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.)

+++++++++++++++++

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.)

++++++++++

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

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!