sudden hearing loss with no answers

[bluebird]

Hello,
I am new to this forum.  You all seem amazingly strong and supportive of one another.  I am so impressed with what I have read. I am hoping that I can get some emotional support and perhaps educate myself for what might be ahead.  I was diagnosed with idiopathic sudden sensorineural hearing loss on January 10, 2011.  MY ENT followed all the proper protocol - prescribing prednisone followed by MRI with contrast.  The reading was negative, but a mysterious lesion did appear in white matter in left hemisphere, indicative of Lyme disease, MS or lupus, possible AVM or tumor.  This was followed by MRA to rule out stroke or AVM, which was negative.  Lyme disease and lupus were also ruled out.  I will be having another MRI next month to see if lesion is smaller (which would be a good thing) or whether there is any change...  Scary.  I am having a difficult time dealing with all of the physiological changes as well as the emotional changes that come with this.  I had no idea what deaf people go through before this experience.  My tinnitus is roaring, like a constant factory sound in my bad ear.  I am learning ways to cope, but I find it hard not to worry about what is causing all of this.  I have more frequent head aches and have experienced some facial numbness and occasionally the feeling like a bug is crawling on my face.  The worst sensation is a tremor-like feeling in my head and arms.  I don't know if this is anxiety or an actual tremor.  I also experience a strange, squishy, grinding sound and feeling when I turn my head.  I had about 2 months of mild vertigo this past summer before the hearing loss that went away on its own.  Now I am slightly off balance and light headed.  I only had one episode of severe vertigo that has not returned.  My bad ear is constantly feeling full - and when it tries to pick up sound in a noisier setting, I hear all kinds of strange sounds!  I have hyperacusis now and am bothered by sounds that never used to phase me.  I would love to hear from any of you - especially wondering about the head tremors I am experiencing.  I feel like I have turned into a regular hypochondirac!  I know that you can not diagnose, but looking for support and education. 

[leapyrtwins]

Bluebird -

hearing loss with no answers isn't rare as you would think.  It happens all the time.

Lots of your symptoms sound like they could be attributed to an AN.  The only way to diagnosis one - or rule it out - is an MRI w/contrast and you've already done that.  The "lesion" concerns me, so I'm glad you are going to have a second MRI.  My best advice is to try and find out what the lesion is - even if you have to get 2nd and 3rd opinions.

A BAHA (bone-anchored hearing aid) might be an option for you to help with your hearing loss - lots of people with BAHAs have unexplained loss - but you might want to hold off on that until you have a definitive diagnosis.

Please keep us posted on your condition.

Best,

Jan

[Cheryl R]

Bluebird, it sounds like you do have a good ENT as some do not really know ANs.    I would also try to see a neurotologist who does lots of ANs as they might have a clue also about the MRI.     One has to make sure that  the  MRI is getting a good look at the internal auditory canal where many ANs are at.               What state are you in?      The worry of this can make the symptoms feel worse as many of us know.         Not an easy time and hope you can get the answer soon.      We can try to answer your questions and give you a place to be able to say all you want to help relieve the worry.                    Cheryl R

[CHD63]

bluebird .....

First of all, you are not a hypochondriac ..... you are just in tune with your own body and you know when things are not right.  Jan and Cheryl have already given you very good thoughts so no need to repeat.  Just want to add that I am glad you have an ENT who seems to be on top of things and has ordered all of the right tests.  Try to think about pleasant and/or fun things until you have some definitive answers.  Stress and tension, as you know, make everything worse.  (Preaching to the choir, here!)

Be sure to let us know what you find out.

Many thoughts and prayers.

Clarice

[ppearl214]

Hi bluebird and welcome.

This past week on our local (Boston, MA) newscast, there was a "health update" story about a local surgeon who ran into sudden hearing loss.  There is a condition called Sudden Sensorineural Hearing Loss (or sudden hearing loss). There is investigation going on right now via the NIH for use of steroids to help with this issue.

You can read the news story here:
http://www.thebostonchannel.com/health/27268088/detail.html

An acoustic neuroma (AN) is a mass (tumor), detected via MRI or CT, best done with constrast, and is best to help rule if an actual mass exists.

If no mass exists (confirmed by MRI), you may want to discuss SSHL with your ENT to see if it is what may (or may not) be occuring.

Hang in there... and hoping you find answers soon.

Phyl

[bluebird]

Thank you so much for all of your responses - and your words of encouragement.  Yes - I saw the program on Channel 5 Boston. I was so glad that they publicized that doctor's hearing loss.  I shared the site with my family and friends so they would better understand what I had experienced.  Dr. Rauch is actually the neurotologist that I saw after my ENT diagnosed me with SSHL.  Problem is, at that time, all I had was roaring tinnitus and hearing loss.  He never looked at my actual MRI, but read the report from the radiologist.  Now I have a lot more symptoms that resemble AN.  'wonky head', shakiness, numb face, head aches, dizziness... I wonder if these are all just symptoms of hearing loss - or anxiety?  If I knew that, I could probably learn to live with - (not to minimize the huge loss you experience when you lose your hearing!).  I now have so much more empathy for anyone who has experienced hearing loss... I can't help thinking the MD's missed something. In my search for a tinnitus support group, I located a retired leader who no longer leads the groups, but told me that she suffered from tinnitus, dizziness and hearing loss for many years before a doctor finally found that she had 2 AN's (NF2).  She said that she had an MRI done 11 years ago and at that time was told her MRI was negative.  She had a different doctor read the same MRI 4 or 5 years later and he spotted 2 very small tumors on each side of her brain.  This really frightened me. I will mention this to my neurologist who is ordering another MRI in April.  I will keep you posted.  I pray that these symptoms are just my brain learning to hear with 'mostly' one ear mixed in with a little anxiety - and nothing more.  But you all seem so strong - and give me lots of encouragement that I could handle it if it was an AN.  Thank you again. 

[Cheryl R]

Bluebird,  I am NF2 and the tumor on the other side did not show up till 2 yrs after my first AN.      At frist I wanted to blame my dr for missing it but in time did realize it was not there when the first showed up.          My first surgery will be 10 yrs on Nov 1 this year.        I have had 3 tumors total and was back to work as a nurse 2 months later except for this last one as I retired right before the surgery in 2008.            I go in a couple weeks for the next MRI and dr appt so am of course starting the nerve wracking thoughts I will have till it is over!      I am sure possible symptoms and anxiety both are what you are going thru now.    We know it too well around here!                          Cheryl R

[ppearl214]

bluebird:

You are here, local to New England/Boston area?  Suggestion is to check out the "Local AN Support group meetings" forum. We are having a brunch in Worcester on April 17.  Many here will be in attendance and great to meet everyone face to face (we had our local ANA support group meeting last Sunday).

I know of a local, former support group leader here in Boston who was treated by the same team as me but not aware of her being NF2, unless you are referering someone different.  I know of another who was former, local support group here in Boston and had surgery at MGH but not aware of her being NF2 either........ .

Suggestion is to have the MRI's try to bring peace of mind for an answer.... yes, AN, no AN.  My hope its the latter.......

Phyl

Thank you so much for all of your responses - and your words of encouragement.  Yes - I saw the program on Channel 5 Boston. I was so glad that they publicized that doctor's hearing loss.  I shared the site with my family and friends so they would better understand what I had experienced.  Dr. Rauch is actually the neurotologist that I saw after my ENT diagnosed me with SSHL.  Problem is, at that time, all I had was roaring tinnitus and hearing loss.  He never looked at my actual MRI, but read the report from the radiologist.  Now I have a lot more symptoms that resemble AN.  'wonky head', shakiness, numb face, head aches, dizziness... I wonder if these are all just symptoms of hearing loss - or anxiety?  If I knew that, I could probably learn to live with - (not to minimize the huge loss you experience when you lose your hearing!).  I now have so much more empathy for anyone who has experienced hearing loss... I can't help thinking the MD's missed something. In my search for a tinnitus support group, I located a retired leader who no longer leads the groups, but told me that she suffered from tinnitus, dizziness and hearing loss for many years before a doctor finally found that she had 2 AN's (NF2).  She said that she had an MRI done 11 years ago and at that time was told her MRI was negative.  She had a different doctor read the same MRI 4 or 5 years later and he spotted 2 very small tumors on each side of her brain.  This really frightened me. I will mention this to my neurologist who is ordering another MRI in April.  I will keep you posted.  I pray that these symptoms are just my brain learning to hear with 'mostly' one ear mixed in with a little anxiety - and nothing more.  But you all seem so strong - and give me lots of encouragement that I could handle it if it was an AN.  Thank you again. 

[bluebird]

Cheryl,
I am sorry for all you have had to go through.  I can't imagine... Are you saying that the NF2 tumors may not show up on MRI even if you are experiencing symptoms?  Are there any other types of scans or tests that might pick up? 

[bluebird]

Phyl,
I live in southeastern MA.  Many of my MD's are in RI, but I went to Mass Eye and Ear to play it safe after the hearing loss.  Are there any MD's you would recommend? I did not think I would be able to attend a support group if I was not diagnosed with AN... but it sounds like you would welcome those with just symptoms?  I checked and was not able to find the support group listed for MA.  Perhaps I am not looking correctly.  The person I was referring to in previous post that had NF2 used to lead a tinnitus group in RI.  It is beginning to sound like those with NF2 have a harder time getting their initial diagnosis.  What a horrible illness this must be.  Thanks again.
Debbie

[ppearl214]

Hi Debbie

Let's see if I can be of help.

We have many AN'ers that live in SE Mass, some that attended the meeting last week.  Please keep an eye on the "ANA  Local Support Group Meeting" forum as updated meetings are noted there.  You can also find out about the support groups here:

http://www.anausa.org/index.php?option=com_content&view=article&id=127&Itemid=164

Basically, for MA, there are SO many AN treating teams in downtown Boston, most with affiliations with Harvard Medical.  The team at MGH/MEEI is wonderful in their surgical approaches for AN's (Barker/McKenna).  Brigham Woman's also has a fantastic group... .Dr. Elizabeth Claus, at B/W neuro is also a member of the ANA Medical Advisory Board (MAB).... Beth Israel, where I was treated, has a terrific Cyberknife team (of which I can attest... this week is my 5 yr post-treat anniversary).  Tufts doing great work with GammaKnife, as well as Dr. Georj Noren in Providence.

In your situation, the main key is this.... do you have an AN or not? Thus, you know how to pursue.  Sudden Hearing loss can be attributed to many things and research is forging forward as you saw on the Channel 5 piece this week.  An MRI with constrast will be key in your case.  Mass Eye  and Ear would be a terrific location if, come to find out you don't have an AN.  I've attended some conferences that they have had (with a friend of mine working on a cochlea hearing device) and they are definately on the forefront for all forms of hearing loss.

So, those are my recommendations.

Please know that NF2 is a genetic issue pertaining to Chromosome 22 and usually involved multiple tumors.  In your case, let's find out if any tumor exists. 

Your doing your homework, which is great.... to help be the best, well-informed patient you can be. From an AN standpoint, let's see even if you have one.  Suggestion is get the MRI done so you know how to proceed and in which direction. The MRI results will be the key.

Hang in there.
Phyl

[Cheryl R]

Debbie,    I hope I did not scare you as that was not the intent.      The second one was not even growing yet so not showing up.
The MRI with contrast is the best thing to find ANs.        There is more than one version of NF2 and one is more severe with it showing up in younger people and more chance of several ways how it hits the body.       NF2 also can be hereditary but now they are seeing more of it being a genetic mutation. That is problably what mine is and I got as an older adult.     I was 51 before the 2nd one appeared.     I do have the possibility of spinal tumors and some other type of benign brain tumors but there is a chance I will never get those and be just schwannomas and hopefully no more than what I have had,   I do have to keep watch though.      NF2 is only 5% of all ANs so it is rare.         I was not thinking of you having NF2 but just explainging my situitation.        I had no symptoms of the tumor on the other side and was only found with my post op MRI after surgery.      Actually I had been told I had a small pituitary tumor and saw once and never showed up again on the MRI's over the years.      In time i did have other side symptoms.               I am hoping that I will never have any more tumors but my case is different than most with the just one sided AN and that is all most will ever have.      One has treatment or wait and watch and most with treatment recover and go back to a normal life with perhaps some adjustments.   Most of these people do not stay on here so a newbie does not realize that many do not have long term bad problems.         To look at me one would not think I have had what I have had and my issues are only seen if one is with me 24 hrs a day, day in and day out.                         So in your case, finding out what it is that is showing up is the most important and then go on from there.                        Cheryl R

[bluebird]

Thanks again for all of your support and good advice.  It seems the most important thing for me is to get that second MRI with contrast and make sure the MD knows all of my symptoms  It is great to know that Boston offers so much for the AN community.  I appreciate your help and will let you know how things turn out.
Debbie

[ppearl214]

Debbie

Pls keep us updated as to what is going on.....we're always here (well, at least I am! ) and keeping fingers crossed it is NOT an AN but hoping you obtain answers VERY soon. 

Let us know how things go!

Phyl

[suboo73]

Hi Debbie,

I have been following this thread and hoping you are finding some answers.
One of my daughters as had some unusual symptoms in her neck, face and leg.
So far, all of her tests have been negative. 
She did have an MRI of her head with no lesions, but they did not do contrast.
So i am curious if you had contrast with the first MRI.
My daughter is still searching for answers - my concern is she has MS, as my mother-in-law had it....but i think i have read that there is no direct (or proven) direct genetic link.   If she would have MS, then treatments would be better now than later.

My thoughts and prayers are with you.  Please keep us posted with updates.

Sincerely,
Sue