Poll: How many of you were misdiagnosed?

[Captain Deb]

Just a response to Obita's thread on AN awareness. I was one of the lucky ones--my GP found mine in 24 hrs even though a college entrance physical in 91 told me I had hearing loss and to get it checked out. Of course, being the bulletproof wench that I am, I blew it off.

Please give us an idea of how long you were misdiagnosed, any meds you were put on, and who finally ordered your MRI. Could be of help to any newbies at odds with docs or insurance companies.

Capt Deb

[Sam Rush]

 As a medical doctor w/ dizziness, I was told and agreed, with my internist that my dizziness was due to my blood pressure medication, for 1 year. Then my 4 months of hearing loss, I assumed wax was the problem, and was frequently washing my ear out. Finally stopped by ENT clinic on way to play golf to have ears cleaned.  No wax, hearing testing confirmed sig. nerve deafness.  Next day MRI showed AN.  I had never seen a case in 35 years of medical practice, which means I probably missed some.

I promised Dr. Brackmann at House that I would find him a case from my practice, but haven't yet.. 2 yrs post-op for me w/ excellent result. I don't think the delay in my diagnosis  hurt me any.i   

[Jim Scott]

Hi Deb:

Just a few days of mis-diagnosis.  As a generally healthy fellow all of my life, I tended to avoid visiting doctor's offices unless I was really sick or injured - bleeding profusely would be one of the few reasons I might seek a doctors help.  That being my attitude, I also ignored most of my AN symptoms for quite awhile (who knew?)  

Early last May (2006), I finally saw my PCP for rapid, unintended weight loss (35 pounds in six months - due mostly to a diminished appetite stemming from a loss of taste) as well as long-term one-sided hearing loss (that I foolishly self-diagnosed as being attributable to aging, listening to loud music, etc) and some occasional 'stabbing' pain on the left side of my head along with steadily-worsening dysequilibrium.  The Good Doctor at first thought I might have a 'thyroid problem'.  O.K.  So, wanting an answer for my symptoms, I immediately went for the obligatory blood test.  It came back negative for thyroid malfunction of any kind.  I was not encouraged.  My ever-diligent doctor (a good guy, really) then surmised I might have a 'sinus problem' that was affecting my taste.  On that basis, he sent me for an MRI with contrast and...Bingo!  The answer to the cause of all my symptoms came 3 days later in the form of an MRI report and films that detailed a 4.5cm Acoustic Neuroma tumor on the left - deaf - side of my skull.  It was very visible - even to me - on the MRI film.  My doctor called me, at home, from his home, the evening the MRI report was faxed to him and gave me the unsettling news.   Of everything he said to me during that brief conversation, I really only heard four words: 'brain tumor', 'benign' and 'operable'.  I grudgingly faced the harsh reality of the first two words - but I gratefully focused on the last two.  

Never one to suffer unnecessarily when a fix was in sight, I was fortunate to quickly find a very competent and experienced neurosurgeon who was almost as eager to remove the tumor as I was to have it gone.  I was undergoing retrosigmoid approach AN-removal surgery at his hand, within a month.  That was followed by fractionalized radiation treatments (26) to kill any remaining tumor cells and thus, prevent a re-growth.  I'm good now - but it could have been a lot worse.  Fortunately, my Primary Care Physician had no hesitation about ordering an MRI scan, even if his rationale for the MRI - the possiblity of a sinus condition - was mistaken.   It all worked out.

I don't consider it a real 'mis-diagnosis', but had I not had that MRI, I could have went much longer without a physician recognizing and addressing the problem (AN) and had some very severe complications from the growing tumor, which was already huge (by most standards), beginning to press on my brainstem and making me unnaturally lethargic, which, along with the also-unnatural rapid weight loss, alarmed my loving wife, who, out of concern, made the initial doctor appointment for me and accompanied me to that, and every other doctor visit I have had, since.  During and following my surgery, she stayed in the hospital for almost 3 full days, sleeping in the nurses lounge, while I was in ICU, just so she could be near me.  I believe that I have been blessed in many ways.    


Jim

[windinthesails]

Hi Captain Deb,
   About three years before mine was diagnosed I started to notice hearing loss and was constantly being harrased by my roommates about how clumsy and deaf I was. I went and had a hearing test once a year for the next three years and they didnt show any significant changes or difference between the two ears. It wasnt until a freak accident during an intramural basketball game and went to the ER, they did a cat scan to make sure I didnt crack my skull and they found it that way and then told me to get and MRI the next day. When they discovered it, it explained a lot that I had just passed off before as other problems.

[Derek]

I have a recurring ear-wax problem whereby the temp diminished hearing loss affecting both ears is usually rectified when the ears are syringed by the nurse at my local GP (family doctor) practice.

 In March 2002 the temp hearing loss in my right ear did not rectify itself after the usual syringing session. The GP then informed me that the diminished hearing loss was down to my age and that it was 'just a fact of life when you are getting on in years'. I thought that to be a somewhat strange diagnosis as I was then only 57!.

I was far from satisfied and demanded I be seen as soon as possible by an appropriate ENT consultant as I was fortunate enough to have private medical insurance cover. I saw an ENT / otolaryngologist the next day whereafter I was referred for an MRI scan which I had within 2 days and had the diagnosis of an accoustic neuroma within a few days. I must say until then I had never heard of the AN condition and I am just so pleased that I insisted on being referred to a consultant ASAP.

Fortunately the AN was (and still is) of a size whereby I can remain on 'wait and watch' subject to frequent MRI scanning and monitoring upon the advice of my GK consultant who is also a practising neuro microsurgeon.

The moral here is if you have any doubt or a 'gut feeling' that you have been misdiagnosed then insist for your peace of mind that you be referred for a second opinion by a consultant. It could ultimately save your life!

Regards

Derek

[matti]

Great topic Capt.

I was misdiagnosed for almost 2 years. I must have seen 15 or so doctors and was told I had everything from allergies to MS to Lyme disease. Everytime I left their offices, my gut kept telling me I had to keep searching. I had every test except an MRI. My all time favorite diagnosis was that I need to see a shrink, because all my symptoms were in my head. Well, he was half right LOL.  Over the last several years, I have had the opportunity to see some of these doctors (not as a patient) and asked them why they did not suspect an AN. Their response was that my hearing was perfect and that is usually one of the main symptoms. 4 out of the 15 were ENT's.

As a last resort I went to see my dentist  because I thought it might be TMJ and he told me within 5 minutes that he suspected a tumor, ordered an immediate MRI and had surgery 8 days later due to brain stem compression.

Cheryl

[Kathleen_Mc]

I was mis-diagnosed for about 4 years. I went to my GP with complaints of headaches, intermittant facial numbness, intermittant numbness of arms and legs (likely unrelated though) and insomnia. I was sent to a neurologist and given some tests but not a CAT scan or MRI and given the diagnoses of "psycho-somatic" (unknown to me until 4 years later when the real issue was found after a CAT scan , nerve conduction tests and finally MRI were done....all the same day....with the belief I would be found to have MS).
During those 4 years my GP never once questioned the diagnoses and kept giving me pain killers and sleeping pills as wanted to avoid the confrontation with me that I was abusing substances.....at that time this particular neurologist was the only one that came to our small town and was reguarded as "GOD".
Kathleen

[Obita]

When I finally went to urgent care on a Friday, after vomiting and bouncing off the walls for four days, the Dr. there gave me dramamine and told me to see my GP on Monday.  She said he would probably order a MRI to rule out a tumor. 

I did see my GP as she suggested and he told me I had fluid in my middle ear which would cause my symptoms.  The diagnosis then:  Upper Respiratory Virus that settled in my middle ear. It sounded good to me as I had had a very bad chest cold 2 weeks before. I remember being so relieved that he never mentioned the MRI.  I never mentioned my previous three vertigo attacks as they were at least 6 mo., 12 mo. and 18 mo. before, or my tinnitus.  It never entered my mind to tell him about them.  I had fluid in the ear and that was that.  I was given a decongestant and nasal steroid and started feeling good.  The fullness was still there so after a month or so, I called him and was put on Allegra and refilled the nasal steroid. 

I would probably have lived with the fullness feeling forever.  I was so glad my Dr. didn't think I needed a MRI that I was ok with it all. 

I was going to get my first total hip and my ortho. surgeon asked if I had any medical conditions he should know about.  Nope I said, just this fullness in my ear that won't go away....get to the bottom of that he said.  I won't take a chance that it is anything bacterial.  So, one more call to my GP - I told him what my ortho. said and I was scheduled to see an ENT. 

No fluid in my ear. My hearing test was bad.  MRI was ordered - AN the diagnosis.

I don't blame my GP at all.  I am sure I did have fluid in there when I saw him. If I had told him about my tinnitus and the previous "episodes", maybe I could have been diagnosed 4 months earlier.  I was the one that ignored my symptoms for two years until finally, my AN got so big it made me puke. 

I went back to my GP for my pre-op.  He had heard about ANs, knew of my surgeons (he called them "The Big Guns" at the U) but I was the first ANer he had met. 

If people and doctors knew that two or more symptoms could suggest an AN, there would be many more wait and watchers out there.

Kathy

[Desilu]

I had ringing in my left ear that would last for about a week at a time. When this would happen, I would make an appointment to see my family doctor. By the time I got in to see him, the ringing noise would be diminished or just very slight. The doctor would hit a tuning fork on the counter and then put it next to my ear. Then he would say "can you hear that?" I'd say yes and then he would look at me with the "deer in the headlight look". It was obvious he had no clue, but I trusted him (what a mistake). At one point he told me I had water in my ear and gave me some kind of medicine to clear it up. Needless to say, it didn't work. Finally after about 2 years of this, he asked me if I would like to see and ENT doctor. I told him that if he could find out what was wrong with me, then I would go. My next appointment was with the ENT, they did a hearing test and scheduled an MRI. When I went back for the results, it was then that I realized that all the ringing in my ear wasn't nonsense. I had a very small Acoustic Neuroma. I watched and waited for 5 years. Had surgery in 2005 and the rest is history. You definitly have to believe in yourself. Go with your gut. If a doctor tells you it's nothing and your gut tells you it is, then find another doctor. I now have a new family doctor, and he actually listens to me when I talk.  Ann

[Angieshubbie]

It all started about 5 1/2 years ago, I was in the hospital with my second daughter with pre-term labor.  I felt pressure in my ear.  I asked by OB to look at it.  He said that I had an ear infection and gave me medication.  It was winter, so I just played it to the weather.  I was in the hospital three time before I had her and each time my earache was there.  After that I went to my family doctor with the same thing.  It got to the point, each time I went to him it was my ear.  He looked at it and said that I had an ear infection some of the time.  Sometime he would look at it and said that it looked good, but it was cloudy behind the ear drum.  It was ponded off that my ear wasn't draining right.  He did say that if I wanted to see an ENT, he would refer me.

I went to an ENT, here in town, with the same problems to get a second opinion.  I had an ear test and I had some hearing loss reading his report ( I went and got it after I was told I had an AN).  He said in his report really nothing, but I would like to see her later to see if there is any change.  I wasn't told this and he just said nothing was wrong with me.  One of the ladies that was working there said that sometimes our bodies change after having children sometime things change.  To say at least I was mad that he didn't give me a reason.

I just put it off.  After awhile, I couldn't use my right side to talk on the phone.  I just couldn't hear right out of that ear.  It never failed my ear hurt, so I would go to my family doctor again.  I finally had enough.  I was at work and my ear hurt with pressure (feels like a cottonball) and ringing.  I went to my doctor and reminded him what he had told me that he would refer me to an ENT at the clinic.  We made an appoint a week later.  

I went in there and just told him all of my problems with my ear and who I had seen in the pasted.  He had me do a hearing test there in the office.  He told me that I had hearing loss and, he wanted me to go to an audiologist and have another test.  He told me it was a test for AN.  She had me walk the line.  I had to laugh, I said that I didn't have anything to drink.  My husband and I work in and around lawenforment.  I was hooked up the a machine and she watched my brain waves when the machine sounded with tone pitches.  At times tears were running, because my ear was so sensitive.

I went back to the ENT a couple of days later.  He told me that he thought that I was in the early stages of MS, and I didn't have an AN.  He ordered a MRI and refered me to a Neurologist.  A few days later I had an appointment to see him.  He just came in and told me that I didn't have MS, but a tumor.  It was the size of a large marble.  He said that he wasn't for sure what to do, because that wasn't his field.  He went ahead and refered me to Dr. Lasak (my doctor that did the surgery on my AN).  

When I went to see Dr. Lasak he said that it was the size of a golf ball and it was starting to press on my brain stem.  He said that I probably had my AN between 6-7 to 10 years.  He told me to go get a second opinion if I wanted, but don't wait to long.  I asked what to long was and he said a couple of months, because of where it was at.  If it got bigger it could kill me.  

I had my surgery 3 months ago, Aug 21st.  I was in the hospital for a week and was released on a Mon.  By Fri, I was taking back to the hospital with complications.  I had a blood clot on my sinse vein and it had caused my spinal fluid to build up.  I was in the hospital for 18 days.  I had my blood clot removed from my brain and had a lumbar drain put in.

Now I'm back to work full-time.  I still have the side affects from the AN and the complications.  It is so hard to believe that just a few months ago, I couldn't even get out of bed, walk, feed myself, etc.  I'm just thankful that I'm still alive.

~Angie

[krbonner]

My only presenting symptoms were a sudden hearing loss and fullness on the left side in Nov 2004.  I was 5 months pregnant, and it felt exactly the same as every ear infection I'd ever have.  My midwife didn't deal with ears, so I went to my PCP after it didn't clear up in a couple weeks.  She said I didn't have an infection, but it was filled with fluid, and I should take Sudafed.  I tried that for a couple weeks with no change.  When I called back, my PCP said she could refer me to an ENT but that they wouldn't want to do anything until after I had the baby and see if it was related to my pregnancy edema.  And it was the holidays, and I was heavily pregnant, and I just didn't want to deal with it.

When my hearing hadn't returned post-partum, I finally called for the ENT referral when my son was about 4 weeks old.  After doing my own research, I was convinced I had otosclerosis.  I saw the ENT when my son was 10 weeks old, and she called my case a "conundrum."  First task was an audiology exam, several weeks after my ENT appt.  Once those results came back, the ENT ordered an MRI which was done in June when my son was 4 months old (to "rule out" an AN).  Once she got those results, I was immediately referred to Dr. McKenna at Mass Eye and Ear, and he saw me just three weeks later. 

So, I'm not sure whether or not to call that a misdiagnosis.  Basically, no one wanted to deal with me at first because I was pregnant.  And certainly no one would've had me do an MRI, even though it is safe in pregnancy.  But once I followed up after my son was born, the AN was found pretty quickly.  So I really have no complaints - I think!  Other than the way pregnant women's non-pregnant health concerns are pooh-poohed until after they give birth.   

Katie

[Patti UT]

I was finally correctly diagnosed in July 2004. 7 years earlier I went to see an ENT because the tinniuts and headaches I had been having for several years was consistantly getting worse.( I did have a fall several yars earlier that knocked me out for a few seconds and put quite a bump on my head and gave me a whiplash. I really think it was sometime after this I started noticing the tinnitus mildly.) The ENT did a hearing test and confirmed that I did have some loss on my right side, but that it was more that the hearing test tones I didn't hear were the same frequency of the ringing of the tinnitus rather than real hearing loss. It was decided that the symptoms were probably a result of my old head injury. I wastold there was no cure for tinnitus, and given a perscription for Amitriptaline which was suppose to help with the tinniuts, sleep issues because of tinniuts and headaches. It really did nothing for me but make me feel extreemly groggy in the morning so I didn't stay on it. 3 years later, my symptoms were getting really bad.The headaches were getting dibilitating. My husband insisted I go get checked out by a neurologist. he also concured that my symptoms were probably from the old injury but just to be safe he ordered an MRI.  I was told that the MRI detected a blood clot and that I would have to have an angiogram to determine how bad of a blockage I had, and they would determine the course of action after that. I had a trip planned for 2 weeks later. I asked if I should cancel my trip and get this done immediately. They weren't too concerned with it, said it had probably been there for many years from my old injury, said it had been there this long, it wasn't going anywhere, there was no rush to go ahead and go on my trip. SO it was about 4 weeks between the blood clot diagnosis and the angiogram. The results... no bloodclot. They couldn't find anything. When I asked then, what was that they showed me on the MRI, they simply said it was probably a clot that disapaited on its own or a bad MRI. They originally thought it had been there so man yars, how did it miraculously disapaite?? And if there was a chance the MRI was bad, let's get another one to confirm nothing is there. I was refused another MRI. They told me that the angilgram confirmed everything was OK.  So I went on my merry way for 4 more years.  My sypmtoms continued to get worse and worse. Finally I made an appointment with the ENT dept with the University of utah Hospital. They sent me for an MRI that day and diagnosed me theat afternoon. I had brought my MRI films in from 4 years earlier. they showed me the AN on the old MRI and then the new MRI. It had grown over 40%. I also was told that common protocall for my symptoms for an ENT (7years earlie would have been nice) was an MRI to look for an AN. The whole bloodclot thing, they just shook their heads. In any event. I was quite angry as I always knew something was wrong. Had they taken it out 4 years earlier I would think they could possibly have saved my vestibular nerve. The tumor had completely engulfed it and it was removed completely. And I don't even want to think how much better off I would have been if it had come out or been treated 7 years earlier.

If something doesn't feel right, it isn't. Go to as many doctors as you have to to get the proper tests etc to get the answers.

That's my story
Patti UT

[Jeanlea]

The first symptom that I paid any attention to was when I noticed that I heard less clearly on my left side when I was on the telephone.  I made an appointment with a family doctor.  I didn't even have a regular doctor because I would get sick so seldom.  The doctor said my ear looked okay but it might be filled with fluid that she couldn't see.  She gave me some decongestant medicine.  I took that which caused no change.  That was in late May early June.  I continued to notice the slight hearing loss.  Near the end of July I decided to make an appointment with an ENT.  When I got there the audiologist tested me and found that I had a 12% hearing loss on my left side.  The ENT saw me.  Asked some questions such as did I shoot a gun near my ear.  (Hunting is common around here.)  I said no.  He said he would send me for an MRI to rule out a tumor.  Later when I saw the report it actually said that he was trying to rule out an acoustic neuroma!  I had the MRI on a Saturday.  I remember not being worried by it at all.  I figured it was a needless test, but because I had good insurance I would get it.  I even had the contrast.  On Wednesday afternoon the doctor himself called me and informed me of the results.  Since the doctor had some awareness of ANs he made an appointment with another doctor that dealt with ANs.  Two days later I was meeting with that doctor.  One month later I was having surgery.  And if it weren't for this annoying facial paralysis and numbness I would be fine.  I guess I'm adapting to the SSD. 

Jean

[tony]

I was mis-diagnosed for 12mths  (a bogus sinus infection)
It was a specialist ENT unit  - they were baffled (hopeless)
In the end I deliberately goofed up a hearing test
ie told them a load of fibs that created an outrageous result
They panicked and did an emergency MRI (found 1 X 4.5 cms and 1 x 1.3 cms)
It gets better - reffered to a specialist neuro unit
Waiting for them  - developed into Hydro with the pappelidemia complication
(I`d had the Hydro for 12mths  and was  going blind)
Saw my doc with the symptoms and conclusions
He concurred - I was in Hospital in 24hrs and shunt fitted a week later.....
 ...then the original MRI unit confirmed a third 3 cm tumour on the neck....
Oh for a competitent medical service....
UK is a nice place to visit - just dont get sick while your here....
Best regards
Tony

[Patti UT]

Tony,
   I have now learned to go in and make up a load of fibs or over exagerate to get them to order the MRI. My surgeons didn't want to do a follow up MRI until 5 years post op. So at 1 year I went in and told them I was vomitting all the time. Boom, MRI w/ contrast and Ct scan. SHwoe some suspicious tissue, but too soon to tell if it's regrowth or not. I'm out another year now. Going in after Christmas to force another MRI. I want one every year now.

Patti UT