Poll: How many of you were misdiagnosed?

[amymeri]

On December 28th at 4:00 pm I had sudden left sided facial numbness.  Went to my doctor right away and told her I thought I had a brain tumor (I had done the research).  She doubted it, ordered some tests and then at my insistence referred me to neuro.  They didn't want to see me for 3 months but I freaked out and a resident saw me with an attending present.  I told them it was a brain tumor, they told me I was somatic (imagining it).  I went back 6 weeks later, a little worse, still they didn't believe me.  I went back 4 weeks later and told them I needed an MRI ASAP and finally got it.  Diagnosed with a 4 cm AN on March 7th and 9 pm.

So 2.5 months of my insisting I had a brain tumor and doctors insisting I didn't.

What made me mad is that I am not a frequent flyer or complainer...I never go to the doctor (I am a nurse practitioner so I know that frequent flyers are ignored).  Now my doctor will do anything for me!

[Laura]

Very interesting topic Capt!!!

I suppose I was misdiagnosed for approximately 5 to 6 years. I had been to my PCP countless times for what they described as “fluid behind the eardrum�. I was given Cortazone shots in the rear, nose spays, ear drops, and allergies medicines and sent on my merry way. When I questioned the fact that the meds weren’t working I was told I needed to give it time or they would switch the medicine, again to no avail. I suppose over time I got “use� to the feelings I was having, as the symptoms were intermittent. I was bored with going to see my PCP and had heard a friend of mine would see her Chiro for fluid behind the ear. So I asked my Chiro and he did the adjustment. Amazingly it seemed to help within a few days. I believe that was just the intermittent symptoms playing tricks on me because they were back again in no time… with a vengeance. My mom had just went and seen an ENT for a nose problem she was having so I asked her for the name and number just to get a specialist point of view. I called my PCP and they gave me the referral. I met with the ENT and explained everything that was happening and he, quite frankly, told me he would be AMAZED if my hearing did come and go. He did a hearing test and found that I had 30% hearing loss on my right side but the left was normal. He wanted to send me in for an MRI to rule out the “possibility of a growth� but not to worry because they hardly EVER find anything. It’s just a precautionary measure. Well, congratulations Laura, you are the proud owner of an Acoustic Neuroma. And guess what, one of the symptoms is intermittent hearing… He didn’t look so good with that foot in his mouth! LOL

[Cheryl R]

I ignored my symptoms of ear fullness,tinnitis and some hearing loss as my oldest daughter was getting married and we were busy with that and i figured it was allergies.   I got a ENT referral after the wedding and was told I had Menieres.     Come back if I had any sudden hearing loss which I never did.          I asked if it could be a tumor and he said I just get anxious!     I rather ignored the symptoms as was planning a major vacation.     I lost my hearing so gradually that I didn't even realize it was gone.  I mentioned to my PCP the next summer that things seemed worse and I was questioning tumor and he ordered rhe MRI and the rest is history.            It was a year and day later from the ENT appt than I had the 8 hr surgery for my "anxiousness".                      I was able to get an apology from  the ENT eventually as had to take an elderly aunt to him.    He called her anxious over some health matters too.    GRRRR!   
The doctors where I work had their awareness of AN's raised past my surgery.   One doctor even had his own MRI done due to some hearing loss.   Luckily he was ok.
                                                   Cheryl R

[Dealy]

Misdiagnosed by ENT even though I had been seeing him for over 6 years or more after my first AN surgery. Lost sound in higher frequency's-lip started twitching slightly-coldness in mouth-frequent headaches. This was six months before my face went numb. This is the only way it was found when entire right side of face went numb. MY ENT was on top of nothing. Dis counted all the obvious symptoms and never recommended an MRI all the years I had been seeing him.Ron

[Brendalu]

I guess I truly have a great PCP who really listens.  I went in for my routine check up.  I had fallen and had several bumps and bruises.  She started asking a lot of questions.  I went for an MRI on a Thursday the following Tuesday I had my MRI contrast and saw the ENT a week later, two days after that I saw the neurosurgeon and after several appointments with them and their teams had my surgery three months after my initial visit with my PCP.  My new neurologist is a great listener too.  No misses with me.  I would and do recommend my PCP to everyone.  She is wonderful.
BrendaO

[HeadCase2]

   In 1980 I noticed that my hearing on the left side had diminished over
a two week period, and had odd crackling sounds in that ear.  I visited
my GP, who confirmed some hearing loss on the left side, and referred me to
an ENT at Baylor (in Dallas).  The ENT felt that the hearing loss was due to loud noise
exposure (Rock & Roll concerts, firearms, motorcycle racing).  And he told me
that it was not possible for the hearing loss to occur that quickly, he felt that the
loss had happened over time and I had just notcied it.  I knew that the loss had happened
suddenly, but "everyone knows" that hearing can be damaged by noise.  The ENT claimed
that there was nothing that could b done to return the hearing loss.  I didn't think
anything could be done, and I began to unconsciously make the little ajustments needed for a hearing loss
on one side.
  Jump to 2002.  By this time I had a fairly severe high freguency hearing loss on the left side, but had
always chalked it up to noise exposure.  I began to experience odd Aura events, where a arc shaped portion
 of my field of view would start flashing with a geometric pattern, for about 30 minutes.  After the fifth
such event I went to the ER.  They did a CAT scan, blood tests, etc., and ended up thinking the auras were
 a precursor to migrain.  I didn't really have migrains, but after having everything checked out
was less worried.  When the auras stopped, I stopped worrying.
  In September 2005, I had a fainting event, I just keeled over standing on the sidelines after a pickup
basketball game.  The ER found no particlular problems, and wanted me to see my Cardiologist.  The Cardiologist
 referred me to a Neurologist (Dr. Morgenlander at Duke), who after listening to all the above history sent me for
 an MRI with contrast.  The Neurologist called the second morning after the MRI to report that "You have a small mass."
 I don't remember much about that conversation now, other than he recommended that I consider having the
AN surgically removed, and refered me to the Skull Base Surgical team at Duke University Hospital (Dr, Sampson,
Dr.Tucci, and Dr. Fukushima).
  In a way, my Cardiologist was the key to obtaining a correct diagnosis.  He recognized that some odd things had
been going on that we could not explain.  If he hadn't referred me to the Neurologist, I might still be undiagnosed.
 Regards,
   Rob
PS. I some ways I'm glad that the AN wasn't diagnosed in the 1980s.  I may have been tempted to have the thing treated when techniques were not as refined as they are now
   

[Battyp]

Geesh it's amazing all we've been through!  I started with tinnitus at night, saw the gp and mentioned the rining in my ears, he did a test in the office which was inconclusive so he sent me to the ENT for a second opinion.  Mind you this all started in the middle of our 4 hurricane season!  Unlike Jim, I gained 40 pounds in about 2 to 3 weeks. ENT did test and said it was a viral ear infection.  At the time I only had a 3% hearing loss in my left ear.  Six months later I had the ear fullness, was extremely lethargic did a repeat hearing test to which I had lost my hearing and was still told it's just viral give it another 6 mos.  At that point I knew something was wrong, I pitched a fit and forced him to do an MRI two weeks later I'm finally old I have an AN that is small (showed me a pea sized looking tumor).  Sent me to Miami for consult to where I found out I had a large tumor, one surgical option and 6 weeks to get on a table as my brain stem was compromised.  Life has not returned to normal since.  Are we having fun yet?  LOL  hey gotta laugh or I'd cry

[Sue]

One year.  Treated for allergies (which I probably have), but didn't get MRI until I experienced facial numbness near my left ear (AN side). Had the sinus rinse, nose spray like so many on here have had.  No dizzyness, so that's one reason it took that long to get it figured out. Partially my fault for not returning to dr as I "blew it off" like Capt. Deb. Figured I would have to live with tinnitus. Then I realized I had some numbness and thought, "Hmmmmm, don't think that's good."  Then that got me a trip to the neurologist and the MRI.  First visit to ENT was April of '05, and GK in April of '06.  Not as long as some.  Long enough, though.

Sue in Vancouver

[Jeff]

It's interesting to read about the experiences of others. I have NF2, and although we now know that I inherited it from my father, his doctors never told him about NF2. They only told him that he was very rare to have bilateral tumors. I did see, however, my father go through 2 surgeries and adjust to life as a deaf person.

About 7 years ago, I noticed, when I got up in the night to check on my infant daughter, that I would weave and stumble in the dark like I had seen my father do so many times. I mentioned this to my family doctor who assured me that AN's were not genetic and told me that I should not worry.

I went on merrily for another year, when I developed a headache that wouldn't go away. In the meantime I had moved 1000 miles. I went to my doctor, complaining of a constant headache. He treated me for a sinus infection and allergies, and told me to come back if the headache did not subside. It didn't, so he ordered a CT scan which showed this:
The other AN doesn't show too well in this slice, but it was 2.3 cm. I had my first surgery 6 weeks later and the rest, as they say, is history.

Currently, my other AN has grown to this size:

Fun times!

Jeff

[tony]

Forgive me butting in here - ANs not genetic ?
I guess generally they are not - but NF2 can/may be
Generally little is known about NF2 - even by those in the
medical profession .. who think they do...
I am NF2 also and (sometimes) understand the issues
(its takes a brave man, or a fool, to know ALL about NF2..)
So my suggestion is :  its often best to get on a specialist NF2 clinic
they usually know what to look for, and will research the genetic issues
just a suggestion
best regards
tony

[Jeff]

Hi Tony,
Clearly, my family has NF2. My father's doctors (military doctors), in my opinion were woefully neglectful in either not knowing about NF2 or not informing my father. This is something that really bothers me. Had I known that I had NF 2 (or that there was a possibility), I would not have studied music and become a music teacher.  Additionally, my own doctor was obviously not aware of NF2. I view him as sadly misinformed. I view myself as somewhat knowledgeable when it comes to NF2. I am treated at House, and have discussed many issues with my doctor there.  My brother is treated there as well. He got an ABI this Feb. that he is very happy with. His mutation has been identified and unfortunately, 2 of his 3 children have inherited NF2. I have yet to meet with a genetic counselor, but my wife and I are currently arranging for an initial MRi for our daughter. So.....it seems that we have a handle on things for now. I do appreciate your input Tony.
Have a great day,
Jeff

[LBM]

I was misdiagnosed for years. I was seeing a neurologist at a well respected hospital where I was currently a medical student who was planning on going on to do a residency in psychiatry. (Which I am by the grace of G-d) almost done with. My only complaint was headaches. They were worsening with intensity and frequency and I was put on numerous beta blockers, calcium channel blockers, and mood stabilizers and well as any triptan you can name. I was taking triptans everyday. I had a close friend at the time who was dying of a malignant brain tumor about my age 30 and asked my neurologist for an MRI and he said "If you had a brain tumor you would be dead by now." After three years I decided to get a second opioion. I went to see another neurologist who said "when was your last MRI?" My last MRI, I never had one, the next day she called me to come in. I had a 3 cm AN on the left. Now a year and a half later my entire life has changed. I completely lost all my hearing on the left, mild left facial weakness, and awful headaches. L

[yoga52smh]

I think my first symptom was the fatigue. This was probably a year or so before I noticed that I was clumsy, had some head pains, tightness in the jaw, full ear. I also was loosing my hearing on the left side.  For months I thought it was my phone at work, or the person I was speaking to. Couldn’t make out the words, and asked them to “Speak-upâ€?! Durr, I also fainted in the shower in Dec of 03. Dr said I was dehydrated, did a EKG ? and said my heart was good. Blood pressure was low. Drink water, rest and eat some thing salty to help increase bp.

Anyway in Aug of 04, my husband and I went to a barbecue. The couple had been asking us over and we could never make it. But we went, had a great time. I knew that she had had a brain tumor and was operated on in 1987. Right before we left, I mentioned something about my crackling cordless phone and my crappy hearing but only on the left side. When I told her about the pain, fullness in the ear, and hearing loss on the left she said “you better get that checked, that’s what I hadâ€?. I was scared now. Made an appointment with my GP, he referred me me to an ENT. He ordered the MRI with contrast.  He called me a few days later to say yes, it’s an AN. About 1.5 cm.  He referred me to Mass Eye and Ear in Boston, Dr. Mckenna. I saw him and Dr. Barker in December of 04 and booked my retrosigmoid surgery for Jan 05. I didn’t know about this site and didn’t really want to research too much. I thought I want it out! And that’s what we did. It was right for me.

One thing that I remember is this time of year for years, I would have dry eye, and my left eye would water constantly, esp. in the cold.  I also couldn’t go without a hat in winter like some folks.  The inside of my ear hurt if it was cold. These were probably signs that I just never picked up on until now.  Anyway, we all had different journey’s here. We don’t want to be here, but heck I’ve met and read about a bunch of great, courageous, funny, thoughtful and beautiful people that I would never have met if it wasn’t for my An. Thank you all. And thanks to Sue, the girl that told me to get it checked out!!

[Larry]

Wow, so many distressing stories. My empathies to all. I was relatively lucky (if having an AN is considered being lucky) that i noticed hearing loss on the phone - as a bloke and never going to the quack, my wife pushed me to get it checked out. The quack thought it was a blocked eustation tube as I had flown a bit (in a plane thanks Patti)! Anyway, he said if it hasn't cleared in 2 weeks come back. Well it hadn't cleared so I went back and he referred me to a hearing specialist. This guy ran a number of tests and thought something was up so ordered an MRI - and the rest is history.

I was fortunate to see a specialist that was actually concerned.



Laz

[Palace]

SADLY, COUNT ME IN.........M.D. (not medical doctor; missdiagnosed)  That is why I'm going to bed now and facing my first "REAL ZAPPER" for the next three days.  I'm too tired to write about my experience (MD) but yes, I was miss-diagnosed for many, many years!  (or I wouldn't be going to Stanford for the CK the next three days)  I was really down tonight.......having to do with people and how they don't "get it."  (mostly a neighbor that found out and a couple of so-called friends)  We have already talked about that on this forum and how those who don't have it, think it is nothing once your TX is over.  It will never be over!  Thanks for listening; in a sad mode tonight.



Pal