Does anyone here have Superior Canal Dehiscence Syndrome

Miss SCDS · Newbie Joined: 29 Mar 2007 Posts: 5 Location: Iceland

Or do you know some one?

Have you had an operation?

Since this is such a rare syndrome (about 200 people in the world) Shocked

I am trying to find other people that have it.

Question

Do you know of any support groups? You can send me private message if you like.

Very Happy

Kind regards,
Sigrun from Iceland

Miss SCDS · Newbie Joined: 29 Mar 2007 Posts: 5 Location: Iceland

Woopsss..... unfortunately there is no PM on this forum Confused

And no one can give up an e:mail address here because the administrator then takes it out Rolling Eyes

I don't understand all these strict rules, don't understand the point, can some one tell me Smile

I am just trying to find people on the Internet that have this very rare syndrome that I have.... I am not trying to "steal" people away from this forum.

Regards

very confused Sigrun Razz

philippa thomson · Newbie Joined: 31 May 2007 Posts: 1 Location: Scotland

I saw your message just today, and have registered so that I could reply to your post. I have been trying to get a diagnosis for my condition for the past 3 1/2 years. It now looks more than likely that I have superior canal dehiscence syndrome. I saw a Consultant at Queen Elizabeth Hospital in Birmingham (UK) last week, and he says my CT scan looks very much like the one of a man he operated on a couple of weeks before. To be absolutely certain I have this rare disorder, I have to go back to see him again early July to have a VEMP test - an electrical test which should confirm the diagnosis, if that's what I have. At that point he will decide whether or not it is suitable to offer me an operation - I am desperately hoping he will, as I can't bear the thought of living with the symptoms any longer. I can tell you more about the operation if you need me to, and a website in America at the hospital where the condition is first identified properly. I have spoken on the phone with the doctor, Lloyd Minor, who is at the forefront of the research into the disorder.
My best wishes, Philippa Thomson

donegalpunk · Newbie Joined: 03 Jun 2007 Posts: 3

Hey. Funny thing that I just decided to browse around the internet today about SCDS. Saw your post. I was diagnosed with SCDS a bit more than 18 months ago went to see Dr. Minor at JHU. I got the surgery in March of last year and life has been great since--no side effects at all. Before the surgery I had autophony--heartbeat, blinking, knees moving, etc. It was bad enough to give me vertigo when I spoke above conversational level and the heartbeat kept me up at night. I had the surgery on a Friday morning and was discharged after lunch on Sunday--no kidding.

If you want more info, drop me an e-mail. I have no regrets.

Guest · Guest

I have scds and had surgery in 2003. I still have some side effects, but my life is a million times better than pre-surgery. I wanted to hear from others who had SCDS back when I was diagnosed, but couldn't find anyone. So I started a Yahoo group for SCDS and now that group has moved to it's own scdssupport.org website. Search my name and SCDS, you'll find our group. It's the best place to get to know other's with SCDS and to find out your not insane....your symptoms are real

Hugs,
Mindy Haines

starlight2705 · Newbie Joined: 04 Mar 2008 Posts: 1

Hi. I have just been diagnosed with SCDS. My surgeon (Mr Gerald Brooks) based in Harley Street, has suggested having surgery to 'plug' the canal. He has explained everything to me but I am very fearful of the operation as it is so close to the brain.
Can anyone who has had the surgery contact me with their experiences so I can decide what to do. I do want the repair but am a little frightened of the op.
I am a 39 year old male and have had the problem for 3 and a half years. Having seen 5 consultants of which one of them gave me 3 operations (Eustacian Tube and Gromets) I have finally been given a diagnosis. I have had a CT Scan and the VEMPS test amongst many other balance tests.
I would appreciate any advice and support from people who have undergone the surgey including recovery times, etc.
Thanks.

Guest · Guest

I've had 24/7 unsteadiness, stationary objects appear to move, slight nausea, and a decent amount of pressure in both ears for 6 straight weeks now. Can't believe some of you had it for YEARS before getting the surgery. My doctor diagnosed it on CT scan of my ears. My right ear is affected, maybe my left as well. Not high resolution enough. I can't do ANYTHING that increases pressure like go to the bathroom, blow my nose, cough, or sneeze. I am DEATHLY afraid of getting a cold because it ALWAYS goes to my head. He wants me to wait 6 months to see if the symptoms are manageable. If not, he said he could do the plugging. since emails and other info are not permitted here, I'll save this page in case anyone follows up. I'm so scared I don't know what to do.

I haven't any true "vertigo" episodes with this, and as long as that doesn't develop, maybe I can deal with this. But if that happens to me, there is NO WAY I can live with it. Something will have to be done. I wonder if simple ventilation tubes could help the pressure issue. Anyone try that if your pressure is bad??

Rich

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

I finally have a diagnosis of Superior semicircular canal dehiscence syndrome. I've been going crazy with ear ringing, fullness, sound sensitivity & some other crazy symptoms. My ear surgeon said it's an extremely rare condition, only about 200 people in the world have it. The thought of surgery scares me to death. I'm on massive amounts of steroids for two weeks to see if it helps.

Snerticus · Newbie Joined: 06 Jul 2008 Posts: 1

I don't know if I have this syndrome or not. My brother was diagnosed with Meniere's Disease. My father has recently started to have dizzy spells and "drop attacks" as in Meniere's but was not diagnosed. I have very brief dizzy spells that are triggered by loud noises, bright lights, very high contrast computer screens, and quite often nothing at all. But when they hit me for no reason, I'm usually perfectly still and only am moving my eyes. It started out as what I thought was a sinus infection, but with no other symptoms than severe pressure in my head, especially when I stood up from the sitting position. I did not yet have dizziness. This lasted about a month in August of 2006. Then the dizziness hit and I had pressure along with it. September, October and November showed the same symptoms. Everyday, brief dizzy spells with constant pressure all day. Funny, but when I sleep, it doesn't bother me at all - or more accurately - only very rarely. December, I didn't notice anything at all, but I worked 6 days a week for 12 hours a day the whole month, and I slept on my day off. So it was all a blur. January 2007 came and wham! Awful pressure and dizziness, migraines, nausea, frequent tinnitus, fullness in ears, and muffled sound. All throughout the day. Some days were better than others. February came and I got so frustrated that I finally went to the ER. I had bloodwork done at a mobile facility. Results were normal other than slightly high cholesterol. My blood pressure was high as well (130/90). Since I had (and still have) no insurance, all the ER did was a CT scan. I told them to include the sinuses. Normal.

I went to an ENT, who checked out my sinuses, but only visually, and had a hearing test. Everything normal. ENT says nothing's wrong, you probably have TMJ. Went to TMJ doctor, was fit with expensive splint over bottom teeth. Wore this from June through September of 2007. Dizziness and pressure, nausea etc. got slowly better. Up until a few weeks ago. Dizziness and pressure came back, nausea, noise sensitivity and visual sensitivity back. Headaches and Migraines, especially the ocular migraines where flashing black and white zigzagging lights are in the center of my eyes for about 1/2 hour or so. At my job I stare at a computer screen for 8 hours (12 in December) and type text that I see. As you can imagine, this is affecting my job.

Brain fog and fatigue are common as well. Especially after Tullio. Yesterday, I had a bad episode where I very forcefully and loudly cleared my throat. The pressure and Tullio were horrendous. I happened to be driving home at the time and couldn't focus for a few minutes. Thankfully, no one else was on the road, as I swerved. This is becoming more than just frustrating! But what's a person to do? I have no money or insurance to see a doctor.

But at least it's comforting to know that others are experiencing something similar, even if I don't have SSCDS. I thought I was going crazy, as whenever I describe what happens to me, everyone thinks it is all in my head! I was starting to think so myself.

Where can I get more info on this syndrome?

Snert

Suzy H · Newbie Joined: 06 Jul 2008 Posts: 1

Hi

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.

Does anyone here have Superior Canal Dehiscence Syndrome

LIFEFORM SOCIAL COMMUNITY NETWORK