New diagnosis

Hi there,

sorry to hear about your problems... I did get the MRI done because the doctor said it was importaqnt to exclude the possibility of a tumor that would require different treatment. 

As to what suggesstions, I had bad hearing loss in my left ear, yet noise at the level of a train or a helicoptor and a constant tinny after-echo, almost as if there was a speaker on that side that was slightly delayed.  I did the MRI, was told to not use sodium or caffeine, was put on diuretic that was a blood pressure medicine despite my bloodpressure being fine. 

After several month of sticking to all of that I had no improvement.  I was close to going insane and not willing to accept at 41 that this was going to be the way it would be forever, and being told it would only get worse.  A friend suggested accupuncture. Laughed at first, but then gave in out of desperation.  The practitioner asked me to commit to a minimum of 4 sessions in the first week. I would not call it pleasant, but it was tolerable. After the third visit I noticed that the helicopter level noise had gone down to a strong wind level, which was a huge improvement, and the tinny echo disappeared for a couple of days. After that went to bi- weekly, now a few month later I am going every 3 weeks. I do not have to turn my head anymore to understand low frequency voices and would almost bet the hearing in that ear is close to normal again, but have not gotten it retested yet. The constant noise is gone most of the time, every once in a while it is back at a very low level. I do not stick to the no sodium and no caffeine anymore and also stopped taking the medicine. Plan to continue going to accupuncture treatments once a month as maintance until it gets worse, nauseua, etc also can be targeted with that...

Abigail, You are doing what you need to do that is do the research constantly. You are way to young to be going this route , bad enough when you are old. Things I do yoga 3-4 times a week, walking eyes closed stairs, rooms even safe roads, no more junk foods, plenty vegs and fruits , and everyone will tell you lots of water half your weight daily. I am doing acuputure and stared reflexology after people mentioned it. Also their are specialists at Shea Clinic for procedures. I did 3 profusions in December good results but lasted just 2 -3 months. Hearing aids if u can use them stimulates those nerves, helps ringing. Finally, most important stay informed constantly about ways to combat this disease. As former teacher research is the key. May good things start happening for you asap.

Did you receive treatment for the right ear before you lost hearing in that ear?  Is your diagnosis Meniere's Disease?  If it is, you have to make sure that it does not happen again in the left ear.  Not only will you loose hearing in both ears, but also there will be complete balance discontrol and you will be severely affected?  If treatment for the right ear (assuming MD) was a low salt diet etc. and it did not work, for the left ear you should go straight to intratympanic steroids.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Dear Abigael,

You poor thing!  You're only 20! I'm so sorry to hear about what you're going through.  I understand how frightened you must be.  I have severe hearing loss in my right ear as well, along with loud fluctuating tinnitus in both ears, and it has had a huge impact on my life. 

I'm so sorry, but somehow I missed any previous discussion about your situation.  Was your hearing loss sudden or gradual?  You don't mention any of the other symptoms of Meniere's Disease, so I'm unclear:  Have you been diagnosed with MD?  I only ask because Meniere's Disease is most often a disease of people in their 40's and older.  Not that it can't happen to a young person...It's just that it's unusual.  Also, different types of hearing loss seem to have different treatments and prognoses.  

Please understand that I'm not telling you what to do, but  if it were me,  I would have the MRI done because you're talking about pain, pressure, ringing and hearing loss in that left ear,  that's not associated with other MD symptoms. I also had MRI's done, to rule out any other cause of hearing loss.  And for me, there was relief and some sense of control in knowing what the problem wasn't!  I wouldn't want you to miss out on finding out that something is there, that could easily be corrected.  

There are any number of things that could be causing your hearing loss.  The worst thing to do at this point, is nothing.  You must do what you can to find out what's going on with that left ear, and preserve what hearing is remaining.  You need a diagnosis to work with. 

I know all of this must seem quite frightening.  But you're too young to run away from it, and allow things to get worse.  You must take very good care of yourself, right now.  It's time to learn as much as you can about your type of hearing loss and ask your doctor lots of questions.  Be gentle with yourself.  And if you do some searching on the web, you'll find that there are a couple of excellent national and international organizations for the hearing impaired, that offer all kinds of iincredible nformation, support, and referrals.

If you're not already, I hope you would consider being seen in a University setting, where they typically see the most unusual cases, and have the most cutting edge treatments at their disposal. 

I wish you the very best of luck....Take good care...

J-

J- 

Oh dear Abigail 31441,

My heart goes out to you. There are ways you can get insurance coverage to get you taken care of. An mri is a must. You must be diagnosed first, then go from there. Mri's will rule out tumors, etc.

I have been diagnosed with MD and it sometimes seems to leave you feelings just helpless and depressed.

I will be going to the University of Maryland Hos.to see a specialist. Its important to find the right professionals to care for you.

Try and see if there is an insurance out there for you. Call your state gov connect health care and talk to them.

You, my dear, can not ignore this. You are much too young.

Good luck and please keep us updated?

Chergold

As an add on to what Cherylgold said, my insurance did not cover the MRI because of the deductable, but one thing you can do is call around. My doctor referred me to a hospital to do the MRI and the day of the appointment they called me and said $450 needed to be paid the day of the appointment, and another $1000 over the next couple of month, so had to cancel that appointment. After calling a few different places around town I found a non-hospital diagnostic center where the total cost was going to be $540 after cash discount!!!! Not sure if that is an option were you live, but would recommened to comparison shop (but also look at reviews or check with your doctor to make sure it is a reputable place).