Author Topic: Trying to get Used to this AN situation  (Read 10303 times)

chance1212

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Trying to get Used to this AN situation
« on: January 07, 2012, 03:25:15 pm »
Jan 2010 I found myself having the school nurse where I work periodically check my ear for infection. It felt stuffed up. Nothing. Then spring came and I excused the feeling thinking it was allergies. Coworkers would ask me things and apparently thought I was ignoring them during this time. Summer came and this ear still didn't feel right, so I went to an ENT. A hearing test showed a significant decline when compared to a test performed years prior. Enventually, the MRI showed an AN that is very small, like 7 mm. Since that diagnosis in July, and deciding watch & wait is best, I have (by Nov 2011) lost the rest of the hearing in that ear, began having mild vertigo, ringing has increased in volume, and I have that jittery feeling often in my head. I have tried a hearing aid in my good ear, but it did not improve anything. I had a steroid shot to minimize ringing--no change. Recently Valium for ringing--no change. Vitamins cause the ringing to get worse. I go to chiropractor (which I did before this as well) and wonder if it is actually making things worse. I have gotten a 2nd opinion, and one of the places is Vanderbilt.  When I tell the doctors what I am experiencing, I have been told that several symptoms can't be the tumor--like the stuffy ear feeling. I did not have these symptoms prior to 2011, and they really impact life. I seem to deviate from the "norm" especially with losing my hearing so quickly. When I read of treatment options, it seems that surgery will not alleviate my symptoms? I know the hearing is gone but what symptoms will possibly go away with surgery? I would like to know the experiences of others with surgery & GammaKnife and if it's worth the chance even though mine is so small. With these AN situations, it seems like the doctors are very reserved in giving their opinions on what to do. I know there's little data and no guarantees. My next MRI is in February. I'd also like tips on how to make sure I don't leave the appointment with my questions not being answered.
« Last Edit: January 07, 2012, 03:47:03 pm by chance1212 »
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

Jim Scott

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Re: Trying to get Used to this AN situation
« Reply #1 on: January 07, 2012, 04:49:28 pm »
Bob ~

I'm not a doctor and hesitate to disagree with them but your symptoms definitely appear to be related to your acoustic neuroma.  Your rapid loss of hearing is not unknown as an AN symptom but, as you noted, is relatively rare.  Mine probably took at least 3 years to disappear and my AN was very large upon diagnosis (4.5 cm).  Surgery should alleviate some of your symptoms such as the vertigo but it will not effect tinnitus (the 'ringing' you mentioned).  Unfortunately, the very small tumors, like yours, tend to cause the most trouble.  What you need to consider is the fact that if the AN is giving you all these problems now, what will happen if and when it grows?  Regrettably, the odds are that it will.

Here is link to pertinent questions you should be asking your doctor at your next consult:  http://www.anausa.org/smf/index.php?topic=12217.msg140897#msg140897 
I think you'll find it helpful - and I'm sure other posters will add their own suggestions and advice.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: Trying to get Used to this AN situation
« Reply #2 on: January 07, 2012, 08:04:35 pm »
Hi chance1212 and welcome to this forum!

Not sure why a doctor would tell you that a stuffy feeling ear is not a symptom of having an AN ..... other than the balance issues, a suddenly stuffy ear is what sent me to an ENT, resulting in a definitive diagnosis of an AN.

In my case I did not have tinnitus (ringing in the ear) until after my first surgery ..... and alas, it did not change after the second surgery ..... if anything, it is worse.

For several reasons I was not a candidate for radiation treatment of my 2+ cm AN.  Therefore, it was surgically removed via retrosigmoid approach, saving 20% of useful hearing.  Unfortunately I experienced that rare circumstance where my tumor grew back and it was removed a second time via translab approach, which left me totally deaf in that ear.  However, I had a bone-anchored hearing abutment implanted at the same time as the second surgery and I am extremely pleased with my Oticon Medical Ponto Pro hearing device.

There are excellent medical centers in this country who will evaluate your MRI and audiogram, free of charge.  You may want to consider getting several opinions, even if you do not go to the center giving an opinion.  House Research Institute/House Ear Clinic in LA is highly respected, as is Stanford University or University of Pittsburgh Medical Center .... and others.

Best wishes as you navigate the research and treatment decision phase of this process.

Let us know how you are doing and ask any more questions you have.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

chance1212

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Re: Trying to get Used to this AN situation
« Reply #3 on: January 07, 2012, 08:45:02 pm »
Thanks so much for the quick replies. Another symptom that has lessened a bit in the past month or two is that of recruitment where sound hurts the deaf ear. So much to think about when your thoughts are bombarded with noise! If the surgery would get rid of ringing, I would have it tomorrow! But if the vertigo and stuffy ear feeling would possibly go away that would tip the scale in favor as well. I guess Vanderbilt didn't suggest surgery and felt watch and wait due to size. I will look and print that list of questions and take it with me. This AN has affected a lot of activities, but thankfully not too bad so far in the classroom. I would be so miserable if I had to quit my job as a teacher.
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

leapyrtwins

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Re: Trying to get Used to this AN situation
« Reply #4 on: January 07, 2012, 09:55:23 pm »
The two symptoms that led me to my diagnostic MRI were diminished hearing and a feeling of fullness in my AN ear.

So, although I'm not a medical professional, I have to dispute the "stuffy ear" not being a symptom of an AN.

My surgery left me SSD (single-side deaf), but it also alleviated the "stuffy ear" feeling.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Cheryl R

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Re: Trying to get Used to this AN situation
« Reply #5 on: January 08, 2012, 09:08:46 am »
I also had the full ear feeling on my right side but not later on my left when had the AN there.   I swore it was allergies but was not and the rest is history.,
                          Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Richard_T

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Re: Trying to get Used to this AN situation
« Reply #6 on: January 11, 2012, 09:40:32 pm »
Bob,

I had mild, but gradual hearing loss for a couple of years and dismissed it at first as wrong and second as aging (most of us need reading glasses to read as we age, why not the same with a little hearing loss).  While exercising one day a few months ago, I felt pain and then some profound hearing loss that was not dismissible and the fullness in my ear.  I thought it was due to a head cold.  After 2 weeks, I went to the ER, was referred to an ENT, had an audiogram, MRI and bingo!  So, I concur that the stuffy ear diagnosis (though not a medical professional) is most likely due to the AN.

I, however, am choosing CK both because I am a big baby and because it makes sense to me to do the least invasive move first.  Some people cannot live with the invader left in their head, even if of no further trouble.  I certainly understand and respect that position.  I just do not subscribe to it myself.  I can live with it if no longer a threat.  On the other hand, I will have 6 month MRIs for a long time.  You say potato, I saw potato (pronounced po-taa-toe)...
1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

Susan A

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Re: Trying to get Used to this AN situation
« Reply #7 on: January 12, 2012, 07:33:28 am »
The two symptoms that led me to my diagnostic MRI were diminished hearing and a feeling of fullness in my AN ear.

So, although I'm not a medical professional, I have to dispute the "stuffy ear" not being a symptom of an AN.


I second what Jan and Clarice said - it was the feeling of fullness in my ear that led to me to the ENT last July. Like you Chance1212, I'm a teacher and I'd been accusing the kids of mumbling a lot last year! The ENT told me the hearing frequencies I've lost are those for women's and children's voices - and I work in an elementary school :-( My tumor's about the same size as yours. I find the feeling of fullness comes and goes, as does the tinnitus. My hearing aid helps to some degree - but the only way I know that is that if I'm not wearing the hearing aid as I leave for work the car radio sounds wrong. It doesn't help as much as I had hoped it would, but enough to make it worth wearing at work. I still try to sit kids on my good side though when they're working with me one-on-one.
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

chance1212

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Re: Trying to get Used to this AN situation
« Reply #8 on: January 12, 2012, 06:57:25 pm »
Thanks for the replies! My ringing and feeling of fullness in 24/7. The vertigo and balance issues are there, but they're not that bad. I also am bothered be loud noises even though I have no hearing left in that ear.The caffeine buzz feeling is also annoying. At times it is tiring because it takes so much energy to pay attention & focus thoughts, etc. Richard--I am curious about the CK. Will that take away any of the symptoms?
Susan--The classroom has not been that bad so far. 3rd graders are pretty tolerant of the situation. I too make sure to have the working ear toward them when doing small group work. Is your hearing aid in the ear that has the tumor? I tried one in my good ear. They hoped it would compensate for the loss on the other side by improving the good ear. It had no effect; therefore, I returned it. I have been fortunate to not have medical issues up till now. Usually when you're a good cooperator and follow doctors orders...there's positive results. That has not been my experience so far.
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt

mindyandy

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Re: Trying to get Used to this AN situation
« Reply #9 on: January 12, 2012, 07:17:07 pm »
Chance
I can say that the ringing or tinnitus does no get better with CK. Can actually make it worst. You can also lose what hearing you do have. Not saying you will. I do hope things settle down for you soon.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

Richard_T

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Re: Trying to get Used to this AN situation
« Reply #10 on: January 13, 2012, 12:29:20 pm »
Chance,

MindyAndy (and others) have been thru CK.  I am also just a noob.  I am having mine next Wednesday through Friday at Stanford.  So, I cannot speak from personal experience yet.  I do concur with MindyAndy on her experience as far as my research is concerned.  It seems that no one is losing symptoms immediately from CK or surgery.  In fact, it appears for all types of treatment, the best scenario is no aggravation.  The worst is some increase in existing and the remote possibility of new symptoms.  However, if you can't W&W (which could aggravate and add symptoms by the AN continuing to press on nerves and/or growing and doing so), then what choice do any of us really have? 

Nevertheless, there are some reports on our forum of people who have had radiosurgery having their hearing and tinnitus improve.  I would hope for the best, but plan for the worst.  That's what I've been doing.  I hope that helps.
1.9 cm x 1.6 cm x 1.8 cm AN diag. 12/09/11
CK at Stanford 1/20/12

chloes mema

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Re: Trying to get Used to this AN situation
« Reply #11 on: January 13, 2012, 01:39:48 pm »
I too have been recently diagnosed with AN.  I kept complaining to ENT that my left ear felt like there was a plug in it and if he could only pull that plug out I would be able to hear and the tinnitus would subside.  Not so.  MRI showed a 10.2mm AN.
I do wear a hearing aid in left ear, which if for no other reason than psychologically, it seems to help some.  I noticed that with a cleaner diet my tinnitus has improved.  Caffeine and salt will make tinnitus worse.  Was fitted today with a hearing aid for my "good" ear but not sure I like it yet.  The audiologist told me to make sure I was facing people now when they talk to me. 
Was at the audiologist this morning complaining that loud noise, especially music, hurts my left ear.  She said it sounded like recruitment.  Never heard of that before.  Aren't we just special all these new physical / audio things.
BTW while at audiologist I picked up a brochure for WIDEX hearing aids which can be programmed to use Zen tones to calm tinnitus.  "...Zen plays random, chime-like tones that can be used for relaxation and for making tinnitus less noticeable."  Have no idea if it works but I'd be willing to give it a try.  I know when I listen to meditation on my iPOD it helps.  Just more to know and think about.
Bottom line, I say what you're experiencing is very much in line with having an AN.
The more I view the postings the more I learn and grateful I am for this forum.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

CHD63

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Re: Trying to get Used to this AN situation
« Reply #12 on: January 13, 2012, 02:59:20 pm »
Karen .....

After my first AN surgery, when I still had 20% hearing in my AN ear, I used a Widex hearing aid with good results.  It had the zen setting, but I only tried it a few times because it did not seem to help the tinnitus, nor did I find it relaxing (I kept trying to figure out the "random" chimes.).  It was a good hearing aid for assisting with understanding conversation, however.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

chloes mema

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Re: Trying to get Used to this AN situation
« Reply #13 on: January 14, 2012, 11:17:09 am »
Clarice, that's good to know.  I have Phoenix brand hearing aids now and I guess they work well since I've never had any other brand.  I was thinking I might like to try the Widex next go around.  I wondered if the Zen chimes would make a person more "nervous" and unsettled than not.  Interesting.

Karen
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
May'12 CK completed
Oct'12 hemifacial spasms
Dec'19 It's back

chance1212

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Re: Trying to get Used to this AN situation
« Reply #14 on: January 14, 2012, 07:19:59 pm »
Mindy, So you had CK and now you're going to have surgery? I was reading the stats on your post. The CK does what? I used to think it destroyed it, but now realize that is not correct.
6mm 08/11;   lost hearing by 10/11 & tinnitus;  growth shown 02/12;  more growth-now 1.2 cm 08/12;  Translab @ Vanderbilt Haynes/Thompson  11/13/12
J. Hildebrandt