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Old 04-17-2009, 12:22 PM   #1
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Surgery for Superior Semicircular Canal Dehiscence

I had been having some rather odd symptoms in my left ear which started around January 2008 (mainly fullness, hearing my own voice rather loudly in the left side of my head, and vibration when I talked). After it became obvious it wouldn't clear up on it's own, I finally went to the ENT in July. They convinced themselves it was allergies and I needed aggressive treatment for them. I tried telling them over and over that I knew I had allergies, and they weren't the problem. But they started me on a two-year cycle of shots anyway. I must say that my allergies have been GREAT since then, but it didn't make any difference to my left ear problems.

By November, my ENT basically threw up her arms and said she had tried all she knew to try. She said she could put a tube in, but there was no apparent reason to do so. Pressure tests were normal, no hearing loss either. I said if there was any chance of it working to go for it. So they did. As expected, no improvement. The last thing she did for me was to refer me to their otologist (inner-ear specialist). He did a CT scan of my inner ears, and after a five minute conversation with me, had my diagnosis. Superior semi circular canal dehiscience. Basically it's an extra opening in one of my inner ear canals...likely a result of the material being thin from birth and wearing thinner with age. If it wears through completely, the canal opens up and a host of odd and annoying symptoms follow. It's rather rare and only discovered in 1998, and therefore not an easy diagnosis. The good news...it can be corrected with surgery. The bad news...the surgery is not trivial.

I had to travel to UNC-CH for further testing, and when they confirmed it, I decided I'd rather go through with the surgery than live the next 40 years or so with this going on in my head. There are obviously risks with the surgery, but they were relatively small. The biggest risk to me was the fact that my balance would be disrupted, and it's impossible to say how much (or how soon) it would be regained. Being the eternal optimist, I figured I can get through that part ok.

Thursday, April 9 was the big day. Crystal and I drove to Chapel Hill (we had to be there at 6 am), and the surgery lasted from about 8-11. Everything went great from the doctors perspective. They had to create a big incision above my left ear, cut a hole into my skull, fill in the canal with some bone wax (whatever that is), and put it back together with a little titanium and a few stitches. From there, all they could say is the recovery should take from a week or to to a month or two.

I spent the first night in ICU with the worst hangover EVER. Throbbing headache, nausea, puking, etc. I'm sure you all remember at some point in your life hanging over the toilet making all sorts of promises to God about what you would do if he would just get you through this. Well, that's what it was like, but there was no toilet, and instead of it only lasting a a few hours, it lasted about 36! This was when I first really had to wonder if I made the right decision.

By Friday, they moved me into a regular room. I was miserable, but less miserable. The combination of oxycodone and nausea medicine thankfully kept me asleep most of the time. But I would wake up on occasion to try a few spoons of chicken broth. If you've never tried chicken broth, I wouldn't recommend it. Beef broth is even worse. And during the Saturday-Sunday time frame, the left side of my face was swollen to the point where Crystal said my kids wouldn't have recognized me.

As far as that overall crappy feeling, Saturday was a little better than Friday, and Sunday a little better than Saturday. I finally felt like I could stroll the halls in my sexy hospital gown on Sunday, but it had to be a short walk. I wouldn't say walking made me dizzy, but very much unstable. And By Sunday evening, the swelling had gone down a lot.

I hadn't had nausea all weekend, but for some reason woke up with it Monday morning. I had to pass on breakfast in lieu of something in my IV which made me feel better. Then, after a valium and a couple more oxycodone, they let me outta there! I was nervous about the long ride back to Wilmington, but felt amazingly great! Drugs can be a wonderful thing.

As good as I felt Monday afternoon, that's how bad I felt when I woke up Tuesday. The nausea returned, more hanging over the toilet, promises to God, etc. I was finally able to keep some medicine down about 2 PM Tuesday and have felt pretty decent since. I made sure to start the day off with a handful of pills this Wednesday morning, and will keep taking them on schedule whether I think I need them or not.

Anyway, that's my story. It's been an interesting few days to say the least!

 
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Old 04-17-2009, 04:18 PM   #2
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Re: Surgery for Superior Semicircular Canal Dehiscence

i wish you all the best with a speedy recovery. do u think you're on the mend now? don't know much about SCD but i have a thinning bone on my left side.. although have a fistula on the right which is my main issues.

all the best,

christine

Last edited by moderator2; 04-18-2009 at 07:48 AM. Reason: posted disallowed website(s) - please read the posting rules

 
Old 04-18-2009, 04:30 PM   #3
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Re: Surgery for Superior Semicircular Canal Dehiscence

Yes, I definitely think I'm on the mend now. It took a few days for me to actually believe surgery was the right decision. Recovery is purely miserable with dizziness and nausea. But now, after 3-4 days of feeling just plain terrible, each day is a marked improvement from the previous one. I still have a little ways to go, but the worst is way behind me and I have no regrets whatsoever. Now, having said that, I am 38 years old. If I had been over 50, the decision to have the surgery may not have been as easy.

 
Old 05-12-2009, 04:12 PM   #4
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Re: Surgery for Superior Semicircular Canal Dehiscence

Just to update, it's been just over a month since the surgery. I went back to work last week. My work is in an office setting and not labor intensive, but just the fact that there was more activity going on around me made me a little dizzy after a couple of hours. I had been rationing my valium prescription just in case this happened, so for the first 3 days back, I took one. It worked. After 3 days back, I was able to get through the day without the dizziness. I do get an occasional tension headache, especially later in the day, but I'm used to that so no big deal. I do still have a constant low-level ringing, but I hardly notice it during the day, and at night, well, I don't hear it when I sleep! Maybe it will go away one day, but it seems to have reached a constant level over the last week or so.

I still have pretty significant balance issues, but mainly this is when I'm not looking in the direction I'm walking. By that I mean that I can't easily walk in a straight line if my head is turned sideways or up. For some reason, if I look left I end up walking towards the right. It's more humorous than a nuisance, though. But it does seem that even this is getting progressively better with time. I fully expect to be much closer to normal in a few more months. I haven't tried riding a bike again yet...not out of fear...I just never ride that much anyway.

As I've said before, if you're experiencing a few of the most annoying symptoms associated with SSCD, the trade-off is a no-brainer. Unless there's some specific activity that requires you to have complete balance and coordination, and you aren't willing to sacrifice it for 6 months or so (or not willing to participate in it at a lower level), I would recommend getting the surgery. I consider it a challenge to get back to where I was before. At least now I can look forward to the possibility of a nearly-complete recovery. Without the procedure, just the thought of living out the rest of my days under those conditions was extremely depressing...much less dealing with the physical symptoms themselves.

Now, having said all of that, I realize that each person is different and will heal differently. I also may have been more hesitant if I were older. If you're considering having this type of procedure, you should be prepared to trade your current set of symptoms for a different set that may be easier for you to live with. And your personality will make all the difference in the world. If you are generally optimistic, you will probably have an easier recovery. If not, you may be extremely frustrated afterward.

Me...I'm an optimist And I'm SO glad I had the surgery! Sorry if any of this post is redundant! I'll probably wait another month or two before posting again, so hopefully I can report on some significant improvements!

 
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Old 10-26-2009, 08:25 AM   #5
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Re: Surgery for Superior Semicircular Canal Dehiscence

I was diagnosed a few days ago. Do you have any updates on your condition you can share?

 
Old 10-27-2009, 05:30 AM   #6
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Re: Surgery for Superior Semicircular Canal Dehiscence

Sure! It's now been just over 6 months since my surgery. Up until mid-September (the 5th month) I had a lingering uncomfortable sensation in my head which was related to motion...mainly in my peripheral vision on the left side (where I had the surgery). This would make things like driving, or even walking around in a Walmart or Home Depot slightly unpleasant. I wish I could describe the feeling better. Swimmy-headed is about as descriptive a term as I can think of. Fortunately a 5mg dose of valium would clear this right up for the whole day. I had come to the conclusion that I may have to deal with that sensation forever, but things started improving again in late September. Now, most days I feel about 98% back to my old, normal self. Maybe once every week or so I need to take a valium for that uncomfortable sensation. That's pretty much it. I may be just a tad less "stable" at times, but that is hardly noticeable and not a concern for me at all. I am back to playing softball (which may have helped me improve starting in September), although I can't track down fly balls in the outfield quite as well as before. All things considered, I am extremely happy with the results of the surgery. The brain is an amazing thing and in my case, seems to eventually be able to compensate for the loss of the functioning ear canal. If you have some patience and optimism, you may be very pleased with the results of surgery.

 
Old 10-28-2009, 05:34 AM   #7
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Re: Surgery for Superior Semicircular Canal Dehiscence

Thanks so much for the update. Very glad to hear you are doing great. Which doc performed the surgery?

 
Old 10-29-2009, 02:18 PM   #8
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Re: Surgery for Superior Semicircular Canal Dehiscence

Dr. Craig Buchman at UNC Chapel Hill performed the surgery. He was great!

http://www.med.unc.edu/ent/faculty/clinical-faculty-1/craig-a-buchman-md-facs

 
Old 11-17-2009, 06:42 PM   #9
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Re: Surgery for Superior Semicircular Canal Dehiscence

Quote:
Originally Posted by Big 8900 View Post
I was diagnosed a few days ago. Do you have any updates on your condition you can share?

What were your symptoms and what tests did they perform before they diagnosed you?

 
Old 11-18-2009, 05:40 AM   #10
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Re: Surgery for Superior Semicircular Canal Dehiscence

Quote:
Originally Posted by amexnikki23 View Post
What were your symptoms and what tests did they perform before they diagnosed you?
My otologist ordered a Cat Scan (CT). But you need an experienced physician to actually find the problem. Douglas Mattox with Emory University is the only doc in GA that is diagnosing and correcting.

Compared to others, my symptoms seem mild to average: I can constantly hear my heartbeat and breathing, some dizziness when I hear a loud noise, fullness of the ear. I also have PET - patulous eustachian tube disfunction. That is most likely why I hear my breathing. There is also a possible link between PET and a specific type of silent reflux called Laryngopharyngeal Reflux - LPR. Now taking 40 mg Aciphex per day. My symptoms began about 2 month after giving birth to my 2nd child. Other women on this site have also had the same experience.

This website provides a lot of educational info. Be sure to do your homework regarding how you want to move forward with correcting your condition. Good luck!

 
Old 11-19-2009, 11:35 AM   #11
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Re: Surgery for Superior Semicircular Canal Dehiscence

Quote:
Originally Posted by Big 8900 View Post
My otologist ordered a Cat Scan (CT). But you need an experienced physician to actually find the problem. Douglas Mattox with Emory University is the only doc in GA that is diagnosing and correcting.
My condition was initially diagnosed by my local otologist by a careful review of my CT scan. He actually missed it the first time he looked at the scan, then after he talked to me for a few minutes and I described my symptoms, he went back to take another look. That's when he saw the extra opening in the ear canal. At that point he said I would have to visit UNC Chapel Hill for confirmation (a higher resolution scan) and surgical options to correct it.

 
Old 03-23-2010, 09:51 AM   #12
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Re: Surgery for Superior Semicircular Canal Dehiscence

Just a quick update. It's been almost one year since my surgery. To sum up my recovery, I had most of my progress within the first 6 months. But for the last 6 months, I've pretty much reached a plateau. I'm left with some unsteadiness/dizziness that is most noticeable (uncomfortable) when I'm walking around a department store or shopping mall, outside across the yard or large, open space, or driving. I had just about accepted that this would be my new "normal", but I got back in touch with my doctor and he recommended vestibular therapy. After describing my symptoms to him, and speaking to a local vestibular therapist, I'm very optimistic that I can overcome this last issue. It sounds like my brain has become over-reliant on vision as a source of balance information, and vestibular therapy is very successful at correcting this problem (especially considering my age-39, and that I still have 5 functioning inner ear canals). The more I think about it, the more this makes sense. I never really noticed this before, but I tend to find myself looking down at the ground most of the time when I'm walking, and my symptoms are worse when I have to look up, or even simply straight ahead. When I get up in the morning and the room is dark, I have to have my hand on the bed until I get to the light switch, then all is well. I have my first therapy session today and can't wait! They said I could start seeing improvement in as little as 3-4 weeks, and I'll be sure to post the results.

 
Old 03-24-2010, 05:57 AM   #13
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Re: Surgery for Superior Semicircular Canal Dehiscence

Quote:
Originally Posted by crumii View Post
Just a quick update. It's been almost one year since my surgery. To sum up my recovery, I had most of my progress within the first 6 months. But for the last 6 months, I've pretty much reached a plateau. I'm left with some unsteadiness/dizziness that is most noticeable (uncomfortable) when I'm walking around a department store or shopping mall, outside across the yard or large, open space, or driving. I had just about accepted that this would be my new "normal", but I got back in touch with my doctor and he recommended vestibular therapy. After describing my symptoms to him, and speaking to a local vestibular therapist, I'm very optimistic that I can overcome this last issue. It sounds like my brain has become over-reliant on vision as a source of balance information, and vestibular therapy is very successful at correcting this problem (especially considering my age-39, and that I still have 5 functioning inner ear canals). The more I think about it, the more this makes sense. I never really noticed this before, but I tend to find myself looking down at the ground most of the time when I'm walking, and my symptoms are worse when I have to look up, or even simply straight ahead. When I get up in the morning and the room is dark, I have to have my hand on the bed until I get to the light switch, then all is well. I have my first therapy session today and can't wait! They said I could start seeing improvement in as little as 3-4 weeks, and I'll be sure to post the results.
You and I must be living the same life. For years I have always looked down while I walk. So much so that people comment. It makes walking more comfortable. I plan to have surgery in July/August. Sounds like I may be a candidate for vestibular therapy also. Thanks so much for the update!

 
Old 03-25-2010, 11:34 AM   #14
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Re: Surgery for Superior Semicircular Canal Dehiscence

Quote:
Originally Posted by Big 8900 View Post
You and I must be living the same life. For years I have always looked down while I walk. So much so that people comment. It makes walking more comfortable. I plan to have surgery in July/August. Sounds like I may be a candidate for vestibular therapy also. Thanks so much for the update!
Are you having surgery for superior semi-circular canal dehiscence? If so, where are you having it done? Hang in there. It's a tough first couple of weeks after surgery, but it will be worth it. My only regret is that I didn't start vestibular therapy a long time ago! It should be a no-brainer. If one of your ear canals will no longer function, you must reteach your brain how to process this change in information. The therapist compared it to rehabilitating after a stroke (but obviously it's not as bad as that). I've been doing the exercises the therapist recommended for 3 days now, and I am already feeling improvement! Basically, it's just a lot of moving my head around, especially while I'm walking. Just exactly the sorts of things I've been avoiding now for almost a whole year!

 
Old 03-26-2010, 04:01 AM   #15
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Re: Surgery for Superior Semicircular Canal Dehiscence

I plan to have surgery this summer at Emory in Atlanta. Dr. Mattox is my saving grace. I was diagnosed in October, 2009. The months since have been difficult. My plan was to have the surgery asap, but I have to wait for FMLA eligibility. In this economy I can't give my employer any loophole to let me go. My department has gone through downsizing. I plan to mention the therapy to Dr. M. It was never mentioned during my visits, but I was more concerned about the actual surgery and the few weeks following. Thank you so much for the information. Take care.

 
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