Author Topic: Does everyone have hearing loss before diagnosis/surgery?  (Read 6172 times)

b28

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Does everyone have hearing loss before diagnosis/surgery?
« on: November 01, 2011, 04:12:49 pm »
Does everyone have/experience hearing loss that has an AN? (Before diagnosis)

CHD63

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #1 on: November 01, 2011, 04:27:13 pm »
Hi b28 and welcome to this forum .....

To answer your question, no ..... some AN patients have only disequilibrium/dizziness symptoms prior to diagnosis.

Tell us about yourself.

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

mk

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #2 on: November 01, 2011, 04:49:47 pm »
I would like to welcome you too.

I didn't have any hearing loss, and had never experienced any balance problems or dizziness, even though my AN was almost 3 cm. My presenting symptom, and the reason I went to my doctor was that I had sudden onset of numbness on one side of my face.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

b28

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #3 on: November 01, 2011, 09:43:15 pm »
I'm a 29 yr old woman. I've been having a mild balance issure for several months at least. When I would lean over to the side to get something I would sometimes start to lose my balance. Never thought much of it. About three months ago while I was washing my hair in the shower I noticed that I felt dizzy and off balance.  I stopped and closed my eyes to see what would happen and immediately started to fall backwards.  I still felt dizzy and off balance for a while afterwards.
   Ever since then I've had vertigo w/ nausea, feeling nauseous and like I'm on an amusement ride while riding in cars, dizziness, unsteadiness, trouble concentrating, hard time finding the words I want to say, hard time thinking, headaches all day every day, a headache with strong nausea and shortness of breath, ringing in my ears(i'm pretty sure I already had this, just never thought anything of it and had gotten really used to it), dizziness and unsteadiness and nausea after riding in car, feeling buzzed from alcohol while driving,  and very unsteady and dizzy walking in dark places.  These things didn't all happen at once, I just don't have time to type it up the way I would like to so if you need any clarification or have a question about any of these things please ask!
   About 2 weeks ago I was standing by the street in my front yard and a delivery truck went by. It wasn't going fast. As it went by I took four steps back without trying. It just happened. I don't know if it means anything but it was very weird.
  A few weeks ago I got got dizzy and nauseous after riding dirtbikes for 10 mins. Never had that problem before. I've been riding dirtbikes since I was little.
  A couple weeks ago I went to my family doctor hoping I had an ear infection but he said my ears look fine. He said it could be from a medication I take for Bipolar Disorder. It's Lamictal. He recommended taking half my dose in the morning and half later instead of all at once in the morning. I don't really think it's from that. I've been on it since around spring 2010 and have never had any side effects. My dose was increased by 100 mg in June I think it was but I didn't start having these symptoms until a few months later. I just feel like something is wrong.
  Anyway, doc said there could be a growth on the nerve that connects the ear canal to the brain but he didn't say a name. I just assumed he meant a cyst. Later on while searching my symptoms on internet I came across AN and knew that's what he was talking about. I also know because he checked to see if I had feeling on my cheeks. He said my symptoms are worrisome b/c they are lingering and wants me to see a neurologist. I haven't made the appt yet b/c i'm waiting for insurance to kick in. I found out today that it won't be for 2-4 weeks.
  Three nights ago, I got a headache at about 10:15pm. I started to feel a little nauseous and around10:30 I got very nauseous and short of breath. It was an awful feeling and I was scared. I felt like I might have to call an ambulance if it continued but luckily it slowly got better. I got a headache at the same time the next two nights but didn't get sick.
   After I've had a spell of vertigo or dizziness I feel so tired and drained.

I'm sorry this is all so random. It's just hard to remember everything so I have to type it while it's in my head or I'll forget it. Speaking of forgetfullness, I also feel like i've been very forgetful and sometimes have problems remembering things that just happened. Again, if you have any questions just ask!  Thanks!

ppearl214

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #4 on: November 02, 2011, 03:37:03 am »
Hi b28 and welcome.

Short answer to your question: No.  I had slight hearing loss at time of treatment... and have maintained same serviceable hearing (I still have 96% of my hearing..... pls note "individual results may vary for all") after treatment.

It sounds like you have not been officially diagnosed with an AN.  Pls know that an MRI (typically done with contrast) is the true manner to confirm if you have a mass (ie: AN).   Many medical issues can potentially bring on what you are noting. Suggestion is to follow up with your dr and see if they want to order a scan (ie: MRI with contrast) to rule out a mass (ie: AN).

Hang in there!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

CHD63

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #5 on: November 02, 2011, 07:31:56 am »
Hi b28 and thanks for telling us about your situation .....

We all hope you do not have an acoustic neuroma, but if you do we are here and available to walk you through any difficult parts.

As Phyl said, the only way to definitively diagnosis an AN is through an MRI with contrast.  As has been noted, many other things can cause dizziness and headaches besides a tumor on the vestibular nerve so try to stay calm until you have the MRI with contrast.

Many thoughts and prayers.

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

b28

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #6 on: November 02, 2011, 10:07:21 am »
Thank you.  No I haven't been diagnosed. I've been researching AN to see what all of the symptoms are and almost everything I ready says hearing loss is one the most common symptoms. I have almost all of the other symptoms except for that and facial numbness/tingling so I was thinking well since I don't have this common symptom maybe there's no chance of me having an AN.  I want so bad to go to the neuro and have the MRI done ASAP to find out what is going on but I keep waiting on insurance b/c I don't want to pay for the appt and MRI out of pocket.  I'm considering making the appt and just paying for it myself so I can at least see what the neuro thinks and then if she wants to do the MRI will try to wait for insurance. Does anyone know approximately an MRI would cost in Nebraska?

CHD63

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #7 on: November 02, 2011, 12:56:40 pm »
I do not have any idea what an MRI costs out of pocket, but it would be considerable so you probably do not want to consider that.

My primary care physician always orders my MRIs.  Perhaps your family doc can get insurance approval and order it for you.  It does not have to be a neurologist or ENT to order it.  The ordering physician just has to be able to document your symptoms and code the request properly.  It certainly sounds like you have plenty of documentation to back up the necessity of having an MRI (make sure it is with contrast).

You need to do this for your peace of mind, if nothing else.  Best wishes.

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

leapyrtwins

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #8 on: November 02, 2011, 12:59:30 pm »
While an MRI with gadolinium contrast is the only way to definitely diagnosis an AN, I don't really think you want to pay for one out of pocket.  MRIs are very expensive and you may be jumping the gun.

It's easy to self-diagnosis when you read things on the internet; no offense.  If it were me, I'd wait for a doctor to decide to send me for an MRI - although there's nothing wrong in expressing your concerns to your doctor and asking that he/she order one.

Good luck and keep us posted,

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

New girl

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #9 on: November 02, 2011, 01:33:18 pm »
Sorry to hear you are going through this.  In MA an MRI w/contrast costs a little over $2000.00. 
9mmx14mmx9mm
Diagnosed 6/1/2011
Retrosigmoid Surgery 9/27/2011
Daniel Lee (MEEI) & Fred Barker (MGH) - Exceptional Surgeons

Cheryl R

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #10 on: November 03, 2011, 12:23:16 pm »
All I can say is for Iowa and they can be between $3000 and $6000.   Part depends on how strong and good of the MRI they have.     The price has been going up since I started having them.     You might ask at the places where have them how much are charged if no ins.     
        Good luck with getting this taken care of to know if you really do have one.
                                                       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

b28

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #11 on: November 04, 2011, 09:16:46 am »
Thank you very much everyone for your support  :)

leapyrtwins

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Re: Does everyone have hearing loss before diagnosis/surgery?
« Reply #12 on: November 13, 2011, 10:15:12 pm »
MRIs in Illinois - at least where I have mine - are generally in the neighborhood of $4,000.

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