Dizzy for 20 months and scared

[helen2]

hello
Suddenly 20 months ago I got dizzy and it has never gone away. I was 57 at the time. I have been to many doctors- 3 neurolgoists,eye doctor,internist and cardiologist. Have had lots of blood work and physical therapy. I have had 3 abnormal ABR tests. I live alone and have also given up driving.
Next week I am getting a MRI in a 3T machine with contrast agent also with sedation due to my extreme clautrophobia.

It seems the doctors I have gone to have been very dismissive of me. They just kep sending me somewhere else or said to try medication. My hearing is normal so when I told them I thought I might have AN nobody paid much attention.

I have had to be my own advocate and do my own research. I am very scared. Thanks for reading this and for your support.

I live in Northern Illinois--has anyone ever been to Dr. Wiet?

Thank you

[Crazycat]

Helen,

     Is your "dizziness" lightheadedness or full-blown vertigo? I had full blown vertigo (the spins) once in my life and that was from an inner ear infection in 1983, long before my AN developed. I remember those spins gradually subsided over a two week period. An inner ear infection can linger.

     With the A.N. I went a long time without a diagnosis or care before I hit a wall. It took four years or so. My symptoms started out as left-side hearing loss that gradually worsened to constant lightheadedness to double vision. Toward the end my equilibrium got so bad I could not put one foot in front of the other yet I was in great physical condition at the time, running 5 miles every day (for years) on trails through the woods and on roads as well as weight training.

     Before my official diagnosis, I got the same run-around from primary care doctors. I even asked one of them if it could be an Acoustic Neuroma. I had actually diagnosed myself! I had narrowed it down to either an A.N. or M.S. But the only way to bear that out is by way of an MRI with contrast. So be patient and look forward to your upcoming scan because it will resolve this question that has been plaguing you once and for all. Also, don't be afraid of the MRI, it's absolutely harmless. The scariest thing about an MRI is the price and especially if you don't have insurance! But the truth is, until you have the M.R.I.
a doctor is not going to tell you what your problem is because he really doesn't know until he has all the information he needs
to make a diagnosis. You do not put the cart before the horse. This is why an M.R.I. is crucial.

     You could also be experiencing signs of Meniere's Disease. This should all be sorted out between the scan and bloodwork.

Anyway, keep the faith and good luck with your scan!

[leapyrtwins]

Helen -

not sure which Dr. Wiet you are referring to - the elder, Richard or the younger, Mark.  Richard is a very well-known doc with an excellent reputation and great bed-side manner.  He's been treating ANs - and other ear "problems" - for many, many years.  In fact, he performed the first Cochlear Implant in Illinois.  Richard is on the ANA's Medical Advisory Board and is (or was ?) an assistant professor @ Northwestern University's Medical School.  Mark (actually R. Mark) is fairly new to the profession - not as experienced and doesn't have the same bedside manner as his father.

I am a patient of Richard Wiet's long-time medical partner, Dr. Robert Battista who is also an assistant professor @ Northwestern University's Medical School.  Dr. Battista is in charge of training the new fellows for the practice (Ear Institute of Chicago) and he's in charge of the pediatric hearing program @ Hinsdale Hospital.  He performed both my AN surgery (retrosigmoid approach) and my BAHA implant surgery.

If you're having your MRI in the new 3T machine @ Hinsdale Hospital it's amazing; they were setting it up when I was there in April for my 5 yr post op MRI.

Dizziness can be caused by an AN, but it can also be caused by lots of other things - and sometimes, no one can tell you what the dizziness is from.

My dad - just turned 83 this week - has had vertigo for several years.  Despite being tested for numerous things, no doc can tell him the reason he is dizzy.  In his case, the best the docs could do is give him a Rx for meclazine (not sure how that's spelled) to combat the vertigo and dizziness.

I'm hoping you'll get some answers next week.  In the meantime, don't hesitate to PM or email me (my email address is in my profile).

Best,

Jan

[It is what it is]

Glad you are getting this checked out.  Let us know.

 Karen

[Sunny22]

Hi Helen,

Just checking into the forum to follow up on a gradual hearing loss I was experiencing almost a year ago, and I came across your post.  As Jan stated, I'm not sure which Dr. Wiet you are referring to, but I am a patient of Dr. Mark Wiet.  I have been seeing him for the past year, and following up with audiologists at the Ear Institute of Chicago in Hinsdale. 

I find Dr. Mark Wiet to have an excellent bedside manner.  I've seen him several times actually as a patient, not just in passing.  He could not have been more thorough, and he helped me immensely when I was very scared to be experiencing a hearing loss.  (Severe hearing loss runs in my family, but my concern was an AN) The practice in general is great.  I met Dr. Richard Wiet in the office, and he was just as pleasant as Mark.  I'm not sure if you've already seen someone for your dizziness, but I would highly recommend this practice. 

The audiologists are all very nice too... great place.