Today is exactly three weeks after Todd had surgery to fix a rare condition of the inner ear, superior canal dehiscence syndrome (SCDS). Typical symptoms are autophony (hearing your own voice in your head when you speak), vertigo, and balance problems.
I wrote this series to help people out there suffering from this condition who keep getting misdiagnosed or have been told to just live with it. I wrote it for the doctors who have never heard of it (that would be the vast majority of doctors).
Will you please help me spread the news and post a link to this page or share it on social media?
ABC News posted a story about superior canal dehiscence that provides a great introduction to the condition. Wikipedia has a short article, but you may be able to find better information at this Johns Hopkins search page (sorry, I had to change the link; the article is “Clinical Manifestations of Superior Semicircular Canal Dehiscense,” in the Laryngoscope). My first post about my husband’s surgery is here, and Todd’s blog is here.
SCDS Support is an online forum for people who have this condition.
Types of Surgery to Correct SCDS
There are several doctors around the country who treat this condition, and they use two different surgical approaches. The more classic method is to plug the openings to the superior semicircular canal. The second method involves patching, or “resurfacing,” the temporal bone where it has thinned over the canal.
The first method (plugging) destroys the balance functions of the semicircular canal. Though a healthy balance system has built-in redundancy for one missing superior semicircular canal, losing one may cause balance symptoms in those who do not already have them. At the very least, it requires retraining the balance system to compensate for the lost canal.
Todd chose the second method (resurfacing) because it leaves the superior semicircular canal intact. This method is not as widespread, and hasn’t been studied as thoroughly. But its popularity is spreading because it is (at least theoretically) less invasive, with fewer side effects.
Dr. Lloyd Minor of Johns Hopkins University in Baltimore, Maryland, is the one who first described the condition, according to Wikipedia. He uses the plugging method and has performed that surgery more than anyone else in the world. However, Todd told me in January 2010 that Dr. Minor has been promoted to department head and no longer performs the surgery; his partner, Dr. Carey, has taken his place.
Dr. Gerard Gianoli of the Ear and Balance Institute in Baton Rouge, Louisiana, uses the resurfacing technique. He has done that surgery about fifty times.
Thanks and a big kiss to Todd for helping me write this post.
{ 44 comments… read them below or add one }
I’m also working on a project to create a DVD that explains the symptoms, the underlying cause, and how they’re fixed, all in layman’s terms, so people who have some of these symptoms might have a better chance of figuring out what to do about it. Since writing about it on my own blog (http://toddbradley.com) I’ve already gotten a couple calls out of the blue from people who can’t figure out what’s wrong with their ears and so they did a web search and found my site.
You would probably be surprised how many people with this problem are mis-diagnosed. From talking to dozens of people who had super semi-circular canal dehiscence and then had it repaired, it’s a rare case where their ear doctor correctly diagnosed the problem on the first try. In most cases, people are diagnosed with one of a handful of other problems, then treated for those. That’s what happened to me, in fact!
And the man in that ABC story had it for 23 years. It “only” took you 13.
I believe your posts will draw attention from the various search engines for sure, Beth. I admit I had never heard of the problem before.
I’m glad to have spread the news to one person, Bernard! I hope to reach many more.
Hi, thank you for your video describing SCDS. It helped me to look for more about our son. I think my seven year old son may have it. He has a CT Scan scheduled and is being evaluated by his ENT in town and also Johns Hopkins. I believe my son has every symptom category and has haf it since birth. I first learned about SCDS on Grey’s Anatomy on May 13, 2010.
Hi, Pam, sorry I didn’t reply sooner. I haven’t been getting email notifications of comments on my blog. I hope things are going well for you and your son.
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I had surgery for my left superior canal dehiscense syndrome (SCDS) using the first method which is plugging the SCDS only two weeks ago. After the surgery I was suffered with severe diziness for few days that affects also my balance. As of now the diziness reduced to almost 90% especially when you’re lying on bed, my concern now is my balance I’m having a difficulty in walking and moving around as if I’m already a 90 year old considering I’m only 41 or a person who is drunk that could not walk straight. I don’t know for how long I’m going to suffer with this balance problem.
I tried to live a normal life after the surgery, I’ve already watched movie in a movie house 9 days after my surgery and I don’t know if this is safe to do for a person who undergo SCDS surgery because of the loud sound inside the movie house or should I stay at home just to rest and wait to fully recover. I was afraid the second time when I watched movie again after 2 days, this time right there after the movie, when I stood up immediately I could not control my balance and my legs started to shake reason why I almost fell. Any commnent or suggestions?
Hi, Jheo. Have you been doing physical therapy to retrain your balance system? I hope so. Assuming that’s the case, these are probably good questions to ask your therapist and/or surgeon. In my case, I didn’t see a movie for a month or two after the surgery, I think, though I was up and going on long walks within a week. But I think that’s unusual. I didn’t feel fully “right” for about 2 months after the surgery.
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Hi Todd. I’ll have my first check up tomorrow with my doctor, so far I don’t do any physical therapy only walking as per advise of my doctor during my confinement in the hospital. As of now I can’t drive and walk on long distance if I’ll do it by myself, I am totally dependent with my wife. I wish this balance problem will solve in a short time period. Thanks for your reply.
I am a 34 year old female and have been diagnosed with SCDS after 5 years of struggling with constant imbalance, feeling like the floors and walls are moving with me as I walk, having this drunken feeling constantly, etc. I have tried multiple medications over the years and have done physical therapy.I am scheduled for surgery in a little over a week. Does anyone have any issues I should know about after surgery?
AG, please go to http://scdssupport.org (SCDS Support) and look in the forum. There you will find many accounts of surgery, including my husband’s, Todd Bradley. If you can’t find his story there, you can email me at beth@bethpartin.com. Good luck with the surgery.
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Thank you for this story. I am scheduled to have surgery in November 2010. Fortunately for me, my ENT knew right away what I had. Took a CT scan and confirmed the SCDS. Having it done at Mass Eye and Ear in Boston. Bit concerned about the pain afterward and almost fell off my chair (not as a result of my dizziness) when I heard a spinal tap was necessary.
Again, thanks so much in giving me the real story of recovery.
Larry, thanks for stopping by. By sure to check out scdssupport.org for more stories.
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I had the surgery for SCD in 2007 and Iam having reaccuring problems, is that normal does the surgery not work?
Debora, I think it depends on who did the surgery and what technique he used. The surgeon I used only had one patient EVER who had a recurrence of symptoms, out of 60 or so patients fixed.
Hey Todd and Beth;
Love that you’re doing this! I also had surgery at MEEI in July and I felt more dizzy at first, but it was because he actually FOUND the hole and fixed it; my body just need to adjust to life WITHOUT the hole again, as it had been there for a long time and my body had been trying to adjust to it being there..
Hang in there folks who are having surgery soon, or have already had it! Kudos again, Beth and Todd!
hi i found a website about you sharing your husbands experience with the superior canal problem im 20yrs old and when i was pregnant with my second child i was four months pregnant i came home from college and i got on the computer and all of a suden i got super dizzy and lightheaded its been a year since it start last year in november since then im constantly tired and feel like i have some brian fog going on im constanly lightheaded and feel off balance when i walk my vision also feels weird and i have alot of ringing in my ears and pressure my ear doctor did a CT and it came back that i have a hole in each temporal bone and im set for surgery in january to repair just one side to see if it works and if it dosent i have to get the other side repaired…my question to you is did your husband feel constantly lightheaded or dizzy or pretty much have any of the symptoms im having…this past year has been hell its controlling my life and i havent been able to do anythang and im hoping the surgery im having will fix my problems….if you can send me a message back and let me know thanks so much!
Nicole, thanks for writing. Todd didn’t have too much dizzyness or lightneadedness. His symptoms were mostly autophony and a few other things. You can find his story at http://www.toddbradley.com (you’ll have to search for SCDS). Sorry you’ve had such problems—I hope the surgery fixes it. Please be patient after surgery, as it does take at least a few weeks for the effects to be felt; the inner ear has to heal.
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I had a craniotomy in September of 2010 to plug the dehiscence in my left ear. I had some side affects that have gradually gone away…the one consistant thing that continues to bother me is constant itching in my repaired ear….anyone else have this problem? It took me almost 3 years for diagnoses and about 5 doctors. My surgery was preformed my Dr. John Dornhoffer in Little Rock, AR at UAMS…he is BRILLIANT!!!
Heather, I never suffered from any bad itching inside the ear. The surgery wound was a little itchy after the staples came out, but no big deal. Are you a member of SCDSsupport.org? That would be the place to go to ask if anyone else has itching problems.
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HI
I was bilateral. I had my first canal pluggging and resurfacing at the House Ear Clinic three years ago. It took about three months to feel wonderful. I was driving at about two months post-op. Autophoney, ear fullness, balance all resovled.
I had my second side done three months ago at the House Ear Clinic. Same procedure,different doctor. I still cannot walk a straight line, nor drive. I still have a little ear fullness.
I am wondering if anyone else who is bilateral could offer up their experience, strength and hope. I’m a big discouraged at this point. I am wondering that because both ear canals have been plugged if my balance is as good as it is going to get. I am going to physical therapy. I’m scarred right now. My doctor says all surgeries and recoveries are different. I’m a 53 year old female in otherwise excellent health and condition. Thanks
Alexis
alexis im bilateral and i was resurfaced on the 11th of jan im still dizzy and feeling off balance at times i still have ear fullness like feeling its plugged and when i swallow it crackles im going on 5 weeks post op and they say its to be expected i have a good forum you should sign up at and you can ask everythang you need to know the people are wonderful http://scdssupport.org/
I have been suffering with bi-lateral scds for a year and a half. I was diagnosed at the Mayo Clinic in Jacksonville, Fl. The doctor is Dr. Larry Lundy and he uses the transmastoid procedure vs. the craniotomy done by Dr. Minor at Johns Hopkins. It seems that all of these Dr.s have done relatively few procedures to be confident in. The quality of my life is deteriorating, and I feel the only relief will come with surgery. I’d like your feed back to help me make a decision in such a serious matter. Also, can you tell me where I can find statistics on success and failure rate?
B.K., I don’t know where you can find statistics. Gerard Gianoli, the doctor who did Todd’s surgery, has done quite a few procedures.
I suggest you try the website scdssupport.org. There are lots of people there who could give you advice.
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Has anyone with SCDS had migraines headaches . I am to have surgery in two weeks. I am totally bedfast from the dizzyness, and balance problems. I am praying that the bad headaches will go away.
daniel, YES scds causes migranes and headaches its very common! good luck with surgery!
I am a 38 year old male. I have beeen down for over a year now. Going to doctors after doctors, finally my mom suggested to the doctor if I could have SCDS. Her sister, which is my aunt had it and had to have surgery about 5 years ago. After going to all these doctors and my mom pointed it out to them if maybe I had this also. There it was on the ct scan. I can not get rid of my migranes. I hurt all the time. I was told by my doctor he thinks I will still have the migranes. Thank you so much Nicole as I am so scared to have this surgery done. God Bless
No problem alot of people with migranes that have surgery takes the migranes away im 21 and have 2 children a 1yr old and a 3yr old and ive been this way for 2 years severe dizziness and i had surgery in january and it failed im trying to see dr.ginaoli in baton rouge for a revision
dan i forgot to inform you some people with scds will have high intercranial pressure and also perilymph fistuals..have you talked to your ear doctor about this they can check your pressure with a lumbar puncture..we are sure i have both as well plus my eye pressure is high and ive had testing to rule out other problems like glaucoma
Hello, I had surgery 2 days ago for SCDS at the Karolinska University Hospital here in Sweden. I have suffered for almost 6 years. Got the correct diagnoses after 3 years. Every symptom matches the SCDS. I am grateful that I was brave enough to go through the operation at last. I was nervous before, but must say that it already feels better. I don’t hear all the noices from my body/voice anymore. Yet, it’s too early to see how well it worked, especially regarding the hearing. I may have gotten a hearingloss now in that ear, but by all means, it’s worth it. I got a training program for the vertigo that I already have started to do. Åse
Does anyone know of a failed SCDS plugging. Has anyone had it redone? Is it even recommended to redo it if symptoms return?
Thank you for your input.
Cristina, I’d recommend you ask that question on the SCDSsupport.org forums. You’re much more likely to get a good answer there. I haven’t heard of a failed plugging, because I don’t know how such a thing could “fail”. As I understand it, once the semicircular canal is plugged up, it’s destroyed and can never be used for balance signals again. It’s sort of like asking whether amputating an arm can fail. I have heard of people who have needed a revision to their surgery when they’ve had the resurfacing type of procedure, but those were only ones who had it done in the early days.
Todd, thank you so much for your answer, it makes sense, and I sure will check the scdssuport.com forums. My plugging gave excellent results for a year but then symptoms returned, only they involve the other ear as well. I’m trying to remain optimistic while I wait for my next visit with the otologist, but as you know, this can drive you to depression easily.
Thanks again.
Have been diagnosed with Scds after a six year battle and many midiagnosis everything frome stroke to mental health problems. Has anyone else had problems with vibration sensitivity? Its horrible. Just finished the testing praying Dr will do the surgery. Without at least some resolution of symptoms I will be forced into medical retirement at 45.
James, I would post that question on SCDS Support. See the link toward the beginning of the article. People on that forum will be able to tell you if that symptom is common.
HELLO,I HAD SURGERY FOR SUPERIOR CANAL DEHISCENCE SYNDROME A YEAR AND A HALF AGO;UP UNTIL TODAY I AM STILL SUFFERING HORRIBLE DIZZINESS,VERTIGO,DISIQUILIBRIUM,OFF BALACE,EAR FULLNESS,HEADACHES AND VIBRATING SYMPTOMS IT IS SO DISABLING,EXTREMELY DEPRESSING AND ALWAYS ANXIOUS ABOUT MY UNKNOWN FUTURE HAVE HAD AN MRI AND WAITING TO HAVE ANOTHER CT SCAN IT IS UNBEARABLE,I SUFFER SO MUCH WITH THESE DIBILITATING SYMPTOMS IT HAS TAKEN MY LIFE;I THOUGHT I WOULD FEEL BETTER AFTER THE SURGERY HOWEVER THE DIZZYNESS AND VERTIGO SYMPTOMS ARE THE WORST,I AM IN A DESPERATE SITUATION PLEASE HELP!!!!!!!!THANKS
Jessica, I’m sorry things are going so poorly after your surgery. Have you checked out SCDS Support, linked to above?
Hi! I had surgery on my left ear at the Mayo Clinic in Nov 2009. My symptoms were only ear fullness and a grinding sound heard when I turned my head. That was it! I did not have dizziness or balance issues or even headaches.
They perfomed invasive surgery where they had to cut behind my ear and patch
the hole using cartilage from my outer ear. Today, I regret having the surgery.
I am worse off than before. I am suffering with constant ear ringing and ear fullness (still a symptom) as well as numbness. I was assured the numbness would go away in 3-6 months. It has been a year and a half. I don’t know what to do…….the numbness, fullness and ear ringing are driving me crazy…ARGH!
I wish I never had the surgery, the symptoms were much more tolerable. The ENT I use now told me that if I had been a patient of his at that time, he never would have recommended the surgery because it can make the situation worse.
Any thought on this?
Thank you~
Hello all! My husband has been sick with the symptoms from this for 7 LONG years. We recently went to an ENT doctor and they disovered a hole in the Superior semi circular canal. They say he needs this surgery to get better. We only live about 90 mins from Johns Hopkins hospital. Has anyone used a surgeon there for this procedure. They (the ENT drs) say my husbands surgery will invole removing part of the skull, and moving his brain to the side… to get to the hole in his canal because of where it is located. We need to see a specialist yet to say exactly what can/may happen in this surgery. Do you all feel it’s worth doing for him to regain his life as a dad and a husband, or are the risks far greater and he should live with the symptoms and enjoy the good moments that are getting far adn few in between? WE are scared and not sure what decision is right yet glad to have a diagnosis for him finally! Your opinions would be greatly appreciated by us who have not gone through with it yet. Thanks:)
Melissa,
The surgery was definitely worth it for my husband, and his symptoms weren’t as bad as many people’s. But it IS important to realize that surgeons use different methods to fix this problem. The doctor at Johns Hopkins who originally did this surgery, Lloyd Minor, used a “plugging” technique that basically destroys the semicircular canal. It should get rid of the symptoms, and your husband does have another semicircular canal in his other ear to compensate for the loss of the first canal. However, if your husband has problems in both ears, then resurfacing would be a better technique.
My husband was in the hospital two days for this procedure. Yes, they do have to open up the skull and they did shave off a piece of bone from the side of his skull to patch the hole over his semicircular canal. But it’s not brain surgery; it’s surgery near the brain.
I suggest you check out scdssupport.org and read some of the stories there. And I would definitely get a second opinion. If you can get advice from doctors who use different techniques, that would be best.
Beth
I ‘ve had few syptoms I think all my life,few came in later and the last -night time cricket,ringing/buzzing started 6 months or so ago. I sang in the choir,love the music. When I use to sing I could double hear myself,it’s almoust like an eco…When I talk I can hear myself,that is maybe why I talk quite,because of the eco beeing loud…I lived with it…learned to ignore it. I can’t remember when I started to hear crackles when i swallow,food chewing …some days are louder then the others.I learned to ignore it. The foot steps !! I so wanted hardwood floor in my house,got it instaled just to learn that walking on it pound my right ear,sometimes I have to put some preshure on it just to go upstairs. Eating out- sound of forks ,spoons hitting plates drives me crazy. The car ride,certain notes,sounds in the music! Kids bouncing the ball pounds my right ear drums out
.also you feel like that ear is full or covered.
In the last few years I went to different doctors.The answer was I am healty.Well, I never thought it could be my ear,since I had no infections. Few days ago went to ENT. They did hearing test.I can hear very well. Yesterday I saw a doctor,who did a tuning fork test. Anywhere he touched me with it I could hear it in my ears,or head. That is why he is sending me for CT on friday.He thinks it is SCDS. I am not happy ! I just wanted some magic oil to fix it. My question is -since I am getting newer symptoms,does that mean it’ll get worse?Does this lead to hearing loss or balance loss ?
Danguole, it does sound like your symptoms are getting worse. If it is SCDS, the only solution I know of is surgery. Please look at the SCDS Support website. You’ll find lots of information there.
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I was diagnosed with SSCD in Jan 2011, following 7 years of misdiagnoses. I am 36. I had canal plugging done in March on my left ear, the incision behind the ear and extending the entire length of the ear. I, due to finances, forced a rapid recovery, leaving the hospital the following day and returning to work in a plastic fabrication shop 2 and a half weeks following; however, I was doing very well. Roughly 1 month after surgery, my motorcycle backfired twice in my closed-in carport. A few days later I noticed symptoms of SSCD, only on my right ear this time. Surgery was scheduled to correct my other (right) ear; however, 2 weeks ago my left ear plugging dislodged, and the symptoms are far more severe than prior to surgery. He will attempt to correct my left ear next week, with an expectation that I will lose all hearing in that ear (a better alternative to the symptoms). The new incision is anticipated to be above and slightly in front of my ear this time, and I was also warned about a possible stay in ICU. I have a feeling I won’t be leaving the following morning this time. Good luck to all with this highly unusual condition. I will check the SCDSsupport.org forum.
Dianne, considering that your earlier plugging dislodged, do you think you should look into getting a new surgeon? Or perhaps you should consider a different method, such as resurfacing?
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