ANA Discussion Forum
AN Community => AN Community => Topic started by: Captain Deb on November 27, 2006, 04:27:22 pm
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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 8)
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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
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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
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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.
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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
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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
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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
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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.ÂÂ
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.ÂÂ
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.ÂÂ
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.ÂÂ
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.ÂÂ
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.ÂÂ
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
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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
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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. ÂÂ
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). ÂÂ
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. ÂÂ
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
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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
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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
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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
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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
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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
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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!
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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 ;D
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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
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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
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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
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  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 :)
 ÂÂ
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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 ;D
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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
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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:
(http://image1.frappr.com/pix1/i/20060516/a/7/c/a7c96d3a2ced236e162c08d5681e9e340_mid.png) 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: (http://image2.frappr.com/pix2/i/20060517/8/d/e/8dea969e9441d6fc38f7613961a4e3000_mid.gif)
Fun times!
Jeff
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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
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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
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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
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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-up�! 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 had�. 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!!
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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
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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
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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
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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
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That's what I'd like to know! Is it because of the cost?
Paul
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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
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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
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Patty,
 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!
    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.
 Paul
 ÂÂ
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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
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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 8)
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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.
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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
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Thanks for starting this thread my dear Captain.ÂÂ
It's gettin me Irish up, it is. I better settle it down a bit in case the reporter calls.  ::)
Kathy
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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
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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
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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.ÂÂ
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
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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).ÂÂ
 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. ÂÂ
 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
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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. :)
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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
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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
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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
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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
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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
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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
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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
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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 ???
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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.
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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)... ;)
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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.
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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 ...
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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.
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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