Poll: How many of you were misdiagnosed?

[tcrnko]

My story is not so different than others.

No misdiagnosis, but rather i have frustration with the medical system that takes so long to diagnos a problem when the tools are available. 
After fighting with the hearing loss to a point that I needed and audiologist, I was given an appoinment 30 days away.  I forced my way into the system by being in the right place at the right time and got seen in 7 days rather than 30.  But I could not speed up the 30 day wait for the MRI.  Even though I told the schedulers that we were ruling out a brain tumor, they were unimpressed.

I have an opinion. (As do others)

Since American medicine is controlled by insurance companies, the dollar has become more important than the patient.
The only sure way to speed up the system is to become an emergency.  Emergency Departments cannot refuse to treat you, but not all have MRI capability, and MRI's are not considered emergent diagnositcs.

We need as a population to find a way to increase the availability of medical care.  And we need to make more available speciality services that can determine a diagnosis in less that three months.  With the advent of increased technology, all of this should be becoming easier, rather than more difficult.

Being an ER Nurse I understand the desire to stereotype.  But having acquired this new diagnosis, and facing the future, I have developed a greater tolerance and new found empathy for my patients.  Hopefully, my example will lead others in my profession to do the same.

[Larry]

Interesting summary if I may.

Delays in Oz can be similar to those faced in the U.S but as all medical stuff is so expensive in the U.S - insurance companies control matters. Now, when I recently got pneumonia, i went to the emergency at the hospital (had a huge waiting list of patients in the waiting room) and mentioned that i had breathing problems and they took me straight away.

My recommendations for newbies is:

Seek out a hospital with a fairly recent MRI machine. Fake (unless real) breathing difficulties and also severe headacxhes. They will check your lungs and they will be clear but say that the breathing problems are caused by the headaches. You will get attention and insist on an MRI coz you have endured this pain for weeks.

You do have to "think ouitside the square" a little, otherwise as we have seen, it doesn't take a long delay to actually have irrepairable damage done.


Laz

[tony]

Note to Denese
Sorry to hear of your troubles and I appologise I maybe treading on sore toes here
Basically whilst many of us have taken quite extensive damage from AN or treatment
amazingly it is often the mental angle which is the worst
I dont blame anyone who is in this situation - its hardley surprising
Equally amazing, is how poor the medical services are at recognising
the survivors plight - they seem to think if you walk out of hospital
all must be well (its often just the beginning)
Basically if you (or any of us) have suffered successive and repeated
trauma, there are outcomes, and you can get assistance to help with them
My suggestion is you now spend so time and effort in
the healing process
Best regards
Tony

[Denise]

Tony,
Thanks for the kind words.  I appreciate them.  I did see a counselor for awhile, which helped.  I realized I have alot of anger about my situation, and I have learned to direct that anger in the right direction.  Which is not at my family who are innocent victims of this situation and are only trying to help.  As I said in my previous post, I think I am finally adjusting to the new me.  I sat down and made a list of the good and bad, (I know sounds geeky) but it really helped me, also I have been keeping a journal since my diagnosis. When I get really down I read it, it also helps me see how far I have progressed. Again, thanks for your comments.

Denise

[Obita]

I am bumping this up in case there are any newbies out there that have been misdiagnosed.

I have not heard from the reporter I wrote to but here are lots of stories for Brendalu's reporter.

Heres to AN awareness in 2007!!!!!

Kathy

[ppearl214]

Amazing.. simply amazing how many were misdiagnosed... and like many of you, same here.

Get this... first diagnosis was Fibromyalgia!  Then came my VIPoma diagnosis, but still no explanation for the head issues.  So, since VIPoma can be in the hypothalamus (did I spell that right?), they do a head MRI to look for it there, as well as blood vessel contriction issues (based on the headaches I complained about)... and lo and behold, I get my double whammie of Chiari 1 Malformation AND my AN.

5 years of searching for answers... too many insurance dr office and Rx co pmts later... go figure, eh?

Phyl

[marystro]

Hi Capt,

I am not sure if I was misdiagnosed or just being ignored.  When I first found out about muffled hearing last summer, I went to see my company doctor due to convenience.  He told me to come back in a few days if it's still not cleared up and thought that it was some sort of virus.  I didn't go back because I was so busy.  Then the muffleness went away a few weeks later but tiny hissing sound started sporadically.  I went back to see the same doctor in a couple of months for my physical.  Told him about that.  He gave me an ENT business card as reference but did not push for appointment.  I kept that in my purse all along.  Unfortunately I didn't get around to call until a few months later.  The ENT sent me to audiologist who cautiously suggested for a follow up since she found out I had about 25% hearing loss.  My ENT called and told me that he was ordering an MRI.  He was actually quite upset about not being able to get it sooner.  MRI in 2 weeks.  Friday I had my MRI.  The technician had a strange look after the MRI and did not say anything.  He was all cheerful before the MRI.  Monday (July 3) I got a call from the ENT and was told I had a "growth" and needed specialist.  I started my AN journey then...

The entire discovery actually took almost year from symptoms to diagnosis.  It was probably a combination of my attitude thinking that it was a just virus and things would taking longer to heal or just getting older.  The company doctor also did not help in this situation to instill a sense of urgency or thoroughness.

Lessons learned - I cannot take anything too light-hearted and should take my health care in my own hands!

Mary

[kat]

Hi everyone

My AN was found by accident really ! I was diagnosed with a perforated eardrum which I though to be just a build up of wax
since I felt fullness in my right ear accompanied with loss of hearing and tinnitus . It all came on after a really stinking cold.
The eardrum healed and about 6 months later I began to wonder why my hearing had not returned back to normal and made an appointment to see my GP. He then referred me to see an ENT specialist who then thought that I should have an MRI scan
which I cancelled twice since I was on an extended holiday . I was not at all concerned since I had learned to live with the iffy hearing and tinnitus and thought that the MRI was just a box ticking exercise . I finally had it in June 04 and it was about 3 weeks
later that I had the appointment to give me the results of the scan .  "This is not what you want to hear" she said "you have an
Acoustic Neuroma a benign brain tumour . It is not going to kill you and wait and watch might be an option" She then promised to send a leaflet about it since she did not have it there . She did not know the size of it at that time which turned out to be 2.2cm .
 It  was only after the leaflet arrived that I took the whole thing seriously !  After the initial panic we then got on the internet and
researched all the various treatments available . All in all it took about 11 months from the diagnosis to my GK in Sheffield .This was mainly my fault since I was not in any hurry and as it turned out my AN had not grown during that period .  Since my AN has been a bit boring with minimal symptoms I do not know how big it could have got before I would have really got concerned . I suppose I was lucky to have the perforated eardrum or I might have found out too late .

Regards Kat

[mimoore]

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

When are things like this considered Medical Malpractice?
Old post but interesting.
Michelle 

[Seal]

You can add me to the list.     My symptoms started probably three years before my correct diagnosis.     That fall, I had a bad biking accident, and I spent the next few months recovering from broken ribs, shoulder, and shoulder socket.     In January, i had a loss of hearing with a corresponding loss of balance.    My local doctor suggested that I go to see an ENT specialist which I did within a week or so.    The doctor gave me a once over and announced that "he didn't see anything wrong" with me, with the exception of a piece of cotton stuck in my ear.    There was no mention about reasons for my loss of balance nor hearing other than the fact that "I was getting old"!!!!

Soon afterwards, I returned to my biking, and the symptoms seemed to fade away.   Now looking back, my brain was already conpensating for the balance loss and continued to do so for the next two years.    This may have been part of the reason for my quicker than normal recovery.   My brain had already recovered and adjusted to much of the loss of balance.     Finally three years later, I had a sudden loss of balance and this time TOTAL hearing loss.     After my pediatrician gave me antibiotics for my head cold, he understood that there were other problems and suggested the MRI.    He had heard of ANs, but he had never personally helped diagnosis.   I was his first one. 

My wife was so angry that she wanted to talk to lawyers and everything else.   However after getting through the process and looking back, I would have only been put in a wait and watch mode anyways three years earlier.     The end result would have been the same.     Sometimes, I think as patients we need to be more aggressive in describing our sypmtoms rather than brushing them under the carpet as I did for too long.     

[MLB57]

Hi everyone,

I love to dance--went to singles dances often and around mid 2000 noticed my balance was a bit off... Also I had this swishing sound in my right ear and felt a fullness and pressure on the right side of my face.  (About two years prior I had my first and only nasty episode of vertigo)... Anyway my PCP first ordered a CAT scan that revealed nothing--then I went to an ENT guy who ran tests (ran water thru my ears and other things) and his diagnosis was "probably and old neck injury" (what?) and when I countered well what about all my other symptoms he interrupted me and said "Well, you know we are not getting any younger" (he's about my age--I was 50 then)... He dictated into his machine that I would follow up in six months if any change (to cover his butt as I'm sure).. So I got a second opinion--when I went to that ENT and he read the first one's results he asked me "Why are you here?" and I explained everything and he did another hearing test and said  my hearing tests were not within normal range for my age and ordered an MRI which found my 1 CM rt intercanicular AN...

Having limited access to knowledge (only computer at work then) I opted for surgery in Worcester, MA (would've gone to Mass Gen if I'd known what I do today)--Neurosurgeon Dr Litofsky told my kids when I was in recovery that it was a good thing I had it removed when I did as it was wrapped around my nerve and sticky... My son told me much later that he called that first ENT jerk who finally returned his call that he should have listened to his Mom, who is reasonably intelligent and knew something was wrong. Well he of course defended himself stating tests were negative, etc.

Anyway fast forward 6 years and the AN was not totally removed as surgeons thought so I had FSR (LINAC) at Mass Geneal in Boston and just last Wednesday had my second MRI post radiation and the tumor is all black and has shrunk to 8 mm--next MRI due in 2 years (yeah!)...

So the moral of my tale is that you must be your own advocate--get a second or third opinion if you are not diagnosed to your satisfaction--as well as get many opinions before deciding on the course of treatment you are most comfortable with!!!

I believe some of these MDs like to keep their group practice costs down and don't always order the more expensive tests like an MRI...

So that's my story and I am sticking to it!!!


Regards,

Mary (aka Grammy Mary, who is "Mimi" to grandson Matthew)... 

[opp2]

I supposed I was misdiagnosed, then undiagnosed as things progressed. I was originally referred to a neurologist for headaches and flashing lights. This was diagnosed as migraine. Simple enough. It fit. Then when my lip went numb, my neurologist told me to 'come back if it gets worse'. I got an MRI while I was waiting for him to 'see me again'. That was by my request to my family doctor and then driving to the US and paying cash for it.

Best $2100 I ever spent.

[Soundy]

I got up one morning with the left side (non AN side) of my face numb and drolling out left side of my mouth... went in to doctor who thought Bell's Palsy but ordered an MRI to rule out a stroke ... the tech just told me that I had not had a stroke , it was Bell's Palsy  and  he would send results to my doctor but I was free to go home ...so home I go

a couple days later my doctor's nurse called and said that there were some irregularities on the MRI involving my sinuses and he wanted me to go see an ENT... she gives me a name and an appointment she had already set up ... it was for about 2 weeks after the MRI ... when I got there I filled out standard papers for new patient and when called back just sat waiting for the doctor ... he walks in holding my chart and as he came through the door said so you have a brain tumor ...

after picking up jaw after ground I asked some questions and left numb ... he wanted to go in and immediately remove it and would have scheduled surgery the day I saw him ... I said no thanks ... went home and a day or two later made an appointment to see my doctor and told him in the future tell me what was going on with me don't send me in blind when something was going on with me and my body and he asked what was I talking about ... his nurse was called in and admitted that she just didn't want to tell me the news so said I needed sinuses checked out ... he ripped her a new one and I had a few words to say to her myself ...
So I was not misdiagnosed but didn't' know for a while ...

I got a new ENT because the first ones knife happy attitude ...and was W&W for almost 3 years before accelerated growth made removal a must ...that blunt so you have a brain tumor from first ENT was probably the worst part of my whole experience pre-surgery ...

[michelle d.]

Wow, after reading some of these stories, I get chills....I feel like a lot of you guys, like myself, knew something wasn't right but couldn't express exactly why...you go to the doctor with some symptoms,but it's sometimes hit or miss, I guess. My symptoms just came on so gradually, maybe over 2 or 3 year time span, maybe more. Looking back and remembering, i guess it would be hard for a doctor or dentist to pick up on the real problem when the syptoms can be vague and maybe not debilitating....we just keep going about our lives, just dealing with it until it gets so bad that we have no choice but find out. I kept thinking the ear ringing and decreasing hearing were a result of bad dental work and in fact, I had 2 teeth pulled in 08, thinking it would solve my problems and of course, it didn't. (the teeth needed to be pulled, though...2 root canals gone bad) I had an ENT tell me that I was "just going deaf" and needed to be fitted for hearing aides. ("a result of going to loud rock concerts in my youth") I left there shaking my head, and didn't go back to anyone for awhile, feeling frustrated. Having a new dentist, and after she did crown work, I experienced something very odd--the novacaine didn't wear off....half my face stayed numb.  I called her the next day and asked if it was normal and she said no and she'd never heard of that happening.  I "googled" and read about people who had dental work and were damaged by the novacaine and lost feeling in their face/mouth,no taste, some forever! I sort of freaked out, but thought I'd wait it out to see. 2+ months later, still numb, ringing to the moon, etc., I was getting a massage in my neck because muscles were so tight in my neck & back...a different ENT(I know)  has his office upstairs from the massage place, so I just walked up there and told them, what was going on...they scheduled me that week...ENT right away said he thought it was AN, ordered MRI next day, he called me on his cell phone on his way to work next morning and confirmed it. You all know how frustrating the whole process is: to know something is wrong but not be able to have doctor find anything. My family pract. said he has never had a patient with this in 30 + years!  Maybe more and more doctors are becoming aware of this ... the more we open up about it, the more people will know, especially doctors. I probably put y'all to sleep but I got on a roll, sorry. :O  Gotta go...michelle d.

[pjb]

I feel that I too was misdiagnosed I complained of fullness in my ear in middle of 2007 and was given an MRI from a place I never used the neurologist owns it and was given a negative report. I then went to my ENT and he said I had crystals in my ear Then in the beginning of 2009 I fainted several times and went for another MRI at a reputable place and was diagnosed with a 1 cm. tumor, I know these grow slow and I feel something must have been there and that is why I had the fullness in that ear ??

Pat