulted in the discovery of my AN.  After surgery vision was still a problem so I see a neuro opthamologist who has determined  the AN caused a blood clot.  I have since found out that the audiologist seen in 2004 recommended in there report I have an MRI.  At that time I had an HMO insurance so I suppose they just filed that form and AN continued to grow.......that make me angry.  I just know that early discovery my AN would maybe have meant continued hearing in my left ear.  Possibly a different approach would have been taken.
I am recovering quickly and at least I found the best Drs available as I went through this.  Donna

[Obita]

Thanks for starting this thread my dear Captain. 

It's gettin me Irish up, it is.  I better settle it down a bit in case the reporter calls.   

Kathy

[Crazycat]

Wow, incredible stories from everyone! It's so good to have these tales archived here on the forum for others to read and learn from as they discover this site with all the questions they have.

         Paul

[Raydean]

6 weeks prior to discovery of the tumor.  Chet had a work related accident (not caused by the tumor) in which he broke his ankle, hit his head, and lacerated his arm.  As the month progressed I repeatedly
mentioned my concern over a head injury.  At first the Doctor stated concussion, then post trauma concussion.  During this same time period his orthopedic surgeon saw balance isues which he attributed to Chet being a drinker.  (he isn't) bases onhis looks and field of employment. It wasn't till Chet had severe headaches with blurred vision that a CAT scan was ordered.  First available appointment was 2 weeks away.  On the day of discovery, CAT scan he began to decline rapidly and became a very serious situation.

I strongly feel that the medical doctors involved at the time allowed the insurance companies, including the Labor and Industries to dictate there protocal, rather then what was best for the patient.  There's no doubt in my mind that the Doctor's failed us.

An earlier diagnoses, even a couple of weeks would of allowed us the time to place him under the care of a regional center of excellence, rather then receiving treatment on an emergency basis.

The cost of the CAT scan and MRI was definitely a factor,  makes you wonder what they think a life is worth.

Best to all
Raydean

[Dani]

My problem seemed to start on a camping trip one year...we were up around 6,000 feet altitude.  I started getting this buzzing in my head and especially in my right ear with vertigo and nausea to go with it.......that came in waves, but after I sat or laid down for awhile it went away.  Only to return at later times.  Then all that stopped and I just had a noise in my ear and a hearing loss.  Put off going to the doctor thinking it was probably some sinus thing or something to do with my ear not equalizing after our camping trip.  But my hearing got worse, and I just had the feeling that some thing else was wrong with my ear that was more serious.

I went to my GP who ask me a few questions.......took about 2 seconds to look in my ear......I as well as some of you was told I had fluid in my middle ear.  The doctor gave me antibiotics and nose spray with steroids in it.  She said it would take a long time for the fluid to get out.......well I waited about a year and still had the same hearing loss if not a little worse.  Went back and she said there isn't any fluid in your ear.  So she sent me to an ear specialist.......

When I made the appointment they said I needed the audiologist to check my ears first before my appointment.  Well the test went pretty bad....I couldn't even make out what she was saying to me through the microphone when they put white noise in my good ear.  My appointment with the doctor at her office was about 3 weeks out.....she gave me the names of some ear specialists and told me to try to get in as soon as possible, not to wait. 

So anyway the ear specialist set me up for an MRI, which I had 2 days later and I they found this AN.....he said it was about 1/2" in size, which I have found out since is about 1.27cm's.  He wasn't real happy about the size of it, but said since we have no idea the growing pattern, he wanted me to wait 6 months for another MRI...so we could get an idea what this thing is doing.  But also told me to let him know if I have any other symptoms in that time.  So here I am watching and waiting.  I am so happy I found this website and all you special people.  I finally feel that someone understands what's going on and I'm not totally alone in this miserable situation.

Thanks so much to all of you,
Dani

[flier58]

Hello my fellow ANers,
My story is not about misdiagnosis.  Actually my Drs. should be thanked for pushing me to follow my instinct not to ignore it.  I first noticed slight numbness in my upper lip in March of 2006.  i also had craked dry lip that was kind of unusual because it was only on one side and did not go away for long period of time regardless of large and often aplied amt. of vaseline which usually helped within 2 days.  I ignored both symptoms blaming cold weather and dry air inside - after all winter in Chicago is not much fun.
As to the numbness - I had an extensive dental work done on this side so I attributed numbness to that.
In july I had another dental appt. to clean teeth done by higenist but I brought the numbness to my dentist attn. along with sore tongue on the same side-a symptom that I developed in the meantime.  Knowing that I am an ex-smoker and not finding anything upon inspection, she referred me to see oral surgeon. I made it there in Aug OS made a panoramic picture of my head, did not see anything that could cause these symptoms, which made me very happy. I was ready to dismiss the whole thing but she said that I should investigate it more thoroughly because my body is telling me something and should not be ignored. OS contacted my DDS and I got a call from her to request MRI from my GP.  I had an appt. scheduled for my annual check up a week later and interestingly before I even opened my mouth about the symptoms or MRI, she asked me to walk heel to toe as I stumbled while getting up from the chair to seat on the exam. table.  After telling he about OS/DDS request she immiediately ordered MRI with contrast just to rule things out.  Well, there it was my 2cm AN which my GP never seen in her practice and admitted even she needs to look it up for more details.  She  arranged for appt. with NS. I just remember the numbing feeling as I called for a ride home because I did not feel like public transportation (my doc. is Downtown Chicago a nightmare with parking, great for public transportation). 
  By the way the same GP told me a 1.5 year before to do a hearing test as I work in a very noisy enviroment.  I have promptly ignored and forgot about it.  Oh how I wish I did what she told me to do.  There is a good chance my AN would be discovered then and trigeminal symptoms that sent me to MRI probably would not occur .  They are actually the most bothersome for me.  
 Ã‚ Just a reminder I am almost 3 weeks post CK, doing well, only mild trigeminal symptoms which tend to get worse with fatigue.  I am just so gratefull for this site and the wealth of info that I found here and on AN archive site.  Thanks,
Flier58