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Superior Canal Dehiscence Syndrome Post Op Update 2

(I have reposted this article that appeared on my old site because it was a popular page and I don’t want it to get lost when I shut the old site down…..so here you go.)

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Hi again folks,

My crainiotomy surgery was one month ago yesterday (5/20/2010) – wow.  So I thought I would give you a little update, including anyone out there who might be diagnosed with SCDS and considering surgery.

As you know I was in surgery Thursday May 20th all day from 8:30 am until 6:00 pm….Then I was in ICU for a day and a half and finally got discharged from the hospital on Tuesday, May 25th.

At the risk of being redundant, but for the benefit of anyone on the Internet reading this who might also have SCDS and had or will have the surgery, here is a bullet list summary of my post-surgical experience:

  • As far as I can tell everything is healing nicely and the SCDS plugging and resurfacing was a success and is staying in place as intended.  I have noticed since the surgery that I no longer have persistent sinus drainage which we now believe was a slow CSF leak, which is now patched.  This is a big plus as well as a reduction of my risk of contracting something serious such as meningitis.  Until the healing process is complete and I am done with balance therapy I won’t be able to know how much the prior dizziness and blackouts have improved, but theoretically they should now be better.
  • I have been unable to hear in my left ear Day 1 post op to present.  At first this ear was 100% dead.  As of today it is still mostly nonfunctional, but every now and then I hear what sounds like bubbles popping and I am pretty sure I can hear the telephone dial tone very, very faintly.  I also hear constant hiss or tinnitus in that ear.  So, we are hoping and praying that there is still a little bit of life left in there which will slowly come back or at least be available to additional medical intervention.
  • The spinal headaches are GONE.  I had these from Day 1 post op to Day 5 post op.
  • I was VERY dizzy Day 1 post op for about 2 weeks.  The dizziness has gotten better steadily, but I still get dizzy pretty easily and it is easy to lose my balance.  This is a retraining period that my brain is going through to deal with the loss of the superior semicircular canal.  I started balance/vestibular therapy this past week and now have “homework” to do every day.
  • My vision has improved back to normal.  Initially I was unable to see or focus on things steadily, especially things more than 5 feet away.
  • Part of my balance therapy is to walk every day.  I am now able to walk 2-3 miles.  This sure beats the first few days when I found I needed a walker which scared the heck out of me!  I still get really dizzy pretty easily when I walk so I have to be very careful when I do this in addition since I am only hearing out of one ear it is easy to get surprised by vehicles approaching me from behind.
  • I got all of the 35 staples removed two weeks ago and my hair is starting to grow back….it’s about 1/2 inch long now and I am almost a hippie.  I still have what looks like a bullet hole scar on my forehead from where they screwed on the head frame contraption during surgery to make sure my head and body did not move lest the accidentally cut the wrong thing.  This was a good idea.
  • I am still not allowed to drive and I don’t know when that restriction will be lifted.  Driving is dependent on how I do in the balance therapy and how my eyes and mind are able to respond to movement and my ability to read during movement.
  • I am still limited to not lifting anything over 10 pounds, but I hope that gets rescinded soon as there is a lot of work piling up around here that will need to get done.  In the mean time I keep trying to ignore it and focus on other things that I can do.

If you have SCDS and have any questions feel free to contact me and I am happy to talk to you.

-Chris

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