Author Topic: Confused, scared and lost  (Read 1738 times)


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Confused, scared and lost
« on: August 19, 2017, 12:46:51 am »
I've been told I had a suspected AN for the last few years. I suffer from bilateral Pulsatile Tinnitus, hearing nerve damage on my right side with sudden, profound hearing loss. I've recently developed searing headaches, mild facial weakness on my right side and minor loss of tongue sensitivity on the right side. I've recently developed regular Tinnitus in my right ear to accompany the in.ncredibly loud Pulsatile Tinnitus.

When the first symptoms started, the Pulsatile Tinnitus, i under went an MRA/MRI (in 2014) without contrast as I have third stage kidney disease and the contrast was considered at that time to be an unnecessary risk. Those tests came out normal showing no tumors or any structural causes for the Pulsatile Tinnitus. An AN was still strongly suspected but without contrast my doctors felt wait and see was the best course of action. But over the last 6-8 months more and more symptoms aligning with Acoustic Neuroma began piling up. My doctors and I finally decided it was time to test my creatine levels to see if my kidneys could handle the contrast. The results came back acceptable.

I had the MRI with and with out contrast on Wednesday. I was notified this afternoon that I did not have an acoustic neuroma. In fact the MRIs, both of them contrast and without showed no structural issues at all. Nothing.

While this might seem good news I'm still suffering from all the symptoms. These are as prevelent, painful, quality of life diminishing as ever. My ENT's response to my question of where do I go from here was to 'get a hearing aid'. Mind you my hearing loss is permanent from extensive nerve damage. Her response seemed flippant, even if not intended that way, but she made it clear her department was done with me. No other help would be forthcoming to try and find out what's causing all these problems.

I'm totally lost at what to do. I'm in an HMO - Kaiser - and I feel they are utterly washing their hands of the matter. To get a second opinion outside of Kaiser requires a referral I know I will not get. I have put in a request to my Primary Care Physician to have mother Radiologist read the results of both MRIs but my request won't even be seen by her until Monday.

Does anyone know of anything that so closely mimics acoustic neuromas but isn't that?  I was assured for several years this is what I was facing and would one day have to deal with. I'm 62 and not in good health but those issues have nothing whatsoever to do with the acoustic neuroma symptoms which are impacting my life in major, limiting ways.

I feel abandoned. And ungrateful. Instead of being happy I don't have a brain tumor (at least not an acoustic neuroma) I'm terrified because all my symptoms are caused by something. I'm back to square one with no one willing to look for any other cause. I'm on SSDI and Medicare so am limited on where I can go.

Any advice, experiences, options, suggestions will be gratefully accepted. Right now I'm in tears as I had thought the cause was assured and only the size and position of the acoustic neuroma was in question. My wife and I spent many difficult hours formulating a plan and a way forward depending on the MRI results.  Now I'm left in pain, my quality of life is severally diminished and I have absolutely no clue what to do.

I've asked so many wonderful people to pray for me. To send love, light and healing. I have no idea how to say your prayers worked. No acoustic neuroma was found. But how do I explain my devastation at being left with no cause for my suffering. No answers for my pain. No expectation of help from my HMO and no funds to bypass them and seek help elsewhere. I feel like an ungrateful horrible person. I haven't a clue how to say thank you for everyone's amazing efforts and kindness and not share even an iota of the relief or happiness they will most likely feel.
« Last Edit: August 19, 2017, 08:44:24 am by Shai »


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Re: Confused, scared and lost
« Reply #1 on: August 19, 2017, 12:58:16 pm »
First, I'm so sorry for what you are going through. I think your feelings are perfectly normal. With a positive diagnosis, you would at least have a handle on what you are dealing with and an understanding of what the treatment and prognosis are. I know that when I was diagnosed with AN earlier this year, there was a bit of relief: ah, so  that's what those odd symptoms are all about!

Because the MRI did not show AN does not mean that Kaiser can now wash its hands of you! I hope you have the strength and grit to insist that you get both a diagnosis and treatment.

If it is any consolation, my ENT  did not have much compassion either. She left a message on my answering machine that my MRI was "abnormal" and I should make an appointment with a neurosurgeon.


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Re: Confused, scared and lost
« Reply #2 on: August 19, 2017, 06:36:55 pm »
Shai, can you list your symptoms and quantify wherever possible. For instance, hearing loss can be quantified into Pure Tone Average (PTA) and Word Discrimination. Knowing these figures for each ear may result in some feedback from the community. Also, list the order in which the symptoms occurred and how long ago.


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Re: Confused, scared and lost
« Reply #3 on: August 23, 2017, 12:25:11 am »
I'm so sorry to only now get back online after posting. I ended up with a bad reaction to the contrast dye. I do have my results from the audiologist and will look for the numbers you suggest. I'm so grateful to have any help here. I have asked for a second opinion. My doctor is out for the week but I believe she'll approve my request. My wife and I are still trying to regain our footing and me being so sick the past few days hasn't helped. I'm still quite nauseous but will post again hopefully tomorrow with a timeline on my symptoms. Thank you again. This all feels like the Twilight Zone.


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Re: Confused, scared and lost
« Reply #4 on: September 19, 2017, 06:45:46 pm »
You can quickly and easily get a second opinion on your MRI by sending it overnight mail to some major centers that are real AN experts.  Such as the House clinic in Los Angeles.  House also specializes in some other hearing issues.  You send your MRI overnight and they call you with a diagnosis, for free. Some of the other major centers do that also.  I am pretty sure Kondziolka at NYU (radiosurgeon) does that over the phone, for free. This would be a good first step, to get a second opinion.    When you talk to them, you can tell them of your other symptoms, and if it's not an AN, ask for a referral.

I would also get a second ENT who cares.  You will have to advocate for yourself.  But you can do it.  Alot of people on this forum had insurance issues, and negotiated through it.  Don't take no for an answer.  Advocate for yourself.

Keep us posted.  There is alot of experience on this forum, which can help you get through.  There is also a list of folks who are willing to talk things through with you.  Check that out.  PM me if you want to talk.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!


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Re: Confused, scared and lost
« Reply #5 on: October 26, 2017, 05:36:55 pm »
I'm sorry you're going through this. I just remembered reading about Meniere Disease as having very similar symptoms as acoustic neuromas and I thought I'd mention it if you want to look into it.
The definition is:
Meniere disease is a disorder characterized by recurring attacks of disabling vertigo (a false sensation of moving or spinning), fluctuating hearing loss (in the lower frequencies), and noise in the ear (tinnitus).
These symptoms are huge quality of life issues and I hope you can get to the bottom of what's causing yours. Hope you find the answers soon.  :)