6 weeks post-op results

I’m now at Community Coffee in Baton Rouge, having just finished my 6 week post-op follow-up appointment with Dr. Gianoli.  Short summary: he’s given me a clean bill of health and I’m ready to resume normal activities (though he doesn’t want me to really exert myself for another month).

To bring the occasional reader up to date…

Last week, I went back to week after being off for 7 weeks.  It was a bit of a challenge, and I found that I tired easily.  But I think things are continuing to improve.  I haven’t had any balance issues for about 4 or 5 weeks.

My hearing in the right ear (the one that was operated on) seemed to me to be as good as the left ear, and today’s hearing test proved it: hearing in my right ear is actually better now than before the surgery!  I know some of you are thinking, “But wait, didn’t you get ear surgery because of hearing problems?”  Well, yes I did, but the problem was that I was hearing too much.  My voice, my heartbeat, and other sounds in my head and body were way too loud in my right ear.  The surgery has definitely fixed those problems, which are called autophony.

I flew from Denver to New Orleans yesterday, because it’s quicker than flying from Denver to Baton Rouge directly because there are no direct flights to Baton Rouge.  I was nervous about how my right ear would react to the pressure changes of going up and down in the plane, but it was totally anticlimactic.  In fact, I think I noticed my left ear popping more than my right one.  In fact, things went so well with the pressure changes that I thought maybe the hole my doctor cut in the right eardrum 5 weeks ago still hadn’t healed over.  But when he looked today, he said the eardrum looks awesome.  He saw a little scar, but that may very well be from the tube I had put in years back when I was (mis)diagnosed with endolymphatic hydrops.

Also, Dr. G had me re-do a test called an ECOG (short for electrocochleography).  Before the surgery, my results were abnormal (due to the superior semicircular canal dehiscence).  Today, after the surgery, my results are normal.  Apparently, this bit of knowledge – that SSCD surgery also fixes ECOG problems – isn’t widely known, and Dr. G is gathering enough test results to write a paper on it.  He said he’d do the test for free, and I wasn’t in a hurry, so I agreed to be a guinea pig for him.

Finally, the doctor says my wound is healing up nicely.  Beth has been putting anti-scar cream on it most days since the surgery, but because the scar is covered by hair and the outer ear, Dr. G doesn’t think it’s a big deal to continue the cream past the first few weeks.  So, he left it up to me to decide whether I wanted to continue with the cream or not.  I’ll probably just drop it, since our routine has been for Beth to put it on me after she put the antibiotic drops in my ears.  But I don’t need the ear drops anymore since my eardrum is healed.

Oh, and I took Dr. G and his staff a thank you gift – two pounds of Enstrom’s Toffee, which is the best candy produced in Colorado.  They were very appreciative.

Next steps:

Followup in 6 to 9 months – 6 months if I’m having issues, 9 months if I’m not

Find an anaestesiologist near home and schedule a spinal tap to measure my CSF pressure and drain me if needed

Continue to take Diamox for the next year (yuck), to keep my CSF pressure down

Complete the sleep study to find out if I have sleep apnea (one possible underlying cause of high CSF pressure)

Continue to do lots of walking to get my eyes, ears, and proprioceptors (the three inputs to the balance system) working well together again

Get a blood test to make sure the Diamox isn’t doing weird things to me (I read one side-effect is lowered potassium)

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Categorized as Ears

7 comments

  1. TODD, I CALLED YOU THE DAY YOU RETURNED HOME. MY AUTOPHONY IS DRIVING ME CRAZY. I HAVE HAD 4 SURGERIES ON MY RIGHT EAR AND 2 ON MY LEFT EAR. I DEVELOPED A FUNGAL INFECTION IN THE LEFT EAR AND AN ALLERGIC REACTION TO LEVAQUIN LEFT ME WITH TENDENITIS, THEN A STAPH INFECTION. I HAD MY TUBES REMOVED ON 12/18/08. I TOOK OFF WORK A MONTH AND HAVE BEEN BACK 2 WEEKS. I STILL HAVE SEVERE HEADACHES AND THE AUTOPHONY IS STILL IN BOTH EARS. I AM PLEASED YOU HAVE HAD SOME GOOD SUCCESS WITH YOUR PROBLEN. I ALSO HAD A BLEED BEHIND MY RIGHT EYE DUE TO PRESSURE. I GO BACK FOR A CHECK UP ON APRIL 22,2009, I DON’T WHAT WILL HAPPEN THEN. GOD BLESS YOU AND GOOD LUCK.I HAVE BEEN GOING TO SHEA CLINIC IN MEMPHIS KNOWN ALL OVER THE WORLD. MY SYMPTOMS STARTED IN 2007. MY VOICE IS A WHISPER AND HEARING MYUSELF CHEW AND MY HEART BEATING YOU KNOW THE REST.

  2. Hi Todd, I just visited Dr. G and I too have the CSF pressure problem and vertigo. How are you doing? Is the vertigo still gone.

    Angie

  3. Hi, Angie. Fortunately, I never had serious problems with vertigo. At the worst, it was very mild compared to what most people with SCDS have.

    My CSF pressure is still inexplicably high. We tried to figure out why, but didn’t succeed. Right now I’m just continuing to take 1 Diamox each day. I’ve noticed that the autophony symptoms in my left (unoperated) ear go away after I take a Diamox.

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