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.

Please Click here to check out my music!  Thanks! 🙂

-Chris

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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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Not Rocket Science, But It Is Brain Surgery

(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.)

Hi everyone,

This is to let you know that I will be off-line for a little while. On Thursday, May 20, 2010 I will be having a craniotomy surgery. I do not have cancer, but this is still a major operation, I will be in the hospital the better part of a week and recuperating for 3 to 6 weeks. They will be repairing a “superior canal dehiscence”….basically they discovered that I have a hole in my skull base allowing my brain to be exposed to my inner ear which has been causing me dizziness issues and hearing loss.

master-ear1

Over the past 5 to 10 years I began to experience hearing loss in my left ear. I first noticed this when I realized I was not hearing my clock radio in the morning and it was more than willfulness to play hooky. This condition caused me a lot of frustration as a musician as I began to have trouble not only hearing external sounds but it was becoming hard to hear my own pitches internally. I could not figure out what was wrong at first. I kept thinking, “What is the matter with me that I can’t find these pitches when I want to!?” On top of that I began having other strange symptoms like if I heard a loud sound or sang very loud myself my left ear would “reverberate” or kind of jangle and echo, but not my right ear. Loud sounds would also make my left ear ache very badly and radiate out around the side of my face. Besides these hearing issues I had other odd things that would go on….for example if I called someone on the telephone, as the phone rang in my left ear my eyes would vibrate and whatever I was looking at would shake in synch with the telephone ring! But this shaking only happened with the phone on my left ear and not my right. I was never sure why that happened, I thought it was kind of strange, and I wondered if everyone was like that. LOL! To top it off, I often ended up feeling dizzy and losing my balance and if I squatted down to look at something or work on something for a minute or two when I stood up I would get very dizzy and at times felt like I was going to pass out. I did not know what was wrong or why an otherwise very healthy guy would have such weird and annoying things going on.

But the most annoying thing was the hearing loss. Since music means the world to me, I was determined to find a way to restore my hearing. So I began getting hearing tests to try to discover what exactly was causing the hearing loss. The hearing tests showed that my mid and high frequency hearing was very good for my age, but I had a 35-40dB low frequency loss on only my left ear. This is called a “conductive hearing” loss because the middle ear bones which conduct the sound waves to the inner ear were not working correctly, so they thought. There are surgical repair techniques available to fix the problem and restore the conduction path, but when this was first discovered in me my ENT told me that it was too early to consider surgery for me and that they would need to observe me for a few years and retest to determine if the condition had stabilized or was continuing to worsen. In the mean time, they suggested that I try a hearing aid and see how I liked it.

I tried the hearing aid beginning in 2007. At first it was very embarrassing for me to wear in public. Call me vain! But once I got used to it, it was a mixed blessing. It did increase my hearing ability, but its ability to discriminate sounds was limited and especially in public, loud environments it was very hard for me to separate a person speaking directly to me from all of the background noise. So, I was on again, off again with the hearing aid for a while.

Finally, early this year I decided to try to seriously pursue the surgical repair technique. I went back to see my ENT again. He retested me again. We agreed I finally was a candidate for a stapedectomy procedure. But…..he said my test results were not exactly textbook….something was not quite right….so he decided to refer me to the absolute best otolaryngologist in Seattle. Well, to make a long story a little less long, he determined that my conductive hearing mechanism (middle ear) as well as my inner ear is just fine (that was the good news) but a specialized CT scan of my head discovered I have a hole between my inner cranial space and my inner ear allowing my brain to bump up against the vestibular canals of the cochlea acting as effectively as a “mute” (musicians should get this concept) as well as screwing up my vestibular system.

So anyhow, to correct this they will be performing a “middle fossa craniotomy” procedure to go in and patch the hole. (My dad used to ask me if I had holes in my head…) Essential, they will go in through my skull, move my brain over out of the way and repave the bottom of my skull. (technical terms) But they claim they have had 100% success on the folks that have had this surgery and no adverse events. The medical term for my condition is “left-sided superior canal dehiscence”.

Here are a few cartoon pictures to give you a general idea of what they are going to do to me!

middle-fossa1

middle-fossa2

middle-fossa3

middle-fossa4
The last picture shows a neuroma on the vestibular nerve, which I do not have…the neuroma, not the nerve…I am missing a piece of bone over the superior semicircular canal.

I will be having the craniotomy surgery on May 20th and will get to enjoy hospital food for most of that week. We have prayed about this and turned it over to the Lord. May he guide the surgeons’ hands. I have two top notch surgeons who will operate on me: A neurosurgeon and an otolaryngologist.

I hope I get a room with a view. I plan to be healed up and back to a normal routine within about a month after surgery. Life is too short, there is simply no time to waste!

More information than you ever wanted to know on superior canal dehiscence can be found at the web site of Dr. Timothy Hain (http://www.dizziness-and-balance.com/disorders/unilat/scd.htm). For the Über curious among you, a video of the surgery can be found here: http://www.otosurgery.org/sscd_surgery.htm

Thanks for your prayers and good wishes.

-Chris

PS

Finally, after the SCDS surgery and losing my hearing I began recording again.  Here is a link to a tune that is the first number with singing that I have recorded.  Nacho Mama!  Please Click here to check out the rest of my music!  Thanks! 🙂

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