ANA Discussion Forum
General Category => AN Issues => Topic started by: meanders on January 24, 2013, 12:32:58 pm
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Hello! My name is Mary Ellen. I am new to this forum and came here seeking some advice. I am 42 years old, married, with a daughter in high school and have been a registered nurse working in pediatrics and case management for 20 years.
In 2005, I noticed a ringing in my left ear and that my hearing was diminished. These symptoms took me to my PCP and once referred to an ENT, audiology tests confirmed the hearing loss. An MRI was done to rule out multiple sclerosis or an acoustic neuroma. The results were negative except an incidental finding of a Chiari malformation.
Fast forward to 2009, when I experienced my first episode of dizziness and vertigo. By this time, we had moved and I had a new PCP. After 2 weeks of dizziness/imbalance, I went to my new PCP, who diagnosed me with BPPV (Benign Paroxysmal Positional Vertigo) and I was given a series of movements to perform twice a day. The dizziness seemed to improve, and for several months I would feel "normal", but the dizzy feeling would reappear for periods at a time.
In August of 2011, I had two severe episodes of vertigo within a 2 week period. I scheduled an appointment with my PCP, who diagnosed me with Meniere's Disease. Because I wanted more reassurance and knew my hearing was declining more, I sought out a neurotologist, who agreed that this is Meniere's Disease. I received a hearing aid last year and had a series of vestibular tests performed.
Last week, I just had my yearly hearing evaluation, which revealed that my hearing is fairly stable, however I had a sharp decline in speech recognition. Previously, speech recognition was 96%. (This time, I was batting zero until my audiologist increased the volume, and even then, recognition was only at 50%). As I understand, this is a strong indicator of acoustic nerve damage and the physician suggested that an MRI would be indicated to rule out an acoustic neuroma. While in the office, my understanding was that the office would call and schedule an MRI for me. When I had not heard anything back for a couple of days, I called to remind them and was told that the physician had recommended an MRI in 8 months. This is where I feel I am in need of some assistance in understanding the reasoning of not ordering it now. My opinion is that if significant nerve damage has occurred already within a year, why would I wait and potentially risk further damage.
Regardless, I am going to insist that we go ahead and schedule this now, but I would certainly try to understand the reasoning of why waiting 8 months would be suggested.
Thanks in advance for any advice.
Mary Ellen
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Hi, Mary Ellen - and welcome to the ANA discussion forums.
Frankly, I cannot think of a reason your doctor would wait eight months to schedule an MRI for a patient he suspected of having an acoustic neuroma, unless he is assuming you don't have an acoustic neuroma. If so, he should be willing to validate that assumption, which is what an MRI scan would accomplish as well as indicate an AN, should one be present. Of course, when you call to request the doctor order an MRI, that will be the time to ask why he wants to wait 8 months. It may turn out to simply be a matter of miscommunication between the doctor, his office assistant and you. These things happen. I'm sure he'll want to accommodate your wishes and order the MRI. Please let us know what happens next. Thanks.
Jim
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Hi Mary Ellen .....
Adding my welcome to this forum, as well.
You do not say whether your 2005 MRI was done with contrast or not. If it wasn't, a very small AN could have been missed. If I am reading your post correctly, you have not had an MRI in almost 8 years. If that is correct, I cannot see any reason your physician wanted to wait 8 months (that seems like an odd length of waiting period regardless of the reason) when you are experiencing rapidly progressing symptoms.
I am with you that I would insist on an MRI with contrast now ..... if for no other reason, to check on the chiari malformation.
Many thoughts and prayers. Let us know what you find out!
Clarice
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Welcome.
I also can't imagine any good reason for an 8 month delay. Sometimes doctors get it just plain wrong.
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WoW! I'm truly grateful for the speed of your replies as well as your responses. Even with a medical background, I know with each step of this process, I have hit major learning curves, so having validation that my reasoning is solid, makes me feel much better.
Clarice, the MRI 8 years ago included contrast. Because it was negative, my ENT at the time had no explanation for the hearing loss, but was very clear he did not feel that the Chiari Malformation was responsible in any way. I was both relieved and disappointed not to have any definitive explanation, but not overly concerned with just living with some hearing loss. Now that I have developed other symptoms, I'm feeling a little more anxious for a more conclusive diagnosis.
I have requested to schedule the MRI for next week. Jim, I certainly think that your advice is sound in asking why wait 8 months/perhaps this is a mistake.... Before the nurse returned my call, she validated the information with the physician first about scheduling 8 months from now. Having the information sooner, rather than later will give me some peace of mind. Thanks again!
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Hi Meanders,
I was just diagnosed with chiari 1 yesterday after they were looking for a neuroma. They put the hearing loss, vertigo and problems with crossed acoustic reflex, hypersensitive hearing etc down to the chiari.
I was told I had labrynthitis when the vertigo started and then possibly menieres but it is all down to the chiari.
I hope you can get some correct answers - sending good thoughts your way.
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My AN journey began back in 2006, when I was at a seminar and suddenly had a bout of vertigo. I went to the ER and they diagnosed me with labrynthitis...gave me some meds and sent me on my way. The dizzyness continued, so I went and saw my pcp. He ordered and CT Scan, which showed nothing. I went to a neurologist, gynocologist, even my dentist trying to find out what was wrong with me. At times I thought I was just going crazy as no one could find anything wrong. After several weeks, I returned to my pcp and he sent me to and ENT. This woman was so thorough with her exam and immediately ordered an MRI of my IAC. That is when the AN was discovered. After delivering the news to me that I had an AN, I thanked her...she could'nt understand why I was thanking her, but I explained that I knew something was wrong with me, but no one could help me until her. My AN was very tiny....approx 3mm at the time, and after seeing two or three neurosurgeons, they all told me my AN was too tiny to be causing my dizzyness. I finally made an appointment at MD Anderson in Houston and finally found doctors that understood what I was going through. Long story short...my AN was stable for 5 years, then last year suddenly grew. Docs recommended surgery while it was still small. Its been a long 6 months since my surgery, but my tumor is gone an I'm slowly getting back to normal. I would recomend seeking out a professional that specializes in ANs or related diseases and getting an MRI! Prayers for you and hope you get the answers to your health problems soon.
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It is my understanding that an AN is slow growing. If the prior scan slowed nothing, is it possible the doctor thinks it very unlikely you have anything fast growing and that 8 months will give better diagnosis results ?
For as long as you have had your symptoms, I think you wise to press for an MRI. The doctor can always do another one in 8 months. This one could be deemed a 'Base scan' for comparison, as I think the 2005 scan is rather old for that purpose.
Good luck, and welcome to the forum.
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My two cents - since the majority of ANs are very slow growing, your doc is being conservative and waiting 8 months to do an MRI.
Jan
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I think if symptoms increase, an MRI is a good idea. Mine did and between February and July the an grew. By July my hearing had gotten worse and my head fuller. I had it out in October but I wonder if I had acted earlier might I have saved some hearing... Just MHO.
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Dear Mary Ellen,
Welcome to the ANA forum. I hope you find advice and comfort here, as we all have at one time or another. I cannot second guess your doctor however! As none of us here are doctors only very experienced patients with excellent recommendations.
I, also work in health care as an Executive Director of a family owned and operated business called Clove Lakes Health Care and Rehabilitation Center on Staten Island. Welcome once again, AN's don't discriminate----- they unfortunately grow randomly!
I have been a member here since February of 2012, and have been calmed and comforted by the members here, as I am sure you will be! It is vastly better to be among friends discussing particular treatments and options than it was to be alone and frightened (as I was in 2004) when I made my choice alone without the vast assistance I have received in 2012 from different members here.(By the way, for that I owe my thanks to the others reading this).
Comparitively, I interviewed 13 neurosurgeons and 1 radio oncologist in 2004, while with the ANA patient expert opinions and the recordings of the ANA conference in 2011
(which I ordered in 2012), I only had to reinterview 3 of my top pics in 2012 before making my choice.
Now, it's my turn to give back! As I'm sure you will see there are plenty of people here who have gone before you and plenty who will come after seeking comfort and just a little guidance to get started heading in the direction of wellness. You can "watch and wait" for only so long!
While I don't recommend dragging out your interview process you'll certainly be in good shape if you choose from 3 of the top neurosurgeons and top treatment centers across this great country of ours.
Good luck to you, keep an open mind and heart as you start your long journey. There are plenty of opinions here that's for sure!
Mike
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Thank you all for your wisdom and opinions. Reading your stories validated my feelings that this seemed a bit odd. I DID contact my physician's office and believe that there must have been a misunderstanding by the office staff. My MRI is scheduled for next week.
Thanks again for your thoughts!
Mary Ellen
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So glad you are scheduled for an MRI next week!! Just further proof that we have to be our own advocates with the medical community at times, because misunderstandings/mix-ups do happen.
Let us know what you find out.
Thoughts and prayers!
Clarice
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Just an update to say that I had my MRI today (with contrast)..... was told it will be read within a day and should probably hear from my physician within the week. Fingers crossed/prayers said.
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Mary Ellen,
I will also pray for the results that you desire.
Good luck!
Mike
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Many thanks to all for their wisdom and kind words. On Friday, I received word that my MRI was negative. It is both a blessing and a source of frustration. As my vertigo is episodic and my hearing loss is still manageable, I am truly grateful that my life has not been tremendously impacted.
I appreciate this forum and the support given to all especially in those stressful times.
Thanks again,
Mary Ellen