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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?

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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.
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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.
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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.
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Hello, I also suffer from SCDS and was interested in finding the Yahoo group you mentioned? Many Thanks
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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
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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.
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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.
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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!
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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!!!
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I too have been diagnosed with Superior Semicircular canal dehiscence syndrome, all my problems started in May 2008- so I consider myself lucky that we actually got a diagnosis fairly fast. My ENT mentioned Dr. Lloyd Minor at John's Hopkins as the surgeon he would refer me to when I make the decision to have my surgery.
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Hello...I was diagnosed today with SCDS and I have to admit it's pretty scary. A CT scan finally revealed the diagnosis, after at least a year of testing, medications etc. My worst symptom is the fullness, and the swooshing heartbeat sound in my left ear. I don't have nystagmus, and very little dizziness, but definitely have issues with balance. I also had some vertigo at the beginning of all this, but thankfully, it went away. My doctor told me that I had a very thin layer of bone in my right ear, so I guess I don't have bilateral dehiscence, but I do have hearing loss in both ears. I would love to get some relief from the constant pressure and the hearing loss, but the word craniotomy sounds awful! The doctor gave me a prescription for papaverine - 150 mgs. 2x per day. I'm not really sure what results he's trying for, but I am willing to try almost anything non-invasive. I'm scheduled for a VEMP next week. I guess I would like some advice as to where to go from here. Did anybody try the Mayo Clinic in Minnesota, and if so, what were the results?
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Hi Everyone.
I am a 22 year old female and I live in Ontario. For the last year and a half I had constant pulsatile tinnitus. I thought I had an ear infection because I always had swimmers ear when I was younger. The clinic doctor I went to put me on medication and two weeks later I kept hearing the same noise. It was getting worse and more intense, it started to happen 24/7. I am in University and it effected my concentration and studying habits, I could no longer go out with my friends because loud music would irritate it and alcohol would worsen it. It really started to decrease my quality of every day life... it never stopped and nothing helped. I tried everything... sleeping on that side, creating white noise etc. The worst part was that no one had a clue what I was talking about. Although people say not to search online about your symptoms, I did anyway. I found out that I had a form of tinnitus that was fairly rare. I went to my family doctor and since it was not the objective form (where someone else can actually hear your tinnitus) my doctor made a referrel to see a specialist in London, ON.
After many CAT scans, VEMP, and various other tests... I finally had a CT angiogram that showed that I had Superior Semicircular Canal Dehiscence. I was relieved to finally have a diagnosis, but scared to find out that the option was either to live with it, or to have surgery. I was lucky in my case because my doctor told me that pulsatile tinnitus is often a symptom of something else, and finding out what the root of the problem is can take a long time.
My doctor performed surgery on me four months ago. Instead of a craniotomy - he does an incision behind the ear about 2.5 inches long and plugs the canal that way. I was the 8th individual to have this done by him. He has now done this operation on over 15 individuals and all of them have been successful. I was the youngest patient by almost 20 years he could not figure out why it had triggered in me so early. I spent 4 nights in the hospital and took 3 weeks off work. I was extremely dizzy after but that gradually went away. At first my ear had a feeling of "fullness" but I have 100% of my hearing back and it feels amazing. The pulsatile tinnitus went away and the vertigo is almost non existant now. My ear healed up very nicely and the scar is not noticeable at all. I am so lucky to have been put in contact with this doctor! If anyone is thinking about surgery... I suggest doing it. It was the best decision I ever made. If you need more information please reply I will give you details about how to get in touch with my surgeon. He changed my life and made me feel normal again.
If anyone is thinking about surgery I
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Hi! This is Andrew from Shanghai P.R.China.

I was diagnosed by a chinese doctor and Dr. Carey with the SSCD in 2007 by means of

CT(left ear hole and right ear thin); head shakes out of control(loss of sense) stimulated by stronging voices(2000HZ and 110DB); VEMP

what scares me so far is the strengthing voice from my body inside such as strengthing hearing from left ear during my speaking; hearing the rolling voice of eyes; hearing a little bit heartbeat.

I was recommended by the doctor only if I can not put up with the strengthing voice from my inside body.

It seems that the individual symptom varyes greatly and cases of surgery operation are quite rare, May I have more feedback from those persons who had that surgery?

Hope we can get through this problem(Maybe in the future this problem is common as that of cold and surgery is quite easy and secured).
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After years of many different doctors and lots of testing, I was diagnosed with SCCD in 2001 both at Walter Reed Hospital and by Dr. Lloyd Minor at Johns Hopkins. I had the mid-fossa patching surgery in late 2001 which failed after a few months, and the dizziness returned. The surgery was repeated in mid 2002, but this time the doctors ablated (purposefully destroyed) the superior canal before patching the area. After intense vestibular therapy to regain my balance, I had 100% function with no symptoms.

Unfortunately, after a year the symptoms began to return as increasing dizziness, which responded to more vestibular therapy and subsided. However, two years after the second surgery, the dizziness began to return and vestibular therapy only increased the symptoms to the degree that the therapists recommended I stop the therapy as it was degrading my balance instead of improving it.

Since 2006 my balance has worsened until now, I am constantly dizzy and and my balance has become "visually dominant" meaning my eyes have taken over as my sense of balance, competing with the constant sensation of "moving in every direction at once" I get from my semicircular canals. I have difficulty walking, amd cannot drive or even work. Head movements increase the dizziness and my balance is like a snow-globe that is easily shaken or disturbed, resulting in a chronic increase in dizziness and then extreme physical and mental fatigue.

To this date, no doctor (including Dr. Minor) has been able to tell me why I'm still dizzy. After 2 crainiotomies, I can say that surgery is no guarantee that your dizziness will be permanently cured. I believe that ablating my superior canal may be what is causing my constant dizziness, now. But, since no doctor can tell me why I'm dizzy, who knows? The only thing I do know is constant dizziness, nausea and disappointment from enduring the two major surgeries, all for nothing. So, the never-ending medical tests, blank looks from health care professionals and the oh-so-familiar chorus of "I've never heard of that disorder" from the medical world continues as I seek relief and hope for an end to constant dizziness and the possibility of a normal life...
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