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

Superior Canal Dehiscence Syndrome Post Op Update

(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 family, friends and fans,

This is just a note to let you know that I am still alive and survived my surgery!!

I was in surgery last 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 of this week.  I hope to be able to be released from doctor’s care in early July.

Unfortunately during surgery they found more “dehiscences” (medical term for a hole in your head…..) besides the one they had already visualized through the superior canal bone via the CT scan.  The other dehiscences were in my mastoid bone…..they could not see these particular dehiscenses from the CT scans.  Basically I had perforations through my skull base and I was leaking cerebral fluid out of my head into my inner ear and sinuses.  Very appetizing, I know! LOL.  Among other things, this could have caused me to get meningitis if not corrected, but they tell me they got them all patched.  I also ended up with a cerebral spinal fluid leak and an air pocket that caused me the hugest headache I have ever had and took several days to get under control.  A lumbar “blood patch” did the trick, thank God, otherwise I would have been staying the night again at Hotel Swedish.  Home is good.  🙂

So, right now I exercising my faith in my surgeons and God as I currently cannot hear in my left ear at all except for sporadic very weird, “zinging” and “buzzing” sounds.  I could swear every now and then I can hear some kind of radio transmissions in my left ear as well!  I am serious! They tell my my they monitored my hearing during the entire procedure and that my sensorineural hearing is just fine and that right now the reason I cannot hear is because my mastoid bones and inner ear are full of fluid that should dissipate over time and they expect me to fully recover my hearing and have normal balance again once I am all healed in 4-6 weeks.  I also came away with one heck of a scar!  I told the surgeon I liked to play the bass and wondered if he could fashion a bass clef shaped scar!! He must of thought I was serious because  I think he came pretty close!! LOL! It’s very bad.  Here are some lovely pics for you at the bottom of this post.  🙂

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:

  • Unable to hear in my left ear Day 1 post op to present
  • Spinal headache Day 1 post op to Day 5 post op
  • Very dizzy Day 1 post op to present (this will be a longer term healing and adjustment process according to doc.  Position changes still cause me a lot of dizziness, especially driving in circles!)
  • Unable to see or focus on things steadily, especially things more than 5 feet away  Day 1 post op to present  (this has improved slowly each day.)
  • Nauseous  Day 1 post op to Day 3 post op.  (I’m glad that stopped!  The hospital actually had some really good tasting food.)
  • Able to get out of bed and walk with a walker by day 3 post op
  • Able to walk around hospital without a walker and use handrails by day 5 post op
  • Able to walk out to mailbox and back with my wife’s assistance by day 7 post op.   Now we will be gradually increasing my distance each day.
  • I have a post-op follow up appointment to have my 35 staples will be removed next Tuesday.

Pam and I would once again like to thank everyone who has stopped by the hospital, our house, called, and emailed and brought us food and other things.  Old fashioned thank you cards will be going out to you in the snail mail.  Thanks to all my family and friends for your love and generosity.

-Chris

Can You Hear Me Now?

Even if you can hear with your ears it is important to learn how to truly listen with all of your senses.

I lost all of my left side hearing as a result of craniotomy surgery because I was diagnosed with Superior Canal Dehiscence Syndrome (SCDS) a few years ago and have screaming tinnitus all the time and have been fitted with special “BICROS” hearing aids to help my right ear hear things going on to the left of me as well as take care of some minor high frequency loss on the right side. It has been an ongoing tweaking process with my audiologist to get the programming just right. I have hearing aids that have 4 programs for specific types of audio environments and they can listen and switch automatically to the appropriate program. Unfortunately, even with all of this technology, they are still a double-edged sword and at times go into feedback in response to some particular sound. There are days that I like them a lot and other days that I can’t stand them and I leave them on the shelf. I was quite depressed and frustrated with my hearing loss at first, but then I became more hopeful later as I accepted it as a new aspect of who I am. In addition, listening to the story of Evelyn Glennie, a deaf classical percussionist who lost her hearing when she was a child, inspired me a lot to really listen with all of my senses and I feel that today I am a better listener that I was when my ears were 100% functional. Besides Evelyn Glennie, another inspiring deaf musician for me is Hector Tirado, a deaf double bassist. I have included videos of both of these people below to help inspire you.

If you are losing your hearing, I recommend first of all having an exam by an ENT physician to evaluate you and then get a referral to some reputable audiologists. If you are also a musician, explain in advance that you are a musician and ask them if they have experience in working with issues unique to musicians.

Hector Tirado

[youtube]https://www.youtube.com/watch?v=QDdU2xUs4XQ[/youtube]

Evelyn Glennie

[youtube]https://www.youtube.com/watch?v=IU3V6zNER4g[/youtube]

 

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