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.
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!
is it loud in here? want to extend a profound and ever grateful thank you. my whole, whole life I have always believed there was something really really wrong with me. You see I am mostly deaf, but it is really really really loud in my head. it creates a distance between me and the world. it scares me frankly. for a gregarious girl like me, it is a lonely catacomb. In 2004, the vertigo began, with it vomiting, for one year, I puked and spun, even lying prone in the bed, down to 70lbs and desperate, I was sent to House Ear Clinic, to an angel named Dr Brackman. only yesterday, reading your blogs, did i learn that thing has a name: Superior Canal Dehiscence Syndrome, Wow.
I never once considered that other people’s heads didn’t have all this noise inside it. i thought sound hurt so terribly because of conductive hearing loss, bouts of cholesteatoma, Mastoidectomies, on and on….
When I went to Dr Brackman it was because spinning and vomiting was literally killing me. He saved my life with the surgery. In fact, the whole thing was so traumatic that yesterday was the first day i spoke of it, and looked up dr brackman, somewhere along the rabbit hole, i found a few blogs. Keep up the good work getting this out. it is utterly horrifying, incredibly challenging, profoundly exhausting. it is like being a plugged in toaster and getting tossed into the tub.
And no one, it seems understands. Hats off!! Hooray and Thank you.
How much does the surgery cost?
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.
You did Thank you. I have it in both ears.
Hi, Jennifer, have you been able to find a doctor?
Beth
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.
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.
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.
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.
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.
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.
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.
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~
Which Mayo?
I know where your coming from I had two tm’s in the past two years,the noise stopped in my head,but I have the ringing and my head feels full,noise still others me,every day is pure H_ _! Its exhausting. ent said it has nothing to do with my surgery? Take care everybody ”Chuck”
Hi, Charles, I’m sorry that the surgery has made things worse. Would you doctor be open to letting you talk to other patients of his? Or perhaps you could find a support group, such as SCDS Support?
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.
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?
I was so happy to find your blog today. I’ve had vertigo issues for almost 20 yrs, was diagnosed & treated for Menieres and positional vertigo and I did well for a long time. About 8yrs ago my symptoms got worse, the pressure, echos, headaches, balance, sensitivity to sound & vibration. My inner ear feels like it is vibrating. I feel like I am in another demention, spacey. My ent ordered a ct and it showed SCDS much to his surprise since it was so unusual. It was manageable until last year, and I just can’t get any relief. I flew last April and it seems that aggravated it. I take Meclizine for my balance and Xanax which really helps calm down the feeling of vibrating in my ear. But I can’t cope any longer. I am now in the process of finding a Dr in Philadelphia PA who can help me. My ENT says the surgery is a difficult ordeal, so that has me worried. I am now 60 and widowed, so living alone is very hard. I am much worse in the am usually by lunch I am a little better. Thanks so much for all the information. I don’t feel so strange with my complaints now.
Kathy,
I’m sorry you’ve been having so many problems with your ears. My husband had a pretty easy time with the surgery, but I think it varies from person to person. Please don’t assume you’ll be debilitated by it, but you should have someone to watch you for at least a week while your sense of balance returns. And you may not be able to drive for several weeks.
SCDS has been described in medical literature for only about 15 years, and most doctors don’t know much about it. Please make sure the surgeon explains the difference between “plugging” (not sure if that’s the official term, but it refers to a procedure done on the inner ear itself) and “resurfacing” (the surgery Todd has, which involves patching the temporal bone above the inner ear).
I strongly suggest getting a second opinion on surgery. I also suggest contacting Dr. Gerard Gianoli at the Ear and Balance Institute in Baton Rouge, even if you can’t afford to fly there for an exam. He may have recommendations for doctors in your area. Also, you might try looking for surgeons in New York or Baltimore, where Dr. Lloyd Minor, who developed the plugging procedure, practiced medicine at Johns Hopkins.
Hi Group,
I’m headed into SCDS surgery and possible perilymph fistula tomorrow (March 26th at noon) . Just found and hank you for the blog – I’m more reassured. Doctor is doing a plug. I feel lucky in that i have only had the problem for about 10 months with a 3 week long bout of vertigo 2 yrs ago. I haven’t had a imbalance problem – just the sound amplication where difficult to handle own voice, turning of newspaper and magazine pages, showers(drop to loud) swallowing, typing on a keyboard, extend periods in a auto leaves you tired and wanting to be recluse. My option was get a cabin in the woods or desert and never hear myself talk again or surgery – opted for the later. Will report again as I progress.
Smiles for your day!
:)C
Clair, good luck! Let us know how things go after the surgery.
On arriving at the hospital, the physician after carefully reviewing all the many tests and CT scan decided to be conservative and only do the inner ear fistula repairs to see if that decreased the sound problems. I appreciated that, but also realize it may not alleivate my problem. Hopefully that cures or at least reduce the noise problem to acceptable level. I do have clearer hearing although still reduced as before. Tinnitus is stll there although maybe a bit reduced. Sound amplidation does seems less, but still lots of debris still to flush out of the canal so no decison on that yet. Dr. says no strenous activity for at last 3 weeks. Can’t stand completely upright for long at this time. Just have to have the discpline not to push myself like I usually do. Get lot of reading and rest. Thankful and fortunate for lot of sick time I have acculumated over the yrs. So helpful to read of other experiences – thank you
I just came across your blog today, and I am glad I did. The symptoms started about three years ago out of no where. I had my first SCDS surgery about 2 months ago. During surgery the doctor found that the entire bottom part of my temporal bone was missing, exposing my brain, and had to do a bone graph and use lots of cement to close it and keep the cerebrospinal fluid from leaking. Post surgery everything was wonderful except all the cement the doctor used was pulling my incision too tight and it opened back up, exposing the cement. I was having a lot of clear drainage from the incision site but the doctor just called it “tissue fluid” and chalked it up to the healing process. I went into another surgery six weeks later to shave down the cement and re-close the incision. They put a drain in after surgery this time, and during my post-op appointment my drain was taken out. Last week it was evident that the hole was not going to close so I had him put some additional sutures in during my appointment. It has been a little over a week now and the fluid that was leaking from the hole in my head now seems to be clogging up my ear completely. When I looked at it the other night I noticed that the the hole has reappeared! I haven’t been able to get it wet for over 2 months now… I just can’t seem to get this thing to heal! Any ideas or suggestions? It’s driving me mad.
Summer, I’m sorry your wound has been giving you so many problems. At this point I think it’s time to go see another doctor. Someone who knows about SCDS would be best, since it sounds like the bone graft is still producing some kind of fluid. Perhaps you could get someone to give you a consultation over the phone, after you sent them pictures and such. I suggest checking with Dr. Gerard Gianoli at the Ear and Balance Institute or with the doctor who took over Lloyd Minor’s practice at Johns Hopkins. Minor was the doctor who devised the first surgery for SCDS, but he no longer practices. I can’t remember the name of the doctor who replaced him.
Clair, please do take it easy! And let us know what happens.
Hello,
My name is Cyndi I am from Fort Worth, TX. I had the surgery for SCDS 10 months ago. I have had several issues. I can no longer hear my eyes moving or blinking and loud noises like whistles aren’t as bothersome. I am experiencing dizziness, sensitivity to light. I can barely drive at night with out being a complete nervous wreck. The head lights hurt my eyes they seem brighter than the sun. I have also experience vision issues. I have 20/25 vision but can hardly see anything. I am constantly dizzy. I have been back and forth to my doctor he has tried every thing I have had a very detailed eye exam. I have had another CT scan and we are trying the Epley maneuver which means the cystal in my inner ear have become dislodged. I am so frustrated and so is my doctor. I am thinking of going to Baltimore to seek a second opinion and hope that i can see Dr. Minor or a close colleague. Has anyone else had symtoms like these after the surgery.
Cyndi,
I’m sorry you’re having so many problems after surgery. I don’t think Dr. Minor is practicing anymore, but I’m sure one of his colleagues could help. Or you could try Dr. Gianoli at the Ear and Balance Institute in Covington, LA, which is a little closer to you. I remember talking to him about a similar procedure (not for me, just in general). And I know he did all sorts of tests on Todd before his 2009 surgery. I hope you find some relief!
I have been diagnosed with scd – in 2008, and it’s steadily getting worse. I’ve been thinking about having the surgery but not sure it will be covered by Medicare. I also don’t want to experience any further post op problems. Help.?
Joel, I’m sorry your symptoms have been getting worse. I have no idea about Medicare, and I don’t think anyone can guarantee that you won’t have problems in the future. That is a subject best discussed with a surgeon, however.
I had this surgery where I live in st. Louis,,mo with Dr. Joel Goebel who worked and taught side by side with Dr. Lloyd Minor. My surgery was in 2003 and while it did take me several months to fully recover it also saved my life in the sense that I was a prisoner in my own home with so much vertigo. It has been repaired and I would definitely advise you to call him. He is wonderful.314-362-7509 I wish you and anyone struggling with this much luck. It can be cured. Take care
I have had all the symtoms and plus a few more for over 15 years and have seen many doctors in my area. No one was able to give me an answer.
Is there a Doctor near Cincinnati Ohio that does this operation?
Francis, please go to scds.org and ask that question there.
I am having surgery for scd Oct. 12th at Johns Hopkins by Dr. Cary( studied underDr. Minor) My life is worth nothing like I am now. Scared, lonely, afraid to go out of house. I am so tired of hearing my voice, heartbeat, chewing. I am do afraid operation won’t work .
My sister has suffered for over 4years with scds. She had her operation over 7 weeks ago and is still suffering intensely with vertigo. She is having physio to help retrain the brain using her eyes. She’s very depressed and was hoping for a better outcome. Is she expecting too much after only 7 weeks. She was told that she also suffers Mal De Barquement Syndrome. Which was diagnoised 4 years ago it is only recently that she was told of the SCDS. She can no longer drive and has lost her independence. If you have any suggestions would be happy to hear from you.
Jenny, I am sorry your sister is having so many problems. Perhaps someone on scds.org could help her deal with some of her symptoms?
Dear Patty and Jenny,
I had scd surgery a little over two years ago and I felt exactly the same way you do (Patty) as I was going into it. “It just was not possible to go on like that”. Be patient, though. It takes time to recover. It took me a good few weeks to get over the worse part (altered vision, dizziness, vertigo, pressure, etc.) and after two years, I cannot really say I am at 100%. I don’t think I will ever be. Remember, it is not your normal canal or own bone anymore. Nevertheless my terrible symptoms went away, I don’t hear my eyes or any internal noises anymore, I can talk without knocking myself out, I can even tolerate loud noises. I can say what helped me the most was the therapy. That was the key for me and what I would advise anyone to do with a good therapist (we have an outstanding one in San Antonio). It is essential, even now. I still follow some of my therapy routine while I go out for a walk. The vertigo problem resolved for me with repositioning maneuvers for the “benign paroxysmal positional vertigo”. Ask your therapist if you cannot get over it. Best to you.
I am sooo interested in this site.I’ve had my symptoms for over 3 years after a concussion. I found SCD myself on line – my doctors had no idea what was wrong with me!!!! My Dr and my Ear Nose & Throat specialist agreed with what I’d found and I’m now waiting for an appointment to hear what happens next. I would love to hear if there’s anyone from New Zealand who’s had this surgery. I really don’t wont to be a surgeon’s ‘guinea pig’. I can’t live with all this for the rest of my life but I don’t want to come out of surgery worse!!!
Cristina, thank you for explaining how long recovery takes—it’s always good to hear from someone who’s experience. Compared to some people we know, Todd’s recovery was fairly easy. Jenny, I think that doctors are becoming more aware of this problem now, so you need not be someone’s guinea pig. But definitely pin the surgeon down on how many operations of this type she has done.
Diagnosed with SSCD May, 2012. No one can understand how life changing it is unless you are experiencing it. Thanks so much for the info. Not sure what to do now. Had to leave my Nursing job, etc. Many thanks for the info.
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I just had the surgery for repair of scd one week ago.. My hearing is muffled, my vertigo is worse. I am very depressed. I also was diagnossed withs mdds with the scd. I havent worked as a nurse since may. Very scarey to me this may be the way my life will continue. Do not want anymore surgery. Also have 3 ruptured lumbar discs that adds to the vertigo.
Please give yourself time to heal and try not to worry too much. Todd had a very easy recovery, but it still took weeks until he could do things like drive or go back to work.
Joann, I hope you are able to find help for your SCDS. Try checking in with SCDS.org and see if anyone there has ideas.
Hi Elizabeth,
I had my Superior canal plugged in August of this year and I was previously diagnosed with Mal d’ debarquement Syndrome some 4 years back. Since my op I have been suffering with intense vertigo, like you I am really struggling with my symptons, loss and muffled hearing, pressure or what I describe as a pulsing heavyness in my brain besides the vertigo of just turning my head. It is very depressing. Some days are very bad and on occasions I have a day when things seem a little better, mostly when I am physically very busy. I try to walk every morning around the block to help clear my head and to keep the nausea at bay, this helps sometime. My specialist tells me they are unsure how long it will take before I am back to normal because of the mdds possibly 3 to 6 mths. I’m trying to keep my exercises going and trying to be positive. Keep your chin up and would love to hear from you.
cheers Noelene
I had SCSD surgery at the beginning of Aug. My balance is not improved and sometimes seems worse than before. My hearing has tested worse than before surgery. I have the feeling of eustachian tube fullness of varying degrees. But the worse complication has been accessory nerve damage from having my head turned so drastically to the side for 4 hours. This nerve innervates the trapezius muscle in my shoulder which is only partly working, causing me to have restricted movement in my arm and almost constant pain in my shoulder and neck from other smaller muscles trying to do the work of moving my arm and shoulder. Have you heard from anyone else with this same condition?
Mary,
Your post-op symptoms describe mine to a T. Everything improved over time except I did have some permanent hearing loss and I still get the fullness from time to time. You had the surgery a while ago though, have they let up any and have you talked to your doctor?
Today, October 23, 2012, I was diagnosed with SSCD after testing and a CT scan. My doctor in Holland, Mich., wants me to go see a specialist at the Michigan Ear Institute and consider surgery. After reading the reports on your website I am reluctant to follow up with this, I am a 74 year old male and I am managing but have all the symptoms, but the unsteadiness is the biggest problem. Also bothered with loud noise and bright lights. Your website was helpful.
Mary, I would think that physical therapy would help with the trapezius problem. I had trapezius strain for several years, so I know how frustrating it can be.
Phil, I would definitely go see a specialist, and be sure to ask what kind of surgery will be done—plugging or resurfacing. You might want to check with one specialist who does plugging and one who does resurfacing. I would also ask the doctor if your age might affect recovery time. I’m glad the website was helpful.
I am so glad I found this site. I was diagnosed back in late February with SCDS after finally doing a CT. It started last December when everything went crazy and by balance function seemed non existent! At times I could not even walk from one room to the other without tripping. A couple of months earlier I did notice severe bouts of vertigo that would come on and leave but in December it just went into constant disequilibrium. I was referred to a specialist who is a ear neurologist and devotes his practice to hearing and balance disorders. Dr. Jaques Herzog in St. Louis, MO He truly is an expert in his field. But it did take til Feb for him to test for it. Just thought is was BPPV and did exercises which just made things worse. I did not have any of the hearing sounds just complete disequilibrium, but after surgery I started hearing my eyes move and my heatbeat in my ear and my voice echoing. It took at least 4 weeks for blood to dry up from surgery but found those things getting worse and dizziness back. He put me through 12+ weeks of balance therapy-did not work much. My doctor felt that I was one of the lucky ones(of course sarcasm) that the resurfacing had failed. Went back in Sept 19th of this year. I am at 7 weeks out now. He chose not to do the plugging as he felt that would make pressure to hard for me to recover from, so he resurfaced again really going over it well. My sounds are gone so I know the patch is holding and recovery was much easier than the first. Felt very hopeful at first but now I am somewhat losing hope as I still have the horrible feel of disequilibrium when I go out to big places and at times when I turn my head in different positions. I came to this site to see what others experience and to see if I am giving up too soon. This is so life altering. The doc is great but does not have the best communication skills at times and just says it could take a while. Any thoughts?
Lisa,
I know that it takes weeks to recover from one surgery, so I am sure it takes longer to recover from the second surgery. I’m sorry you’re still having problems. Have you checked in with people on SCDS.org?
Beth-Can you please be more specific on that website address? Tried to put in SCDS.org and get a school. Thanks
Beth-Are you meaning SCDSsupport.org listed above? Thanks
Yes, I did mean SCDSsupport.org. Sorry for the mistake.
I was diagnosed with bilateral sccd almost 2 yrs ago. I opted for plugging surgery on my left ear in May and since then my symptoms have gotten much worse. I suffered with autophony and some balance problems before the surgery, but was told that the problem would certainly worsen. I thought I would get ahead of it by having the first ear done and then seeing when I would do the second. Since the surgery, I am not able to walk without stumbling, my vision is terribly affected and I am terribly distraught and depressed. I am anxious about going out alone for fear of falling. I feel like I have aged 30 years. Vestibular rehab therapy made things worse. Now there is a finding that I have no function in my left lateral canal. The doctors say the symptoms don’t make sense. I am seeing a neuro optometrist to rule out a convergence disorder next month. Has anyone else been through this? I need to get my life back.
Cathy, please post this comment on SCDSsupport.org. Someone there may be able to help you.
Also a great page on FB for us. What I have been seeing over these past five years (I’m bi-lateral, plugged last time two years ago) is that recovery is different, symptoms can vary. These condition is so new that I don’t know that there are blanket answers to anything. I know I was 100% better after the 1st sugergy, even with symptoms caused by my second ear. I recovered in about six months.
My second surgery, of course, left my balance canals completely disabled. It has taken two years to get back to 85%, which, is what I bet I will have to live with.
I developed tinnitus, as well. However, that may have nothing to do with surgery. I think this is a mental thing, as well. They symptoms cause anxiety and depression. We have to fight that and replace it with acceptance.
I found once I accepted, did my best to resolve it (surgeries) and got on with my life the better I felt. Things can always be worse.
My heart goes out to all of us. But at the same time, we are blessed, we live in an age where good doctors are working hard to heal and help.
Keep fighting the good fight and God bless us all.
Alexis, what is the Facebook page? I searched for SCDS but couldn’t find anything.
Thank you to everyone participating and offering their support and encouragement. I too just received SSCD surgery on Tuesday and am frustrated with the recovery process. It’s nice to see that Im not alone and there’s hope. It’s also a bit scary to read about some of the unfortunate recovery stories and my sympathies go out to you all. The lack of hearing, constant ringing, fullness, pressure, and vertigo are extremely frustrating during recovery and I hope they diminish soon. Unfortunately my surgeon wasn’t able to provide much detail about recovery, but he did tell me the surgery went as well as can be expected. I opted to the plug method. Good luck to all my fellow SSCD brother’s and sisters.
Steve,
I do think the ear will adjust over time—some of the functions of the plugged ear may need to be taken over by the other ear. I certainly hope your symptoms improve, and I hope you find some people to talk to on SDCDsupport.org.
I truly appreciate this post. I’ve been looking all over for this! Thank goodness I found it on Bing. You have made my day!
Therapy is extremely important to get your brain to pick up the functions of the missing canal after plugging. Talk to you otologist about a good therapist on this field. It makes a big difference! Best to you.
Calahan, I’m so glad to be of help. Best of luck to you.
Cristina, your advice is good.
Hi everyone – I was diagnosed with this today and have been suffering with the symptoms for a couple of years now. It finally got to the point of me not being able to function in normal day to day functions. I have been referred to a specialist for surgery and the two surgeries I found are somewhat frightening to me. I was wondering, with either one of these, is there a hospital stay involved or is one of them an outpatient type of situation? Thanks everyone.
Thanks
HI Aimee,
My sister Noelene first had symptoms of SCDS after arriving back home in Australia from Japan 2008. She struggled to get through each day and eventually had to leave her job. I have to say that last year she had her superior canal completely sealed (plugged with bone etc). She was very sick immediately after the operation but with medication was able to contend with things. It has been a very long road to travel BUT she is very much improved. She no longer needs the aid of a walking stick as her dizziness is much improved. She is back driving her car and managing her life. She lives independently although not completely back to normal. It’s a long road, but there is light at the end of the tunnel. She has had specialist physiotherapy treatment b4 and after surgery. It has been a hard thing to watch someone close to you go through but I would say hang in there, do your research and make your own mind up as to what you decide to do. I can only say that although Noelene is not completely symptom free those symptoms are much improved. Sure, there are good days and some not so good days but all in all I feel that she is so much better. It has been a huge strain on myself and my elderly Mum to watch Noelene go through this as we are her only support. So now that she can fend for herself our lives are much improved also. I wish you much luck and love and hope that you will also find some much needed relief. God bless and stay strong.
Jenny
I believe they are both outpatient surgeries. Mine definitely was, even after staying in surgery for almost 8 hours the third time. However, you will DEFINITELY need someone to take you home and take care of you for about the first week. Your balance will most likely be off due to the change in the semicircular canals governing equilibrium. Recovery varies from person to person. I didn’t feel comfortable driving for about a month. Some can manage it in less time, some more. Although recovery is a long road, as Jenny said above, I believe it was worth it for me. My symptoms have improved ten fold. I did permanently lose a little hearing, but it was a worthwhile trade off to get out of my own head and stop getting the dizzy spells. I hope it all goes well for you. Keep us updated. Also, please consider joining the SCDS community forum at http://www.scdssupport.org
Todd’s surgery required two days in the hospital, one in ICU and one in the surgery unit. I think Dr. Gianoli now does one kind of procedure as outpatient surgery, though I don’t like that idea.
I recently fell and had a concussion. I found out I fractured my skull and also have a tear in the superior semicircular canal. I can’t work due to the horrible dizziness, sick to my stomach, headache, room spinning. I was diagnosed with this and also crystals in my ear. Dr hoped the Epley maneuver would work, but no luck. Go back to Dr tomorrow, afraid to hear what he has to say. Any advice, thoughts. I would be so grateful to chat with someone going thru this. Best wishes 🙂
Amy, go check out SCDSsupport.org. It’s the world’s biggest support network of SCDS patients. There’s where I learned most of what I know about the disease.
My husband has been living with SCD for over 3 years, he finally had surgery (plugging of the canal) end of July. His symptoms before surgery were autophony, could not be in loud places, certain light would make him nauseous (neon lights) hearing his eyes move in his ear. After surgery his balance got significantly better within a week. Fullness in his ear is better but still there, he does not hear his eyes move anymore but as of 3 days ago he started to hear his heartbeat. A symptom he never had before.It is so random and weird. Now he has to have our sons noise maker on in order to fall asleep, as well as music in his ears to be able to study. He has started medical school and fears that hearing his own heart beat may interfere with listening to patients hearts. Did anyone else experience new symptoms after surgery that resolved themselves?
I didn’t hear my heart, but I developed tinnitus three weeks after the operation. Loud at first, needed nature sounds to fall asleep, but eventually its volume decreased and I learned to control it with sleeping position. Four years have passed and I only hear it if I sleep on the affected side, which I avoid. Your husband’s operation is very recent and things must still be readjusting. I think time and patience make a big difference with post-surgery issues. Good luck.
Thanks for you quick answer. You are right his surgery is very recent, and he has been doing progressively better until this new symptom came on. We were a little worried that it started 5 weeks after surgery but we are still hopeful it will resolve itself. Thanks for sharing your experience, it’s given us hope 🙂
I have surgery at the Mayo Clinic in late 2009. My only symptom was ear fullness.
Not only did the surgery did not correct the fullness sensation in my ear, I developed tinnitus about one year later as well as numbness.
I am very frustrated. My ear dr told me that he would have never recommended the surgery with only one minor symptom. I don’t know if I can be help. Does anyone know? Thanks for listening.
Susan, what surgery did you have?
I have suffered with the following symptoms for thirteen years;
The sound of my voice, every step I take resonates through my head. Any general touches to my body I feel through my head. Eating anything crunchy is so loud through my head I cannot hear conversation. Touching (especially the back of my head behind my ears) is agonizing. My vision gets skewed (the room moves) with all of theses symptoms as well as leaving my dizzy, exausted and unable to focus.My life has become unbearable this way.
In 2003 a neurologist thought it to be tullios or Scd but an Mri showed no dehiscence. I have been suffering since . I am going back to the drawing board because I can no longer live this way. How can I have almost every symptom of scd amd it not be it. I am going to aak for another mri. Does anyone have any input. My heart is with all of those who suffer.
Gabor Mark.Barrington illinois.
The Dr. suspect SSCD and ordered a CT scan. They said if it was I would need to go somewhere else for treatment. I live in Louisiana. Do you know someone that it very qualified and trained with this diagnosis?
Gabor Mark, you need to talk to an otologist and make sure to bring a list of every symptom you have. My Dr. began suspecting of my SSCD with one particular symptom I had left out thinking it wasn’t a big deal. It’s very important to mention all of them. He found it initially with a CT scan.
Shan Moses, I found an excellent surgeon otologist with a lot of experience on this condition in San Antonio, TX. His name is Brian Perry, but your otologist in Lousiana should have an idea of who can treat this closer to you.
I had surgery on my left ear. I have scds. the surgery went into my left ear did not work. i’m back to the beginning . going back to see doctor today. having a terrible time of it, I am 72 years old , very active person hiking etc. now it put me down at times.
Fistula and sad worked for me, then did reverted back after about 7 weeks. I’m how learning to live by 90 % less talking and listening. Radical different life but no more opening my head unless I absolutely can’t stand my own voice like before surgery. Details ? I will to glad to email everyone affected my this mess.
Every is great – just that some are greater then others!
I live in Louisiana and had the SCD repair done at Our Lady of the Lake Medical Center in Baton Rouge by Dr Arriaga. I am two months postop and the only symptom that I still have is the imbalance/dizziness. I still do therapy daily which I do at home. I am still in the recovery stage and it may take time but I feel so much better that I would recommend the surgery to everyone with this debilitating disease
Debra,
I am glad to hear you are doing so well. I hope the dizziness and balance problems go away.
Hello my name is Jess Harley and I too have been suffering with SCDS since early 2008,I had MF craniotomy on 2009 however was not successful I am too back to the drawing Board trying to find ways to relieve my Severe Symptoms and for me it’s the Vertigo/Dizziness and desiquilibrium along with auto phony,brain fog,ear fullness etc etc well you all are familiar with these horrid symptoms.Anyways I will be seeing my ENT doctor again they want to try a procedure that May or may not work,because my left inner ear is the affected one and I also lost my hearing after brain surgery,and in all reality I was warmed by my Doctors that it may happened;So this procedure is called a chemical labyrenthectomy where they instill 2 drops of an antibiotic called gentamicin in the hopes to kill my vertigo and dizziness so I probably will have this procedure done in the summer because I was told that I may lose all my equilibrium for about two weeks or more so my hubby will be home with me then to attend to me 100%.Well I hope and pray for all of you and this is my Story a constant battle but I have The Lord who is strength and my family hubby and wonderful kids what else can I ask for?The Lord will get through this horrid Illness I have lots of faith.Thank you all for reading my story and I wish you all Well and many Blessings!!!!!
Jess, that sounds very difficult. I hope you will check on SCDSSupport.org to see if anyone else has had that procedure. The best of luck to you.
I have scds. had inner ear surgery pluging and it didn’t work. now have appointment to see another doctor for surgery on capping the hole. I have some good days and bad days now, it feels like am going crazy at times, sleep a lot. I am 72 , I hope it helps me. Charles kovalick
Charles, I hope it helps too.
I had a round window plugging which failed. went back to surgeon, they would like to try the plugging again, before the capping of the semicircular , its my choice. I am at a point just don’t know what to do. thinking about the plugging,lesser of two evils.
Charles, I’m sorry the surgery didn’t work. Why do they want to try plugging again, when it didn’t work before? Do they do more plugging than resurfacing procedures? Can you get a second opinion?
a new surgeon wants to try the plugging again on the 17th, getting another opinion on the 9th in University of Pennsylvania medical center,Philadelphia,pa. we’ll see what comes of the visit then about plugging it again or go with the capping. I have some decent days and then I go down for another few days. I just can’t wait to get this out of my head and be some what normal again. chuck
Yeah, I can understand that. It must be rough to have to wait.
Gabor Mark, a MRI will not find the dehiscence. You must have a high resolution cat scan. We had to insist on one as they tried to say it was migraines. Already had an MRI and regular CAT Scan which showed nothing. It must be high resolution. Please try again:)
pa medical center would not take me due to my insurance,well any how massachusettseye and ear,dr. Daniel Lee was recommended by somebody on my support group. have a appointment july 3th for test and to see Dr. Lee. hopefully everything will work out. chuck
Chuck, I hope so too. Keep us posted.
Hello, I am 49 years old, and have always had asthma and allergies. This year My husband and 15 year old daughter, went to NYC for New Years Eve, it was a great time for all , and probably the last time I have smiled or enjoyed life. I caught a bad cold after our flight home, was sick for a few weeks, then the heart beat started in my right ear. By Feb. 22nd, I was in the ER, the heart beat was so loud in my head, my head was throbbing , the room was spinning,( NO ONE knew what this was), believing I was having a stroke,or aneursym. I was sent on quite a medical journey. (I had an angiogram too, which was an ordeal ) I am now up to 15 doctors, and finally diagnosed with SSCD, by a temporal bone cat scan ONLY. I am exhausted all the time, and the noise does not stop, not for a second. I have been to 4 ENT doctors, audiologists, etc… This has been a life changing , experience, and I am losing faith.
Elizabeth, please don’t give up. I hope you can find a surgeon to help you. I don’t know where you live, but some good places to research include Johns Hopkins University (where Dr. Lloyd Minor invented the first surgery for SSCD) and the Ear and Balance Institute in Louisiana. There are surgeons with experience in treating SSCD in many other parts of the United States as well. Have you tried the website SCDS Support?
Elizabeth hang in there,you got a husband and daughter who will help you through this ordeal. there is help out there. I’m 72 and I have the same results that you have. I plan sometime in the weeks ahead hopefully to get help. Don’t give up . year and a half I have living with this. you will make it, take care. chuck
Dear Elizabeth, if it is of any consolation, some of us have suffered this terrible condition for years before it is diagnosed. Arm yourself with patience and follow the process. I avoided the operation for over a year, hoping to get through without risks, but eventually, it was just not possible anymore. I had the plugging and I cannot say I am 100% better, but it definitely freed me from the worst symptoms and improved the quality of my life considerably. The recovery is not fast or easy, but after four years, I would do it again if I had to. Good luck and chin up.
Hello Everyone,
Thank you , thank you, for your support. I am sorry to sound so negative, I work with orthopedic medicine everyday and see very sick people, suffering in pain and have been grateful to just live a life without asthma for a day, and to continue on no matter what illness I have endured. However, this has been so hard for me to handle, and losing days of my life, by not be able to get out of bed, has been emotionally devastating, let alone my physical symptoms and the constant heartbeat,which can be maddening. I do take blood pressure medicine to lower my pressure to “mask” the symptoms, and valium to knock me out , when I can not take another second of the fullness,headaches, noise and imbalance. I am in the process of sending out my records to doctors who only treat SSCD. Although, flying is terrible for me and I need 2 days to recover, just from a 3 hour flight, so I have to build up my strength to fly anywhere and driving is almost as bad. Does anyone know if negative tympanic membrane pressure is part of this? I had 2 separate opinions, in one ear I was a -250 the other ear was worse. This pressure has changed many times, but always in the negative. This is one reason why I can NOT fly well. ( One trick is to fly with the soft ear sponges, placed tightly into your ear, chew gum during take off and landing and take a decongestant before flying.) Once again, thank you for your support, I will keep you posted. I hope this doesn’t offend anyone, but I now PRAY for people with this, or any ear problem, sending healing energy their way. xo elizabeth
Just got an SSCD dx today. Fourth dx trying to decide what has been causing my severe vertigo, tinnitus, hearing loss and more. I feel good about this though because they dx’ after a high res CT. I have an appt with a Dr. Stacker to discuss surgery. I think I have his name right. I was told he is a world renowned ENT. Anyone ever heard of him. If so, can you tell me what you know.
Also, what can I expect for recovery time from surgery? I am worried about missing a lot of work.
Anything anyone can share with me is appreciated.
Thanks, Becca
Becca, I hope this dx helps you resolve the problem. Keep us posted.
Recovery from the actual surgery (plugging) took me about two weeks, then six more to be able to drive, and about a year to overcome left over imbalance through therapy. It sounds like a long time, but SSCD is much worse. Good luck and chin up!
Hello Everyone,
I have posted a few times regarding my SSCD. All of my records are being reviewed at Johns Hopkins Hospital in Maryland. Dr Canter, I belive, who studied under Dr LLoyd Minor, the “founder” of SSCD in 1998.
I will keep everyone posted, it takes about 8-10 weeks,I sent my records as an independent study, choosing not to fly.I costs about 800.00 on my credit card,but I am desperate.I have been seeing a chiropractor and I did see some relief, she worked on my cranium and believes being born with forceps has had a lot to do with SSCD patients.
This weekend has been particularly awful,because talking or speaking loudly, takes a big toll on me. Tonight, I was awakened by the LOUD noise in my ear,and terrible headache,and I am trying to avoid the medicines, but I am exhausted. I also,am a busy mom who needs to get up early,enjoy my daughter’s 16th senior year ,go to work and pretend everything is alright for my family’s sake. It has been a difficult time, but I am trying to accept this and do some soul searching!
Just wanted to mention, the chiropractor treatment did help with the hearing loss.
Also, you need to make sure you choose one that has treated some cranial issues.
It may not be the cure, but for some people with mild pullsitile tinnitus, dizziness,stiffness, it could help -anything is worth a chance? It is interesting to note , her patients who have SSCD and its various symptoms have all been born with extreme forceps use during a difficult delivery???? Take Care xoxoxo
I think of you all often, and realize, I was very ignorant to this level of suffering, and what people do endure. xoxoelizabeth
Elizabeth, thanks for the update. I look forward to hearing about what Johns Hopkins has to say.
i live in india . can anyone pls suggest me a dctr for sscd. m suffrng from ths since lst 3-4 yrs.plz help i cnt tolerate my ear pains nd dizziness…
Mitti, have you tried SCDSsupport.org? You may find someone there.
Hello Everyone,
I have not received any results from Johns Hopkins regarding my SSCD. This is such a long wait. In the meantime, I wanted to mention, I did purchase a sound machine and keep it near my bed at night on ocean or thunder setting rather loud,( my poor husband).
I bought it for about 30.00 on amazon, its by Howmedics, it is not a cure but does mask the symptoms.
Thank you, xo elizabeth
Elizabeth, I’m glad that the noisemaker and the chiropractic have been helping a little. I hope you hear from Johns Hopkins soon.
had my operation at boston eye and ear , in sept. 11th. all the noise was gone out of my head what a great feeling. felt great for three weeks and then went off from pain killers. every 8to 10 days i would have about 2 days of pain, this went on like this for weeks, then it went to 5 days feeling bad really bad, then just like that i got back to normal, no dizzyiness , no off balance, i regained my hearing,now i can hear my wife, i can hear my bird clock and i can stand the noise in a resturant, got ringing in my ear but it feels so good the prayers from everybody and frends and family helped me through this ordeal.. dr. lee did the surgery. i go back jan. 23th for check up. if i any body wants to talk this site is great . thank you
Thanks1 I’m glad to hear you’re feeling better.
Greetings,
My 46 year old stepdaughter is in the pipeline to get SSCD surgery at UCLA. She has been debilitated with SSCD symptoms after a series of car accidents and recently a scan showed the telltale dehiscence. Is there a way of evaluating the medical service (surgery) providers? The “plugging” vs the “resurfacing” techniques? I would sure appreciate some guidance.
Thank you
Kerry, my original understanding was that the resurfacing did less damage than the plugging. This was after Todd had his first surgery with Dr. Gianoli in 2009. However, some time later Todd talked to another ENT who said that both damage the ear canal. This second doctor is not one Todd trusts—Todd went to him early on with his symptoms and didn’t get any relief. The best way to evaluate doctors is (1) to get a clear sense of how many times they’ve done this surgery, how likely it is that symptoms recur, whether any of their patients went deaf; and (2) to talk to their patients, so you could ask this surgeon if that is possible. Another way would be to find one doctor who does resurfacing and another who does plugging and ask about patient satisfaction after the surgery, especially patients who have had surgery on both ears. A third way to evaluate doctors is to get on the forum at SCDSsupport.org. It’s difficult to explain the long-term results of this surgery, since doctors have not been doing it for that long (two decades, tops) and there isn’t a lot of evidence about long-term effects. I hope this helps.
Hi Kerry,
I find this explanation by Dr. Carey very helpful in understanding the difference you refer to. I had the plugging because my otologist felt the same way as Dr. Carey and yes, it takes longer to recover because you lose the functionality of your canal, but therapy helped tremendously. My brain eventually picked up on this function and helped me regain balance. It was not quick, but it happened gradually, in my case, over a period of six months or so. It’s been 5 years and I still do my exercises, particularly when I begin feeling a little dizzy again. It is very important, though, not to strain specially during the few weeks after the surgery. Don’t lift heavy things, do not push unnecessarily. This is a change in your life you may want to make permanently to avoid the risk of that plug moving. Good luck.
Here’s the link.
Thanks, Christina, that was very informative.
Hi ..I was diagnosed with SCDS 9 years ago in London but emigrated to New Zealand just after .As this was a newly found medical condition The surgeon had no experience in treatment so I decided to wait .Has anyone any knowledge of successful surgery available here ? I’m in auckland. Thanks
Hi – I have a scan diagnosis for SCDS and looking for the best people in NZ to operate.
Currently I’m with Dr Phil Bird in Christchurch, where I live.
Who did your researches point to ?
Hi Alan, I had some surgery done with Philp Bird in Christchurch for SCDS. I have recently had an op on the north island with Steven Toynton. i’m 6 weeks post surgery and still in bad shape. I would be keen to chat.
Hi, Sam. I’m sorry it took me so long to respond. I don’t know of anyone in New Zealand who treats this condition. Your best bet would be to contact ear, nose, and throat specialists to see if they have treated it. You may have to go see them to get this information, but you could try calling their offices and seeing if they would give out this information over the phone.
Hi I have recently had surgery for SCDS, im having worse symptoms now than before, Is there any one out there that can tell me if it gets better, I’m more dizzy now than I ever was and its depressing.
Di, I’m so sorry you’re having problems. Here are some places where you might find support:
A Facebook group started by the SCDS Society:
https://www.facebook.com/groups/473734832679494/
The SCDS Society’s website, which has information you already know:
https://www.scdssociety.com
Another Facebook group, SCDS Support, the “original support group.” They used to have a website; I’m not sure if it still exists.
https://www.facebook.com/groups/SCDS.support/
And here’s yet another FB group, Superior Canal Dehiscence Syndrome Support Group:
https://www.facebook.com/groups/221257197900489/
I hope you can find someone in one of these groups to help you.
Thank you, Beth.