Expert: Harriet B Jacobster, Au.D. - 12/20/2008

Question
I sent you the following and got a response saying you don't understand my question:  About 7 years ago I was an avid SCUBA diver and had my first (left) ear infection.  (No trauma that I know of, and I haven't been diving in 2 years now). Was given antibiotics and the pain cleared within a week.  This happened more and more often until last year when my left ear seemed to be hurting weekly, and then daily, usually in the afternoon/evening hours and always if I am exposed to smoke, loud noises, or high humidity.  Once it comes on, it is a burning, pulling, constant, debilitating pain, not a quick sharp pain.  My GP sent me to an ENT who did all the tests and said nothing was wrong with my ear and that he saw no signs of a recurrent infection.  GP and I both decided to get a second opinion, and the second ENT found nothing as well. Since they were both sure I had NOT been having ear infections, he suggested bruxism, or TMJ.  My dentist ruled that out.  Neurologist # 1 suggested trigeminal neuralgia. Neurologist #2 suggested Glossopharyngeal Neuralgia or Geniculate Neuralgia.  I don't think my symptoms fit either.  Now they're sending me to a Radioneurosurgeon to consider Gamma Knife treatment for one of these "neuralgias".  Before I go destroying any nerves with a gamma knife, I'd like to be sure what it is that I have.  Tegretol, lyrica, neurontin, etc. have not helped.  40mg/day of percocet did help, but who can function on that?   20mg/day of prednisone seems to keep it under control, with only 1-2 episodes of pain per week, usually after a long day.  Ice packs help during the episodes.  Other history:  I also have a herniated disc at c5-c6, low-lying cerebellar tonsils (not extensive enough to call Chiari), and a set of 2 full cervical ribs.  Any ideas?  I am desperate to get my life back, but I really don't think blindly killing off nerves is the answer.  Thanks in advance for your time.

My question is:  Do you have any idea what is wrong with me and why I keep getting this horrible pain in my ear which is NOT an ear infection.  Do you agree with either of the "neuralgia" diagnoses?  Could it be something else like relapsing polychondritis or stapedial myoclonus?  Or could it be related to the cervical ribs or the disc problem?  ANY ideas would be appreciated.

Answer
Hi Patricia,
When I get questions like yours, I become a bit concerned.  First, I am an audiologist whose expertise is in the evaluation and non-medical treatment of hearing disorders.  As such, your question is just bordering out of my expertise. However, I will still offer some general ideas.

It seems as if you have been to at least five physicians and a dentist and have done a lot of research on the internet. The two ENTs came to the same conclusion and the two neurologists came to the same conclusion. I cannot tell you much more than these diagnoses do fit your symptoms even if you think they do not.  You suggest stapedial myoclonus which of itself is a symptom of a neurological disorder rather than the disorder itself.  As for relapsing polychondritis, this is out of my expertise. You would probably need to consult a rheumatologist or immunologist, but your symptoms do not suggest this disorder. Polychondritis is a disorder of cartilage, and you do not mention whether your outer ear itself, which is made up entirely of cartilage, is affected. Also, it seems to be limited only to the one ear which is not typical. You also do not mention that other cartilaginous parts of your body, e.g., throat, are affected.

Yes, I can very much understand your hesitance in "blindly killing off nerves," but it seems you are not getting any relief through medication and, with certain neuralgias, resection is standard procedure. I also get the feeling that you are not convinced of the diagnoses of these physicians.  Do you trust these physicians?  Have you addressed your concerns with these physicians?  Unfortunately, even neuralgia itself can be a symptom of something else, e.g., herpes or multiple sclerosis, and you may never be sure of the root cause. Also, sometimes once a nerve is damaged, it can never recover even if the root cause is found and treated. It seems that the diagnoses you have received are very plausible given your symptoms.

My suggestion would be to sit down with the physician with whom you feel most comfortable - whether it be your GP or one of the neurologists - and address your concerns and questions with him honestly and openly. If after doing so, you still decide not to go ahead with the nerve resection, you may try consulting a pain management specialist who can help you deal with the pain and get your life back on track.

Hope this helps.
Harriet B. Jacobster, AuD
Board Certified in Audiology