Semicircular Canal Dehiscence Syndrome

minear · Newbie Joined: 23 Jan 2005 Posts: 11

Hi, I’ve been feeling strange in the last few months. I didn’t know what was causing vertigo and nausea, so I went to a doctor. He did some tests but nothing showed that there’s anything wrong with me. For tomorrow, he plans to send me to vestibular evoked myogenic potentials (VEMP), to check if some of my bones are damaged and if I have Superior canal dehiscence syndrome. Could this really be the cause of these symptoms?

clotilda · Silver Member Joined: 21 Oct 2000 Posts: 270

Hello, I had superior canal dehiscence syndrome. It s a balance disorder caused by a hole in the bone overlying the superior semicircular canal within the inner ear. This opening is not normal, and it causes vertigo, nausea and vestibular hyperacusis. It’s no wonder that they haven’t managed to diagnose you yet, because it’s very hard to find this tear in the bone. I remember, when I went through all these tests, it took a lot of time. First, they examined me regularly, then they sent me to CT scan, but it didn’t reveal the problem. Finally they sent me to vestibular evoked myogenic potentials, and I was diagnosed with superior canal dehiscence syndrome. A surgical treatment included patching the bone from inside the skull, and it really helped me in relieving symptoms of superior canal dehiscence syndrome.

TFWest64 · Newbie Joined: 06 Sep 2006 Posts: 1

Your surgeon/dr must rule out other possibilities. Nystagmus is a common sign for SCD and also a high resolution cat scan which shows the dehiscence/s. I have bilateral dehiscence and another vestibular disorder similar to meniere's disease. Having both of these vestibular disorders/disease I am not a candidate for the surgery as described above. Best Wishes and hope you find answers soon.

opportunafish · Newbie Joined: 14 Dec 2006 Posts: 2

Please reply if you are still looking for info about this. I had the surgery in Sept 2005, and it made a huge difference! This condition can cause a deterioration of one's quality of life over time. There is an SCDSsupport group on Yahoo with many present and former sufferers. It's very hard to find a doctor to diagnose this.

smanning · Newbie Joined: 05 Feb 2007 Posts: 1

Hello, I also suffer from SCDS and was interested in finding the Yahoo group you mentioned? Many Thanks

Kathy W · Newbie Joined: 22 Dec 2007 Posts: 2

Hello everyone. I posted a lot of information on Mindy Haine's SCDS Support forum scdssupport . org on my recent very successful Right Superior Canal Dehiscence (SCD) Surgery via a Middle Fossa Craniotomy approach which was performed by Dr. Lloyd Minor and Dr. John Carey at Johns Hopkins Hospital (JHH) in Baltimore on 11/09/07. Her forum has 85 members around the world and a ton of information and support.

It is important to note that there are other very qualified doctors who can also do this surgery throughout the world and many of the folks on either this forum or Mindy's have had great results with these doctors - regardless of the type of surgery performed. This is not to upset anyone who selects a different doctor or treatment plan, whether that be by firm belief in their own doctor's treatment plan, their geographical location, or financial options. Everyone's situation is unique and the decision to proceed with any surgery is and must be very personal.

After doing extensive research both on the internet, reading lots of medical papers by several doctors, I felt very confident selecting the Johns Hopkins Hospital team. Dr. Minor, who is also the Director of the Otolaryngology Department, discovered this illness nearly a decade ago. Dr Carey developed an imaging system to really hone in on the exact area before and during surgery, and believes this tool has been instrumental in their high success rate. Both have performed each and every surgery in tandem without much modification for the past 5 years.

Be aware that medical opinions differ widely. Most doctors use the middle fossa craniotomy approach (and even this is done differently depending on the surgical staff and hospital equipment), some doctors are doing the transmastoid approach (although every one I've run into had a lot of post op problems with this approach and weren't happy with the results), and I hear recently that some doctors are experimenting with less invasive procedures. SCDS study is still very new and data is still being collected. A recent study of 1000 cadavers showed only .5% with dehiscences. This is considered quite high in the medical field and I suspect we will be hearing about this disease more and more in the future.

Each individual's dehiscence can be very different. Some have a straight forward slit or hole directly over the superior canal, which can be very easy to plug. Some have more than one hole. Mine was a single 3mm slit, 1mm wide with no damage to any other area. The bone over my middle ear was completely intact and there was no "swiss cheese" affect. My hearing was good, and I had had no prior surgeries.

Those patients who have had prior ear surgeries may have a harder time recovering their hearing. The inner and middle ear sections are a hyper sterile environment. Once open it can allow the opportunity for white blood cells to enter and attack the ear which can killl off the hearing and balance system. This is something that everyone who has had prior surgery should discuss with their doctors in detail, as this may affect the level of results and possibly their hearing going forward.

While diagnostic tests (ENT, VEMP, and CT) will confirm SCDS, not everything shows up on the CT scan, not even scans done at .5mm in the recommended both planes. NO doctor will really know what they are looking at until they are in there. The inner/middle ear ear is only the size of a dime. The bone over the superior canal is about the width of a tooth pick. Dehiscences having a "swiss cheese" affect are very difficult to detect until they have the "hood open" and can see the entire area. While this type of dehiscence can be successfully repaired, it requires more work to make sure they get all the holes covered. The swiss cheese scenario is very hard to correct via the transmastoid approach, as you need to see the entire landscape to get them all. If a middle ear is found with any bone loss, or blood was allowed to enter this region, the access is simpler through a middle fossa craniotomy. My analogy on this is, do you really want to access an engine from the radiator? or just open the hood and be able to get to everything. This is not to say that these areas can't be repaired with a transmastoid approach or other procedure. But from purely a layman's point of view, I just feel it makes it harder to work cleanly, especially if complications present themselves. Everyone's body is unique and this is even more so with SCDS.

Lastly, I'd like to say that each person's body will react to surgery differently. That is true for ANY surgery. A Craniotomy is very big deal. It will stress and shock even the strongest body. Your body may be a real champion or there may be underlying issues that you (and your doctor) aren't even aware of. I had an ideal situation, snapping out of anethesia fast and clear headed. I also have a high pain threshold, so I didn't require any pain medication. Everyone's body will react to anethesia, pain medication, and trauma differently. I felt confident that the care I received 24 hours in Neurological ICU and then 24 hours in the step down Brain Recovery Unit at JHH assured the very best scenario should a bad situation occur. And luckily I didn't need any emergency assistance, but if I did, these folks are prepared for any event.

Good luck to all of you who choose the middle fossa craniotomy approach, no matter which medical team you select. Take your time in selecting a surgeon, but don't wait too long as your symptoms will only get worse, your sanity will be stressed, and your body will only become weaker due to reduced activity. You'll also want to be as well informed as you can, and ask lots of questions - of everyone.

For me the surgery was definately worth the risk. I can be around all types of sound now without any reaction and as such, feel like I have been given my life back!

Kathy W

MollieRT · Newbie Joined: 27 Jun 2008 Posts: 2 Location: WV

I too have been diagnosed with Superior Semi-Circular Canal Dehiscence Syndrome. It's very scary !!! I'm on megadoses of Prednisone for 2 weeks to see if it helps. I'm planning on putting off surgery as long as possible, I don't even want to think about that right now.

Guest · Guest

I was recently diagnosed with Superior Semi-Circular Canal Dehiscence Syndrome. It has take over a year and too many trips to too many specialists to count to finally come to this conclusion. At one time I was set for surgery for trigeminal neuralgia, which would have permanently changed the feeling on the left side of my face. It has been a long and difficult battle because I have not presented with documented symptoms. While I do have some symptoms such as sever sensitivity to certain sounds, hearing loss, dizziness, these were not my main concern. I awoke a year ago with horrible ear pain. It was originally diagnosed as an ear infection which cleared but the pain never left. Every day it feels as though my ear drum is going to burst with a constant throbbing with every heart beat. Sadly, I believe due to my age, (I am in my mid-twenties) having bi-polar, and my clumsy past, it has been an up hill battle to get any doctor to believe me. Just getting someone to treat me for the pain was difficult enough but it took my tenacity to finally get my diagnosis. I am scheduled for surgery in August.
I am not writing this so much to complain as to get it out that obviously not everything is know about this syndrome yet. More studies need to be done and doctors need to realize that not everyone will fall into the neat little list of symptoms. We need to learn more about this problem and give the information to make a correct diagnosis to the doctors that are supposed to treat it. When I was diagnosed I was told to go on the internet to learn more about it. I find this appalling. I hope no one has to go through the hoops I have had to, to get help. They are doctors it is there job.
If your find that you are running into a wall when it comes to something you know is wrong please keep going until you find the truth. May God bless you and keep you.

leilahutch · Newbie Joined: 04 Aug 2008 Posts: 1

I am looking for someone who has been diagnosed with Superior Semi-Circular Canal Dehiscence & Tullios Phenomemon experiencing or has experienced complete fullness of the ear. I was diagnosed 1 1/2 years ago and since then I have had my ear drum patched. This did nothing to help. I have had tubes placed in my ears. This does not help. I feel that the fullness has gotten worse. Tests indicate no hearling loss but I know that what I am hearing is very different than what I am used to. I am or rather was a singer and now I can not hear the music around me when I sing so I basically can not perform. I only hear myself and it is just frustrating. Describing the fullness is frustrating as well because it is hard to verbalize. I am contemplating having surgery and I am curious if anyone who has had the surgery had fullness of the ear and now does not? My doctor is not 100% confident that the surgery will remedy this and it is the most troublesome of my sypmptoms. Any insight would be great!

embeckben · Newbie Joined: 04 Aug 2008 Posts: 2

I have just been diagnosed with SCD and its like the last piece of a huge puzzle has just been put in place. I have had horrible symptoms probably for the last 15 years and has been getting steadily worse. I have been investigated for other things (always negative) so it has taken this long to find it. Since starting uni 2 years ago I've noticed my bad hearing and had a hearing test and the results were so bad I started having scans! Have been told I also need a stapedectomy which is being done in two weeks and I'll be assessed after that to decide on the SCD treatment. It has been such a HUGE REVELATION AND RELIEF to finally find out what was causing all my symptoms - I really did think I was going mad at times! I can't wait to get all the surgery done and to finally feel NORMAL again after so many years!!!

Semicircular Canal Dehiscence Syndrome

LIFEFORM SOCIAL COMMUNITY NETWORK