superior canal dehiscence syndrome (SCDD)

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Hey folks,
Just received a diagnosis of scds a few days ago. This condition
was extremely difficult to find. Required multilple CT scans and
a lot of time. Anyway, they tell me it can be surgically repaired
and the success rate of the surgery is very good. I'm headed
to Salt Lake City in two weeks to have the resurfacing technique
performed. I'll post again after the surgery and let you know
how it all came out. In the mean time, if there is anyone out there
thats had any experience with the University of Utah's resurfacing
procuedure I'd sure appreciate hearing about it. Thanks.

donegalpunk · Newbie Joined: 03 Jun 2007 Posts: 3

I was diagnosed with SCDS and had the surgery at JHU by Lloyd Minor. I checked in early Friday and was discharged after lunch on Sunday--no kidding. It took about two weeks for the post-op dizziness to pass completely. Before the surgery, I had all the symptoms--heartbeat kept me up at night, eyes blinking; the sound of my own voice caused vertigo. The fullness in the ear was annoying but not as bad as the dizziness caused by loud sounds--when our building's fire alarm went off, I had to put in ear plugs and be led down the hall. Terrible stuff. Since the surgery, I have had none of the side effects that are possible. No loss of hearing or balance--my hearing tested just as good (I have really good hearing) after the surgery as before. I could not be happier--Dr. Minor changed my life.

Aladdin · Newbie Joined: 17 Jul 2007 Posts: 2

Greetings, I pray my words will find you well. I believe Sigrun is currently undergoing treatment at John Hopkins. To those who underwent surgery, which type did you receive? superior semicircular canal dehiscence
MIDDLE FOSSA CRANIOTOMY or TRANSMASTOID REPAIR? Did you have bi-lateral dehiscence. Research had indicated that normally the left ear is worse than the right but my right ear has the worse dehiscence. My left ear is thinning and possible dehiscence but also exhibits Meniere's symptoms. What is your biggest complaint prior to the surgery. My vertigo is noise and pressure induced, nystagmus and current drop attacks are common. I will be undergoing the transmastoid repair for my right ear. I have other questions if anyone would be willing to answer; I'm trying to do some research on my own. I was diagnosed june 4 2004 and have had vertigo literally every day since.

hugs/prayers
xo Very Happy

Aladdin · Newbie Joined: 17 Jul 2007 Posts: 2

ps; there are many different abbreviations for semi-circular superior canal dehiscence but the consensus now is SCDS superior canal dehiscence syndrome -

xoxo

hugs_mindy · Newbie Joined: 03 Aug 2007 Posts: 1

In 2003 I created a support group for SCDS on Yahoo groups. Recently, we moved that group from yahoo to it's own website and forum. Since 2003 the group has grown to 85 members and the information shared has become invaluable. Please visit the group at **edited by moderator ** web addresses not allowed**

The moderator's wont allow a web address or email address on this forum...which really limits the help that can be provided here. I don't quite understand, but I'm sure they have their reasons. Searching my name and SCDS should yield the site I'm referring too.

Hugs,
Mindy Haines

donegalpunk · Newbie Joined: 03 Jun 2007 Posts: 3

I received the MIDDLE FOSSA CRANIOTOMY on the left side.

I do have bi-lateral dehiscence and do currently have symptoms in my right ear.

My vertigo was noise and pressure induced as well, also induced by the sound of my own voice (I'm a singer and a professor). When I would speak loudly enough to be heard by a large room of students, I would become dizzy. Post your questions here. I cannot possibly be happier with the results of the surgery.

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

Hello everyone. I posted a lot of information on Mindy Haine's SCDS Support forum 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

SuzyH · Newbie Joined: 06 Jul 2008 Posts: 1

I've only just come across this web site. I'm from N West England.
I noticed dizzyness a year and a half ago. After much tests and a few consultants, I was sent for a CT scan and diagnosed with SCD. I had the operation on the 28th May 2008. I was told I would be discharged the day after - however I wasn't able to walk unaided until 1st June and only sent home from hospital on 2nd June. I have suffered terrible dizzyness since the operation. If I had to mark it on a scale 1 being good then my dizzyness prior to the operation was a 5 but now I'd say it is a 9. I haven't yet started back in work - so it's now been 6 weeks!! Work aren't very happy with me. I was never pre-warned that I could be this bad. I am on anit-sickess tables and constanly feel dizzy and sick. I am unable to drive and have terrible headaches. I have been told that the operation was a success but I have still yet to see the benefits. I just wish I was warned about the recovery time prior to the operation - it would have made me more prepared.

It's really difficult to know when I will be ok but because it is quite rare my consultants and doctors can't really give me any dates or gaurantees as with each patient they are building up a picture for the next patient.

I am a person that worries for the world and I worry that my works either think that I am stretching out the time off work or think that I am a liability.

I have a 5inch scare in my head from my left ear upwards and off course my hair is shaven in this area to. All this doesn't bother me - I just hope it was all worth it.

Is there anyone who has had the operation and has also experienced difficulties like I am facing?

Sue

Tad S · Newbie Joined: 27 Aug 2008 Posts: 1

Hi, I was suffering from SCDS in 2002 had a CAT scan and was diagnosed and told that surgery was available for the condition - it had been bothering me for at least half a year before I had it diagnosed - but between the time that I made an appointment with the doctor and the time that she saw me, the problem started clearing up on its own. My conditionwasn't as bad as some of read of, where the sufferer's own body noises are hyperamplified ( though I did notice my pulse was quite audible in the afflicted ear) The surgery for this condition (if I'm not mistaken) involves exposing the skull where the thinness/dihisence is, scraping the bone (which stimulates the bone to repair itself, and thus make itself thicker). I was on a playground at my son's school and got whacked on the SCDS side of my head, quite hard. Not to make light of a serious condition, but I believe my own problem was serendipitously solved by getting hit by a basket ball on the side of the head. The thin area of the skull received a trauma, which stimulated the skull to repair itself.

superior canal dehiscence syndrome (SCDD)

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