Anyone Else Out There Like Me

[lthompson]

Hi, I have a question for you all, I was diagnosed back in March of 2004 with a small 8 mm AN, I have yet to get it treated, since I don't have any proof at this time that it is growing, so I am holding tight to not doing anything until it starts to give me symptoms or shows it is growing on an MRI.  I still have 100% hearing, I have hearing tests every 3 months, I have MRI's every 6 mos and so far I have very few symptoms and nothing that affects my daily activivites.  Twice in the past 2 years I have had some hearing distrubances and have been put on prednisdone immediately and within a day or so the hearing is back to normal.  My ENT is not totally convinced that it is the actual tumor causing the hearing disturbance or my eustachian tubes not functioning properly, I guess I will never know.  So my question is "is there anyone else out there with a small AN, yet to be treated and with virtually no symptoms"?  If so, I would love to hear from you as to when you were first diagnosed and how long have you had your AN with 100% hearing and no symptoms.  I have a feeling I am in a low majority, and maybe I am jinxing myself now, with asked this question, but  I am really curious to know.  Thanks.  Look forward to hearing from you. 

[russ]

Hi lthompson
  Though I'm not in the same situation as you I would hazard a "yes", there are others w/o significant symptoms and even much larger ANs.
  Much depends upon tumor location. If your AN is in the IAC, Inner Auditory Canal, waiting 'may' not be as good an idea as Tx. Especially if you have an increase in symptoms. That would indicate the smashing and stretching of nerves against the bony IAC.
  Re Tx; Oftentimes it is the Tx itself which causes proplems, but not always, so, "watch and wait" is prudent for 'some'.
  If this were happening to me, I would want another opinion as to the hearing anomalies whether it's actually ET dysfunction, or, the tumor. Considering the response is so quick after beginning steroid, I'm guessing it's not the tumor also, but it seems reasonable to gain another opinion and by an Otologist.       Possibly the hearing disturbance would have cleared w/o the steroid?
  Does your ear feel full ( aural fullness ) with the hearing disturbance and what do you mean by disturbance? A loss of hearing or strange sounding hearing? Can you pop your ears during the episodes by squeezing the nostrils together, closing the mouth and attempting to blow, "gently"?! This is known as the 'val salva manueuver' and if there is a temorary relief, it may very well be the ET, allergy, or sinusitis.
  Best wishes always!! http://www.tchain.com/otoneurology/disorders/symptoms/etdysfunction.htm It would seem audiogram should be accompanied by Tympanograms, especially when you notice the symptoms.

  Russ

[lthompson]

Hi Russ, my AN is still in the IAC.  My hearing distrubances would start out with a high pitched crackling in that ear along with a fullness sensation.  Gradually during the day the crackling would get worse and sounds would become more and more distorted.  I have never had a hearing loss, just the sounds in that ear would become distorted.  I did ask the doctor I presently go to see (which is a nuero-otolaryngologist out of NYU Medical Center) and he agreed with my ENT, not sure if was  the tumor or my eustachian tubes.  I tend to believe it would have cleared up without the steroids, since the second time it happened it started to get better before I started the steroids, but I am not a 100% sure. 

[targa72e]

Hi Lthompson,

I have just hit one year of watch and wait on June 1st. In that year my hearing has gotten much better(rare). At diagnosis of AN it was 80db loss and 64%SRT, at my last test it was 50db loss and 88%srt so much better (and I can tell it is much better than a year ago). I have most of my loss at 1500HZ with a sharp drop then returning to normal by 4000HZ. My one-year MRI report showed no significant growth (still around 5mmx5mm). The bad news that since my original symptoms of only sudden hearing loss I have added tinnitus, dull ache on AN side and slight balance problems to the list of symptoms. At my last Dr. visit they could tell my VOR was off (I passed this test at initial diagnosis) indicating some vestibular loss on the right side. Overall I consider the symptoms I have to be very minor and they do not impact my daily life. I want to be at the point were the relative risk of doing something is equal to the risk of not doing something. I know that any treatment can cause problems. So for now I will watch and wait until I am sure the tumor is growing, or I start to show my hearing degrading.

john

[lthompson]

Hi, thanks for your info.  I am kind of on the same level of thinking as you are.  I still have perfect hearing and little issues right now, and I know that would change with treatment at this point.  I have totally ruled out surgery, so radiation would be route I would go with this, but I know that radiation has side effects and at this point I just don't want to deal with the side effects unless I have to.