Tuesday, May 1, 2012

Ear Progress: My Story of Sjogren's and Ear Pain Continued

I think writing the most recent blog post about the possible ear manifestations of Sjogren’s might have been a good omen.  As I had mentioned, I had been unable to find an ENT physician with interest in really investigating my symptoms and knowledge of autoimmune disease.  The usual story would be that I would go to the ENT, he would look briefly in my ears and tell me everything looked fine. They would say that my ear symptoms where all related to the cranial neuropathies I have due to Sjogren’s and refer me back to my rheumatologist and neurologist.

For the last two years during these appointments, I have tried to explain that it at least felt like there were two different problems going on and two different sets of symptoms; the neurological aspects of autoimmune disease and something else that was causing what felt like an ear infection and ear pressure.  But doctors, as I have so often experienced, do not always spend the time to figure out if what the patient is saying is actually accurate nor to really investigate what might be causing a patient’s symptoms.   To make it more complicated--and more frustrating--my allergist and my internist on several occasions would look in my ears, find them red and inflamed, diagnose me with an ear infection, and put me on a course of antibiotics. This might help for a few weeks, but then the symptoms would return.

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The pattern repeated itself last week but my internist did not want to put me back on antibiotics without getting a second look from an ENT. While I was skeptical that this would be nothing but another fruitless trip to yet another new ENT’s office, I agreed to give it one more try.  I went to the new ENT’s office and was first seen by the resident who looked in my ears with an otoscope and said everything looked fine. Another wasted trip to the doctor I thought, at least I am no longer surprised by them. 

Then I met the ENT doctor. He was pleasant and very interested in my medical history.  When he looked in my ears with the otoscope, he said “I think I know what is going on here.” He then used a nasal endoscopy to look at my sinuses, throat, and ears and see if his hunch was right. At this point, I did not know what his hunch was, but I was glad to hear he had one. The doctor explained that I had eustachian tube dysfunction, which is suspected to be one of the primary causes of ear pain and pressure in Sjogren’s patients, as I wrote about here.  He also diagnosed me with chronic sinusitis.  Because the conditions are chronic and not acute, antibiotics would not provide a long term solution.  And so the doctor came up with the following plan to get started and see if he could treat these two related issues.  

1) He gave me a prescription for two new nose sprays: a steroid and an antihistamine.  I was already using a steroid nose spray, but he felt this one would be more effective.
2)  I would need a CT scan of my sinuses to get a better look at them.  (I was not crazy about needing another scan, but it turns out they had never looked at my sinuses and given my ear problems and pain level I’ll do it.)
3) Additional blood tests for allergies to see if the chronic sinusitis might be partially allergy mediated.

One of the most notable differences between this appointment and others I have had was the interaction and mutual dialogue between physician and patient.  My new ENT appreciated that I was a knowledgeable, well informed patient and said he learned a lot from my complex medical history.  While I don’t want to be too optimistic, I am really hoping this will be the beginning of some progress on the treatment of my now officially diagnosed eustachian tube dysfunction and chronic sinusitis.


  1. So glad to hear you may get an answer here! I know the weariness of fruitless appointments!

  2. Thanks so much Anita! Yes those visits can be so draining and disappointing. Fingers crossed.

  3. It's great you find someone who listen ! That makes all the difference.
    And thanks for your post, I have ears problems too, I think I will talk to my doctor about this.

    1. Finding someone who will listen is definitely half the battle. It has been such a difficult health issue to get medical help for because my ears have problems both impacting the eustachian tubes and the nerves. Both can be quite painful. I will keep providing updates on this topic and I hope your doctor helps.

  4. Just read this. Hope you are seeing some improvement in your eustachian tubes, etc.

  5. So the bigger question is, how to actually treat an eustacian tube whose mucosal lining is being destroyed by SS. If the mucosal system within the eustacian tube is being destroyed, all of these efforts are like band-aids till it flares back up. I am suffering through this exact same issue as I type this. How do you repair the mucosal system in there? Steroids just reduces the inflammation till the immune system kicks back in and starts the entire process over again. I'm curious how you've fared since posting this originally.