My SCDS Story

My body is constantly fatigued. Like Sandra Bullock at the end of Gravity fatigued. My concentration and short-term memory are fried. It feels as if my brain is floating loosely in my skull and cannot keep up with the movement of my eyes.  I turn my head right, and my brain locks in two seconds later. I have the balance of a drunken toddler. My head pressurizes like a hot air balloon with the slightest bit of physical activity. Throbbing pulsatile tinnitus keeps me awake at night. Loud noises stab through my skull and make me vibrate like a human gong. The slightest bit of emotional stress instantly sends me over the top. I’m the fractured shell of a man who one month ago set a personal best in a 5K and was routinely running over thirty miles a week at a nine minute pace,  but now is stuck in bed at noon. I have no answers as to why I feel this way, and I won’t have even the slightest clue for another seven months.

 July 10, 2013: the last entry in my iPhone training log. I ran 6.5 miles that day, and entered this note: “Muggy. Too early.” I didn’t feel very good as I cooled down, and must have rationalized that an earlier than usual start (to avoid the blazing heat) had caught my body off guard. Two days earlier, on my 41st birthday, I had cut a run short in the rain because my quads were burning – I found this unusual, but chalked it up to overtraining as I was trying to quickly ramp up for a 10K race. Since May 1st, right after the Kentucky Derby (and a hangover that lasted a week), I had lost close to thirty pounds in about two months through a strict regimen of diet and exercise. I was finally getting healthy after two years of severe sinus and lung trouble. I looked and felt like the guy I wanted to be. I was writing well on a screenplay that I cared a lot about. It was summer. It was all good. Or so it seemed. I haven’t gone for a run since.

 I took a few days off but didn’t recover. It couldn’t be dehydration after a week. I began to notice my heart constantly pounding in my right ear. A veteran of a thousand ear infections, this was nothing new to me, but my ears were ventilated with tubes and my sinuses were as healthy as they’d ever been. High blood pressure? No. I was 110 over 60 with a pulse in the low 50s. Within a day or two, I began to feel twinges of swimminess and disorientation. My balance felt off. A bit of trouble with our rental house in LA sent me over the edge with stress. And then the fog descended: a deep gray mist of dense confusion. My brain simply would not concentrate. Forget writing, I barely had enough focus to work the phone and make doctor appointments. I had to quit my three-cup-a-day coffee habit cold-turkey, as even a decaf latte would set the room spinning and my anxiety soaring. Alcohol was impossible, too. One drink made me feel like I’d downed the whole damn bottle, and then I felt hungover for two days. A gorgeous Outer Banks vacation was squandered lying in bed due to what had become full-on vertigo. In the course of about three weeks, I had gone from 60 to zero. Dead stop.

 The previous November, I had my third sinus surgery to clear polyps and ease chronic infections. I’d spent the better part of eighteen months, as we moved from LA to upstate New York and then to Chicago, living on antibiotics and steroids. The surgery was supposed to help, but it didn’t, and I became even more sick. My ENT put me on a regimen of gentamicin rinses to kill the highly resistant infections in my sinuses (I had more than one bug at a time). Essentially, I would water board myself with liquid antibiotic. I’d hang upside down off the side of my bed and fill my sinuses to the brim with this stuff twice a day for six months. It worked. The treatment killed everything and allowed me to recover and regain my fitness – until July, when I began to think this treatment was the cause of my new problem. Gentamicin is ototoxic.  It kills the little hairs in your inner ear that are essential to the operation of your balance system. In fact, they use it to destroy the vestibular function of people with such severe vertigo that it cannot be cured or mitigated. It is ear poison – the nuclear option – for people who have no other way to stop the world from spinning.  Given that my ears were ventilated with tubes (negating the natural reverse pressure of the Eustachian tubes), and that I was filling my head with liquid while upside down, there was a strong chance that the ototoxic gentamicin had reached my inner ear and permanently damaged my vestibular system. My ENT assured me that if this were the case, my brain would eventually figure out how to cope with the situation. It’s called “neural plasticity,” he said, and it could take up to two years.  I wasn’t settling for that.

My primary care physician cautioned that I was just getting older and these things happen. She suggested that maybe it would all just go away. An ER doctor took a CT of my abdomen and determined that I simply had a bad case of gastritis. I was referred for a psychiatric consult, as perhaps this was a chemical disorder of the brain. It wasn’t. A Chinese Medicine herbalist told me that I was just allergic to absolutely everything.  The acupuncturist said he could fix me in one visit. I let him try twice. The dentist thought it might be my wisdom teeth perforating my sinuses. I was sent to an endocrinologist who informed me that all of this trouble might be the result of “low-T.” She referred me to a urologist who didn’t think my T was too low, but was willing to give me the testosterone anyway…just because. My physical therapist believed that I was suffering from Benign Paroxysmal Positional Vertigo (BPPV), and we began a series of exercises and Canalith Repositioning Maneuvers to clear crystals from my vestibular canals. That didn’t work either, but she became a great gift to me, and was able to reduce my symptoms through massage, craniosacral therapy, and balance exercises that ultimately restored enough function so that I could return to work and appear to most people as relatively normal.  Finally, and you would think obviously, I was referred to a neurologist who ordered an MRI of the brain. I waited a week. MS? CF? Brain tumor? I finally called her. “Oh, sorry! Yeah, it came back clean. Good for you!”  While I knew it was utterly ridiculous, morbid, and disgusting, I was actually hoping they would find something. Anything. An answer.

I begged my ENT for more options. Surely there must be a true specialist I could see. I’m not sure why it took him six months, but he finally referred me to a specialist in Chicago at the Northwestern Medical School: Dr. Timothy Hain, known as “The Dizzy Doc.” Dr. Hain is a world-renown dizziness expert, and, not surprisingly, it took me six weeks to see him. I spent an entire day undergoing tests and evaluations the likes of which were once done in secret cold war labs far below ground in the 1950s. Spinning chairs, metal probes, sound booths, cold and hot air injected into my ears….  After five or six tests, it became clear to everyone in the office that, “yes, you have a problem! But….sorry, we still don’t know what it is.” I was losing hope again just before the last procedure of the day, called “The VEMP Test.”  When it was performed on my left ear nothing happened. When we did it on the right side, the walls of the room started jerking up and down as if I were pinned to a trampoline being bounced on by a gymnastic giant.

Ah-ha!

The tech ran to get the doctor, they conversed, and then he asked: “Brad, can you hear your eyeballs moving in your head?” Indeed I could. It was a grating, sand-papery swishing sound. They put a tuning fork on my head – I heard it clearly in my right ear and not my left. They put the fork way down on my left ankle – again, clear as a winter church bell, but only in my right ear. The answer finally came: “You, sir, have a hole in your head. Probably.”

The suspicion was that my particular demon was named Superior Canal Dehiscence, which essentially means there is an opening inside my skull, below the brain and over my ear canal, which creates a “third window” in my head causing sound vibrations to bounce around inside my brain. It also throws the balance system for a loop, so to speak, which makes the brain work incredibly hard to maintain basic equilibrium, thus the leg weakness, brain fog, memory loss, and fatigue.  It had begun to also affect my spine, as the strain of remaining upright was contorting every muscle in my neck. Autophony, or hearing the internal sounds of one’s own body – pulsatile tinnitus, eyeball movement, even creaking joints, jaw and vertebrae – is another major symptom, as is the tullio affect, or sound-induced vertigo. Loud noises rattle the brain and create dizziness as a result of this condition. It all made sense after seven months. But, in order for it to be real, it had to be confirmed by CT Scans and MRIs, which took a good long while and a lot of deliberation, as my dehiscence was only 3mm wide. So small, and yet so damn disruptive.

I met with two Chicago surgeons who have experience with Superior Canal Dehiscence and discovered that there are two surgical options. The first is the less invasive “transmastoid approach,” which is an outpatient surgery with few complications, but it does not allow the surgeon to actually visualize the hole, and has a lower likelihood for success. The “middle fossa approach,” which involves a craniotomy, allows for better visualization and a greater chance for success, but comes with significantly more risk. Because the second surgeon I met with believes there is need for a more extensive repair to my tegmen (the boney shelf inside the skull that holds the brain in place), I’ve opted for the craniotomy. So, essentially, you fix a small hole in the head by creating a much larger one!

 Why does this happen? They believe it’s congenital. Some people are born with weak spots over the inner ear, and that at some point, usually in a person’s 40s, the bone just pops open. You could blow your nose too hard, get hit in the head, or maybe it’s even the result of chronic sinus and ear infections. Perhaps my bones have been weakened by Celiac disease. Who knows? Superior Canal Dehiscence was not first discovered until 1998. It’s so new and so rare, in relative terms, that the two surgeons I spoke with have only performed thirty of these repairs between them – and yet they do hundreds of more complicated procedures each year. The effects of the “syndrome,” or the symptoms a person feels while suffering from the dehiscence, vary in type and intensity from one individual to another. How many people are dealing with this and have no idea what it is, or are getting the wrong answers? How many people don’t live in a large city with top-notch medical resources, or don’t have the insurance I do, or don’t have the time and perseverance to push through the walls of this medical corn maze to find the exit? It’s sad to think about. I’ve let my (now former) ENT know exactly what my diagnosis is, in hopes that should he run into it again, he’ll be able to help people faster.

Here’s how it goes: they shave a strip of hair behind my right ear, make a four inch incision, then push aside the skin and muscle to expose the skull. They cut a hole in my skull, move my brain out of the way, visualize the bone over the ear canal, and using a mixture of bone paste and my own bone fragments, they putty the dehiscence like you would a hole in the wall. Using that same paste, they will fill and reshape the tegmen (brain shelf), then resurface the skull, reinstall the bone flap they cut loose, insert titanium plates to hold it together, and close me up. It is estimated I’ll spend three days in the hospital, be recovered enough to return to work within two weeks, and be fully recovered within eight. The results, it seems, have been good over time. I’ve read about people who have returned to rock climbing and playing instruments in orchestras – two things I can’t fathom doing right now given how I feel. But there are risks. Some people lose their hearing entirely on the side of the procedure. There are also risks to the brain, so a neurosurgeon, Dr. Kazan, will be assisting Dr. Wiet in the ER. In the meantime, I’ve been taking a 2mg dose of Valium before bed, which has dampened the vertigo and other symptoms significantly. But, on the flip side, it also further depletes my sense of balance, making me more prone to falls. It’s a temporary remedy, but not a long-term solution.

I feel now that surgery is the only option for me. I have a young family, a creative and academic career to sustain, and a lot of running left to do. It’s time to get fixed.

My surgery was performed on February 12, 2014. The dehiscence and tegmen were repaired successfully, but I was left with profound hearing loss in my right ear. Symptoms of the left ear dehiscence manifested quickly following surgery and continue to effect me daily.

I’ll keep you updated on the Updates Blog.

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101 thoughts on “My SCDS Story

  1. Chris Carrier

    Wow, Brad. The most disturbing part of this story for me was how all the specialists guessed at diagnoses. I’m going through sort-of the same thing to a much less-serious degree and I know what its like to have hope of a treatment only to discover it has nothing to do with the problem. Specialists see things through their own specialist lens. While you do want to try everything in hopes of finding a cause/cure, you’re left feeling a little more hopeless every time a treatment fails.

    Congratulations on finally finding what looks to be a real solution. Good luck on that surgery. I hope we can run a race together soon. (30 miles/week at 9min/mile? Nice.)

    Reply
    1. Brad Post author

      Yeah, I was trucking before this started and thought I *might* be able to run that marathon with you, Chris. Though you would have smoked me. Thanks for your support and for following the blog. I hope you get answers soon.

      Reply
      1. Marian

        Wow. I have been suffering from all the same symptoms. I have had all kinds of tests, all which came back clean. It was originally thought to be MS, I am now going to a psychiatrist because I was told all my symptoms are from stress. So now I am taking medication that makes me even more dizzy.
        Thanks for sharing this. I am going to ask my doctor to test me for this

      2. Brad Post author

        Did you have the high res temporal bone CT scan? Did they test you with a tuning fork or do the VEMP test? Those are the best indicators I’m aware of at this time.

    2. chris

      Thank you for sharing your story! I was recently diagnosed also with this, but I do not have dizziness but the sensitivity to loud sounds, especially R ear. I also have high frequency hearing loss in both ears and they can’t tell me why. I think it was combo of having this condition without knowing it and doing antibiotics along with this steroid nasal spray + enormous stress that caused it all. I only hear my R eye sometimes at the end of the day or beginning of the day, but then it goes away. I have this constant cracking of my inner skull (mid/top)/neck that I always hear upon moving my from L side to front. I had a top of head injury which I believe caused all this, not to mention a kick on my R jaw towards L which I also think is the culprit. Anyone else have similar symptoms?

      Reply
      1. Abbey

        Yes, I also have bilateral high frequency hearing loss, dizziness and vertigo around loud noises and sudden movements and being up high or climbing stairs and slight internal noises like hearing my eyes move and neck and jaw….I am very fortunate that my symptoms are not as bad as some others. I have learned some muscle memory excersises like walking on a treadmill for an hour a day helps for when you feel that dizzy feeling to not fall down and also j do think my brain had acclimated and compensated for some changes ..

    3. Jo'Ann Newton

      Love seeing another’s story. i also had a semicircular canal dehiscence. But when they did the catscan to prepare for the surgery, they also found my brain was herniating into my middle ear occilas. They fixed both in the same surgery, I had about an inch and a half of bone missing in the semicircular canal so it was plugged. For the brain herniation, they took off a square inch of my skull and thinned it in half to make 3 inches and grafted that in to hold up the brain. During that part of the surgery, they had to hold the brain up.

      It has been six months and I got a virus that gave me a migraine which gave me vertigo. And I have now had it for 2 weeks. Hoping it clears on its own soon per my primary. Otherwise I have a follow up with my surgeon in July.

      Reply
  2. Pingback: Track and Field | Superior Canal Dehiscence Syndrome and Me!

  3. williamsfive

    I started crying when I read your story. Mine is similar. I’ve seen several “professionals” all with differing “theories” and no answers or relief in sight. I recently went back to my ENT bc my symptoms were getting worse I had read about peri lymph fistula and thought it was worth a shot asking him again. He suspects SCDS. I had a ct a week and half ago. Waiting another week and half to see my doc again for the results.(waiting. Always waiting) I’m almost hopeful bc there is a solution whereas the other things that I had suspected (MS, tumor, other autoimmune diseases) don’t really have a solution. Although I am very fearful of surgery (THIS surgery anyways!) I’ve been dealing with this for about 10 months. In early January I started feeling almost like my old self, even cancelled my first neuro appt. (only to have another episode that night!) I started working out again (it had been months since I ran- didn’t begin running until about two years and finally started enjoying it!) made a goal to run my first half-marathon later in the year. But haven’t felt the same since Jan 15 and progressively gotten worse. I have oscillopsia (unstable vision with any movement- 24/7) so while I am fearful of having surgery, the hope of feeling normal again and being able to take care of my children the way I would like to and should, overcomes my fears. Thanks for sharing!

    Reply
    1. Brad Post author

      I understand and I’m glad you found me and glad you wrote. I’m bilateral and was managing pretty well before surgery, and only went through with it because my doc convinced my I might start hemorrhaging cerebrospinal fluid. I’m not sure if I can say I’m glad I did it. Today, and for the last week, I’ve been feeling pretty bad. For about two weeks before that, I felt pretty damn normal. Not sure if it’s the repair or just the other side acting up. It’s a shitty, shitty thing. If I were you I’d get to the very best surgeon you can find — Lee at Mass Ear and Eye, or the guy at Hopkins. I’d demand immediate steroids post op, maybe even antivirals, and I’d do nothing. Rest completely. Those are things I didn’t do that I wish I had.

      Reply
      1. Brad Post author

        I sent you an email, Ed. But long story short, I DO recommend Dr. Wiet highly, but I also recommend going into this with as much information as possible to help you make the right call about your procedure and treatment.

      2. Andrea

        Brad, your story is quite similar to mine though I’ve not taken so long to get a diagnosis – dehiscence on both sides. When I found out about the typical symptoms it was such an aha moment; so many of my weird symptoms in recent years make sense now and although I now gave the difficult decision about surgery ahead of me it’s a relief to know there really is a defined problem. Many of your clues were mine too – fatigue making exercise so much harder, my vision jumping and my pulse beating my eyes like a drum, not being able to tolerate any alcohol (big drum beating in my head!), brain fog induced by even easy things (I couldn’t deal with property maintenance issues at all), etc, etc. I just hope my surgery goes as well as your first one did.

      3. Brad Post author

        I hope yours goes well, too. Thanks for writing in. I wouldn’t at all say mine went perfectly. I still have some issues and have lost hearing completely in my operated ear, but am slowly making progress. Let me know what you decided and how it goes, okay?

  4. williamsfive

    I’m so sorry 😦 How long ago did you have your surgery? How long after did you feel “normal” and for how long did you feel “normal”? Do you really think it’s your other ear? Would you consider having it done again on the other side? Have you had a bone density test? Why the anti-virals post-op?
    I don’t even know if this is what I have… I will let you know tho, when I find out… and I’ll probably have more questions! Thanks for replying. Hang in there! (that’s all we can really do anyways, right??)

    Reply
    1. Brad Post author

      My surgery was Feb 12. I still don’t feel normal, and am told it can take a year. But I’m bilateral, and I’ve lost my hearing in the surgical ear, so those are likely reasons why I’m still adjusting. I may not be able to have the other side repaired because of my hearing loss. They wouldn’t risk making me totally deaf. We’ll see how my symptoms progress Some docs use anti-virals to heal nerve damage and protect from further damage right after surgery. Dr. Lee does this often, I believe.

      Reply
  5. Ed

    Brad, thank you very much for the email and you story. I am really looking forward to meeting Dr. Wiet. Everything I have been dealing with these past 15 years all make sense now.

    Reply
  6. James Romine

    I’m a bilateral case as well. I was first diagnosed in 2008 via a CT scan. Ive since had all the major testing or “torture chamber ” as I call it. I first began noticing symptoms in 2005. elevator rides and any thing off the ground floor made me a bit dizzy. Over the years the symptoms have gotten worse to where I cannot ride an elevator at all or be anywhere near certain sounds or vibrations. I’m trying to hold off on the surgery until I reach my retirement in 19 months but its desecrating my body rapidly. The lack of physical activity has fattened me up to the point that even the small things I could still enjoy are no longer possible. If your suffering from this disease I highly recommend you see Dr. Gerard Gianoli in Covington Louisiana. But fair warning he doesn’t accept insurance. its cash up front.

    Reply
    1. Brad Post author

      James, I’m sorry to hear you’ve been suffering for so long and appreciate you sharing. I’ve already had my surgery, and am in the process of moving on. Let me know if you decide to go through with yours.

      Reply
  7. Sara

    Brad, How has your recovery been since surgery. I too am bilateral and just had a MF last week on my symptomatic side. Its a crazy disorder and hard to push through on some days but Im trying to stay positive! I would love to know how you are doing…everyones story helps me deal with it. My story is very similar to yours.

    Reply
    1. Andrea

      I am also bilateral and had one side operated on a month ago – transmastoid, which is much less traumatic than media fossa. As the operated side still hasn’t ‘settled down ‘ I feel virtually no improvement in my overall symptomatic condition though am told I need to give it quite a while to judge. But I really relate to Brad’s comment about how his eyes lock on to objects out of sync with his brain. I still feel like I’m walking with a hand held camera in my head.

      Reply
      1. Brad Post author

        I still have that problem due to my “good ear” also having a dehiscence. The transmastoid may be the only way to fix my other ear as there is less risk for hearing loss, given my “fixed” ear is deaf. Hope you get better soon. Please keep in touch and let me know!

    2. Brad Post author

      Hey Sara, thanks for writing. I’ve been traveling a bit so the blog has been neglected. I’m writing a post now with an update. Check back in a little while and please keep in touch. We’ve got to stick together! Are you on the Facebook support group?

      Reply
  8. Pingback: One Year Ago | Superior Canal Dehiscence Syndrome and Me!

  9. DL (@2toneDL)

    Brad, what an interesting story. Recently, it was confirmed I have SCDS. My quest has lasted about 12 years, but I’m quite certain I’ve been affected for 20+ years. As I told the doctor, I’ve been able to hear my eyeball move since high school.

    From your story, I was particularly interested by your account of brain fog, memory loss, fatigue and the affect on your spine. I was hoping you had resources you could direct me towards for further reading on those points. The stories I come across on the web are of those with a mid-life impact time. Such as the sportscaster Sean McDonough, who basically woke up symptomatic the day after getting a golf club hit him in the head. Symptoms like autophony, imbalance and hearing extra sounds is drastically new with an obvious and immediate impact on quality of life. What I’ve been unable to find is anyone with a story about, or information related to, having symptomatic SCDS, possibly from childhood.

    For now, I’m scheduled for a battery of balance tests to acquire a baseline. From there, the doctor and I will discuss the future.

    Reply
    1. Brad Post author

      There is a link on my homepage to the right about the effects of vestibular disorders on cognitive function. I find it to be pretty powerful and have shared it with all of my docs. As far as childhood onset, I have no information, unfortunately. But the facebook group might. My docs told me that they mostly see onset in the 40s. I think mine had to do with bone density issues from celiac disease, chronic ear infections, and perhaps too much prednisone.

      Reply
  10. Jennifer Stickley ( Jenny)

    Hi, I was diagnosed with SCDS September last year having had strange symptoms for many years before that. Fortunately my GP realised I had a problem, but because my symptoms were non specific for so long, she couldn’t pinpoint the problem. Finally, as the symptoms began to get worse she recognised what the problem was. I have it in both ears and although very unpleasant I do not have too much of a problem with balance for some reason. I have seen the CT result and the holes are quite noticeable but I don’t have the actual size of them. I saw a doctor at the ENT hospital in London who gave me the impression that he couldn’t wait to operate, probably wants to get his name in lights, so to speak, as he does not see too many patients with the problem. I have to go back to see him in January 2015. It would be great to have contact with folk who have had successful surgery.
    I sincerely hope your recovery is progressing.

    Reply
    1. Donna

      Hi – I have recently been diagnosed with SCDs going back next week to the Dr he will discuss surgery further – did you go ahead with yours and how did it go

      Reply
  11. Andrea

    Jenny, I had transmastoid surgery in London this June and can share my experience with you if that would be helpful. I also have SCDS on both sides and might have the other side done later this year.

    Reply
      1. Jennifer Stickley ( Jenny)

        Hi Brad, many thanks for setting up this site. It is really interesting reading about other folk with this wretched SCDS. It sounds to me that you were a hundred times worse than I am and although I now know that I have had symptoms for many years, so far I am fortunate not to be struggling with vertigo. Apparently the holes in the temporal bones bilaterally are quite large and bending is my biggest trigger for pressure in my head. I have recently had knee replacements and can hear the new joints loudly. In fact recently my head is filled with so many new sounds. I do suffer fatigue and sometimes feel pretty rough with it, but I consider myself fortunate not to have much in the way of dizziness.
        I really hope your next surgery goes well for you and I will be thinking of you.
        Best wishes
        Jenny

    1. Jennifer Stickley ( Jenny)

      Hi Andrea, thanks for your reply. I would really love to discuss your experiences with SCDS and the results of your surgery. You can email me directly if you care to, would it be easier?
      Jenny

      Reply
    2. Jenny Stickley

      Hi Andrea, as I haven’t heard anything from you I wonder if you saw my reply. In fact both letters I wrote on the forum have now gone for some reason. I would really be interested in chatting to you about your surgery please.
      Regards
      Jenny

      Reply
  12. Lea Johnson

    I’m going in Monday for grommets to relieve the pressure in my ears. The doctor will discuss my options after putting them in. I’ve been in agony for so long, 12 years , and have been dizzy for as long as I can remember. It’s been a living hell , and I’ve seen some of the best doctors in Australia, neurologists , neurosurgeons and ear nose and throat . Plus a myriad of other doctors because no one had a clue what my problem was , apparently I was supposedly stressed. You bet I am! Driving up the slightest hill can give me a migraine from the pressure in my ears. I’ve re-read your story a couple of times in the last 4 days. Did you have a lot of neck pain? Mine is extremely sore.

    Reply
  13. Jennifer Stickley ( Jenny)

    Hi, as I haven’t heard from anyone including Andrea, I wondered if I might have clicked the wrong thing. There doesn’t appear to be any further contact with Brad from anyone. What am I doing wrong?
    Jenny

    Reply
      1. Jennifer Stickley ( Jenny)

        Happy new year Brad.
        I am due to see the consultant in London again on Monday. I know he is desperate for me to have surgery, but I really don’t think my symptoms are as bad as some folks even though he has classed it as severe.
        Did you get your other ear operated on?
        I will let you know what the doc says .
        Jenny

      1. Jennifer Stickley ( Jenny)

        Hi I was hoping to hear from you regarding your op experiences. I am due for another visit to the ENT hosp London on Monday and really do not think my symptoms extreme enough to have surgery. They are gradually getting worse and are pretty unpleasant but when I read some of the trouble others are in, I can live with it for a while.
        It would be very interesting to me to find out just how drastic the op really is, especially as I’m a theatre nurse.
        Hope you had a good Christmas
        Jenny

      2. Andrea

        Jenny, the surgery, TM, was fine. Look I’m off later today but would be very happy to talk on the phone if you like. My number is 07896 952688.

  14. Moses

    Brad i read your stories and cried, i looked at myself and i saw you in me.

    10 years ago, It feels as if my brain is floating loosely in a fluid in my skull and cannot keep up with the movement of my eyes. Every time I turn my head right, left and my brain locks in too. I have the balance of a drunken toddler. My body is constantly fatigued, I feel sleepy all the time and I snore any single moment am asleep. My concentration and short-term memory are fried and lost and cannot remember anything said to me within a second.
    My head pressurizes like a hot air balloon with the slightest bit of physical activity. Throbbing pulsatile tinnitus keeps me awake at night. Loud noises stab through my skull and make me vibrate like a human gong. The slightest bit of emotional stress instantly sends me over the top. I’m the fractured shell of a man who one month ago set a personal best in a 5K and was routinely running over thirty miles a week at a nine minute pace, but now is stuck in bed at noon. I have no answers as to why I feel this way, and I won’t have even the slightest clue for another seven months.
    Within a day or two, I began to feel twinges of swimminess and disorientation. My balance felt off. AS I was reading, books sent me over the edge with stress. And then the fog descended: a deep gray mist of dense of mental confusion. My brain simply would not concentrate and started having memory loss, difficulties writing, reading and cannot concentrate. I had to quite school and come back home because I could see the room, building, chair, trees spinning, in motion and my anxiety soaring. Alcohol was impossible, too. A little glass of wine drink made me feel like I’d downed the whole damn bottle, and then I felt hangover for two days with headache.
    I have feelings of fullness in my ear in which my hearing is completely reduced and low frequency conductive hearing loss, even in a noisy environment or background, I hear my own voice or movement,
    Over sensitivity to loud noises made emotionally uncomfortable and causes me to see stationary things moving, when I cough, sneeze, or lift something heavy, sound of children playing, cashier tossing coins.
    I feel like there is an a hole or an opening in my ear because I can sit in a meeting for about 30mins, chatting with friends, I will not remember anything discussed, difficulties following the everyone, understanding, I try to read I find myself steering at a book while my mind is somewhere else,
    I have blurring vision and persistent headache/migraine attack, I suffer from seizure in which I blackout complete for few minutes in which I cannot see anything feeling as if my brain is dead.
    I suffer from anxiety and panic attack from the loud noise or when someone surprised me, I feel disoriented and discontented, I feel like committing suicide.
    I constantly have a brain fog and my eyes is very sensitive to light and I also find it very difficult to use any computer or cellphones. I feel ringing in my ear and usual noise or sound, dizzy, tired and fatigue. Burning sensation on my body. Stabling pain in my head.
    My eyes keep dancing and moves involuntarily, cracking teeth and jaw, rapid heartbeat
    I developed other symptoms like short breath, pain in my spinal cord, difficulties walking, stomach cramp, stiffed joints and body, difficulties bending.
    Inability for my body to regulate temperature, develop sweat when its cold and my body is always hot like burning.
    I had CT scan of the head with and without contrast and it came out negative without any white substance,enhancing mass, no intercebral or extra-axial hemorrhage, no lobar cerebral or cerebellar infarction indentified.
    I also had MRI scan of the Brain with IACS/Posterior Fossa with and without contrast (to diagonised tumor) with T-@ Fast spin Echo and it came out negative.
    I also had XRay –Chest and it came out negative.
    I have spent over $8,000 on medical bills alone and my condition keeps getting worst. My mental confusion, memory lost, reduced hearing, blurring vision is getting worst and I am completely losing my balance.
    Please I kindly request you for your advise to help and safe me out of this long depression and stress in my life.
    Moses

    Reply
    1. Brad Post author

      Moses, thanks for reading and writing, and for sharing your situation here. I’m sorry you face such tremendous difficulties. I think a lot of your symptoms match SCDS, but many of them don’t as well. I’m not a doctor or therapist, but my only advice would be to keep pushing back against the doctors, researching specialists, and fight for the knowledge of what is affecting your life this way. I hope you find answers and relief soon.

      Reply
    2. AJ

      I was diagnosed with SCD about a decade ago. My hearing loss, dizziness, and nausea were manageable, so I chose not to have a surgery. However, my cognitive ability has gotten significantly worse. It has affected my job, and I am even considering a lower level position or just quit. This was not the case before SCD. I have seen many doctors and had numerous tests to figure out what is causing my terrible memory problems and my inability to focus . When I was diagnosed by Dr. Minor who discovered SCD, he never mentioned cognitive issues. I don’t know if I should have a surgery if I can’t improve my memory.

      Reply
    3. K.

      Hi Moses, did you have a HiResCT or normally CT of head? I had CT and MRI of head and results was negative. Next I had HiResCT and 4mm dehiscence was found on my left ear. cVEMP and oVEMP tests results were positive too for third window (dehiscence). Try to require HRCT and VEMP tests. Regards, Kamil

      Reply
  15. Jennifer Stickley ( Jenny)

    Hi Brad, I am so sorry to hear that.
    I did see the doctor in London on Monday and am having resurfacing transmastoid next month .I had a chat with Andrea last week as she had her second ear done and seems very happy with results. This gave me hope.
    Take care
    Jenny

    Reply
  16. Katie Guille

    Brad, I am following your blog. I was diagnosed in September of 2009 and had plugging surgery at the U of Minnesota in November 2009, which failed. Went to Dr. G in April 2011 for testing and he confirmed that I still have bilateral dehiscence. I chose to hold off on surgery until my symptoms got worse. I think its getting to that time now. Did you go to Dr. Lee and if so, what did they say? Would you recommend Dr. G? What are his thoughts on your 2nd side? Why did he think your hearing was lost? Anything he would have changed?

    Reply
    1. Brad Post author

      I don’t know all of the docs out there of course, but I was very impressed with Lee. I wish I’d gone to him for the surgery.He won’t operate on my second side since I lost hearing in my repaired ear.

      Reply
  17. Mary

    Hi Brad,

    Just found this blog tonight. I was diagnosed with SSCD a year ago, suffered for a year prior to diagnosis with a lot of guesses and such. I’m working with Dr. John Carey at Johns Hopkins as my surgeon and Dr. Judith White from the Cleveland Clinic as my otolaryngologist who is also trained as a surgeon, but no longer practices surgery. My treatment has included everything we can think of to try to avoid surgery, although I’m scheduled for surgery at the end of April as a last resort. I was wondering, what you call “cognitive rehabilitation?” I’ve been doing vestibular rehab for a year with a PT named Vince Whalen (who is a pt genius). Of course, my vertigo never resolves because there’s a hole in my head, but they rub my neck and try to loosen it up so my condition is tolerable. I don’t know exactly what you mean by the cognitive rehab and that interests me. Is it the same as vestibular rehab? Cognitively, I’m a hot mess at times, but at other times, I am still fine. It just depends on how rotten I feel. So, I’m very interested in whether or not I can control that aspect of SSCD.

    Sincerely, Mary

    Reply
    1. Brad Post author

      Cognitive rehab is done by psychologists. It’s targeted exercise for the brain to teach it to cope with and improve on its inefficiencies. I highly recommend it, though it can be frustrating and draining.

      Reply
  18. Tom Tag

    Hi Brad
    Thank you for this forum.
    I had sscd surgery approx. a year ago. My initial symptoms were improved however since my surgery I’ve had a worsening symptom of oscillopsia or a chronic sense of dizzines. It only occurs when I’m in motion such as in a car or doing my walk. For example I can’t focus on road signs when driving. Along with this is fatigue and related symtoms associated with trying to keep my balance. I’m very interested if anyone has had this post op problem.

    Reply
    1. Brad Post author

      I’m driving very well, though I try not to drive for many hours in a row. I do notice sometimes as a passenger I feel ill if I stare at my phone, but generally driving is okay. I do avoid any kind of amusement park ride though!

      Reply
  19. Jennifer Stickley ( Jenny)

    I am due surgery next week on my right ear and reading Tom’s note does not inspire me with confidence. How many others out there have suffered dizziness since having surgery?

    Reply
    1. Jennifer Stickley ( Jenny)

      Hi, just to say that my surgery in February went very well. When the surgeon was operating he found that there was no temporal bone, not just a hole as he first thought. He had to lift my brain and tucked the bony, glue mixture underneath to build a bridge Recovery was good as was the nursing care. Eight weeks later it is obviously better but due to such bad dehiscence in the left ear, it is still difficult to define how much better. I can only hear pulsatile tinnitus in the left ear now so that is proof that it has worked. If I am happy with it I will most certainly have the left done at a later date.

      Reply
  20. Kristin Gagnon

    Hi everyone
    After years of symptoms I was diagnosed in 2013. I had SCD surgery repair in August 2013 at Brigham and Women’s, Boston MA (Dr. Daniel Lee). I have done well but was wondering if anyone else has experienced new or increased anxiety after their surgical repair?
    Thanks
    Kristin

    Reply
    1. Brad Post author

      I think my anxiety went through the roof during the illness and diagnosis. My temper is shorter now than it was before. Trying to meditate some and do yoga when I can.

      Reply
  21. Jamie

    Thank You for sharing your story with the world! I have not been confirmed a diagnosis, but have been suffering with Fullness of ear, being Completely off balance, low frequency hearing loss, loud noise vibration issues. memory loss, extreme fatigue etc….you get the point, the list goes ON and ON and ON. I have seen a few ENT’s over the past 5 years, as a self pay patient with no insurance, I have quickly run out of money to continue on with any Dr. so my ability to become diagnosed is slim to none. It has gotten very bad now to the point where I see no hope, no light at the end of the tunnel. As I follow everyone else’s stories I am able to at least put myself on a timeline with symptoms. I am fairly certain this is the issue that has been ailing me for so long. At 35 yrs old now I am terrified as to how I will even function within the next 5 years as I now feel like my right ear is starting to follow suit with my left. So far there has been no vertigo, but objects that are supposed to be stationary seem to move or sway quite often. I am afraid of the day it does become full blown vertigo. With 3 kids and a husband counting on me I am so unclear of what the future holds. Pretty much lost right now. At least by reading these blogs I know someone out there knows the day to day struggle and I don’t feel so alone. I am so utterly tired of this.

    Congrats to all who have had success! I wish you all the best in your recoveries!

    Reply
    1. Brad Post author

      Jamie, thanks for reading and commenting. I believe there is hope, but all of the options are hard and risky. My recovery has taken forever. I’m now two years past the onset of my symptoms. I’m not always great, but I am better. There is a Facebook support group you can join if you search SCDS. I found that helpful.

      Reply
      1. Abbey

        Firstly, thank all of you for sharing your personal stories via social media. It’s an extraordinary thing to do considering buying not too long ago I would have had to make a run to the local library to research everything and to the local doctor to beg to be out in touch with others with same symptoms; etc.. Therefore, a heartfelt thank you to all of you.

        I am 39 and have been unemployed for over a year due to my symptoms. I have had my symptoms since I was roughly 16. I’ve been reading some stories online and I wonder now if the bad case of whooping cough that I had at age 16 caused my symptoms. In any case, today, I had a visit to a neuro-otorologist and he is suggesting peri lymph fistula or scds; therefore I am doing what most people do and scrambling online for data; hoping to find commonalities.
        If it helps, I have bilateral hearing loss (estimated 58 percent of my hearing is gone) and it decreases as time goes on. I’ve been dizzy for years and chalked it up to low blood sugar, too many Big Macs, not enough Big Macs, anything other than inner ear problems. Then I had an episode of dizziness/vertigo in my early twenties that lasted and lasted and was called anxiety by my Doctor and I was put on anti-anxiety medication (which I still take) (because this is stressful, right). Then I started noticing the dizziness never really went away, right before an anxiety attack I was dizzy so the dizziness was causing the anxiety, right?! Epiphany! Then, because I felt like it wasn’t ‘mental’ anymore, I ‘dealt’ with it until a year and a half ago when I quite simply…. Stopped. My concentration was gone, memory: gone, my voice started to sound different (which people close to be agreed with) I could hear my heartbeat in my brain, not all the time, enough though. I would rock back and forth to maintain equilibrium (something I’ve always done but more so now), cross my legs while standing in order to feel balanced, no longer had the concentration needed to hear my best, driving made me nauseous so I stopped driving anything over about twenty minutes. I’ve lost so much concentration that if I’m not lip reading, I would say I pretty much can’t comprehend 90 percent of what’s being said. My word recognition scores are below 20 percent. I’m exhausted from years of constantly ‘trying’ to appear normal: understanding people, walking in a straight line, bending over and coming back upright, moving too quickly, talking or laughing too loudly and making myself dizzy (haha who knew that could happen, right?), fear of falling, tripping, running into walls; all those dizzy/spinning/motion sickness feelings that make me anxious and induce panic attacks.

        I’ve adapted my life to my disabilities. I run when I can and walk several times a week to train my muscles. I dont drive more than about twenty minutes a day. I make myself drive my teen son to high school instead of taking the bus because, well, I still can. Some days I come home from that ten minutes each way high school drop off, climb into bed, set the alarm on my iPhone to 3pm and stare at the straight line where the walls meet until the dizziness passes or I fall asleep.

        Maybe I don’t have scds or anything else quite so cut and dry, maybe I have a few things- I don’t know and I think it’s ok that I seem to have some symptoms of a few different disorders, but not all because the great thing about science and about us, communicating and sharing, is that new possibilities and therefore new treatments are being thought of and put into practical use every day.

        I am in the middle of my ssd claim since I can’t work more than a few hours a week so I am going that route for the moment with hopes that there are better possibilities coming.

        Good luck to all of you. I’ve never done this before and so thank you for reading my very first post ever!

    2. Jennifer Stickley

      Hi Jamie. Like you, I have had symptoms for many years. You may have read my previous note post op which explains that I had surgery on my right ear. The surgeon has since done a hearing test and another VEMPS test, both results have pleased him immensely. My other ear has become worse and makes me tired and irritable but nothing I can’t cope with. I have had so much surgery this past 4 years and found this to be the easiest to recover from. The next ear will be done before the year is out. If you would like to chat more you can always email me separately.
      Good luck
      Jenny Stickley

      Reply
      1. Donna

        I am really glad to read your post and will hopefully make my decision this week easier thank you

      2. Kelly Stewart

        Hi Jenny what is your email address please? My mum is thinking of having this op done in London. We are from Guernsey. She is deaf in the other ear already so if the op goes wrong she could be completely deaf! Which surgeon did you use? Please email me Kellymallows@hotmail.com thanks

  22. Mike D

    Brad, thanks for sharing your story! I was diagnosed about 8 years ago. I started having problems after I had a bad infection. I was working in the health care industry at the time and caught some kind of virus. I thought I was going nuts! I went through PT, Vestibular rehab, etc., to no avail. Long story short, I had to diagnose myself and while I had a “thin-slice” CT, the radiologist didn’t catch the opening in my ear. Fortunately, I was persistent and educated him on SCDS. Sure enough, when we looked at the film together, he spotted the opening and apologized for his error.

    I somewhat scared of the craniotomy as I’m familiar with the risks of surgery and it doesn’t seem that the current methods are viable. I’ve learned to live with the fog, dizziness, autophony, etc. As a PT musician, I get discouraged with the crackling in my ear and other symptoms but just deal with it.

    I hope you continue to recover and to the others, I hope you all find relief!

    Regards,

    Mike D

    Reply
  23. Sarah Solly

    Hi all I am waiting to see my consultant for a diagnoses but I am fairly confident that I have SCDS. I have been able to hear my eyes move for quite a few years and have lots of other strange symptoms which have become worse in the last few months.
    I’m not sure that people believe me when I say that I sometimes feel that I just can’t function! I’m only 49 and some days I feel like I’m 89!

    Reply
    1. Brad Post author

      I know the feeling. This thing has aged me years beyond my 43. I’m having a pretty good recovery right now, and still I’m not 100%.

      Reply
    2. Jennifer Stickley

      Hi Sarah, I have literally just come out hospital today having had my second ear operated on.
      I found it difficult to define how good the first ear op was as the second was giving me so much sound in my head. The surgeon was pleased with results hearing-wise so I felt it must have worked.
      I will let you all know how I get on long term . I am just fortunate that my GP is very switched on and diagnosed me early
      If anyone would like to contact me my phone number is 01784450452 /UK that is
      Jenny

      Reply
      1. ramez sabra

        Jennifer, how can I text or call from the states? i assume 44 is the country code and then 017 is the area code?

  24. dennis

    Hey brad,
    Let’s start with why my English is not so good , I am Dutch.
    I just got one question, can scds get worse .i just got 40 and about a year ago I started to notice I can hear my eyes moving , i first thought it was my neck because my neck was always a bit stiff. Hard noises feels like pressure in my head . It’s bearable how I feel now , so that’s why I asked you the question, can it get worse or will it be stable.
    There’s no information on Dutch websites.

    Yours sincerely Dennis

    Reply
    1. Brad Post author

      I was told by my doctors that in most cases the symptoms do get worse. Everyone is different, but that’s what I was lead to believe.

      Reply
    2. John

      Hi Dennis, Just read through the whole thread above and just wanted to add a some information that may give hope to some. Before I comment I would like to thank Brad for starting this forum and raising awareness.
      In 2006 I too had strange sensations when straining and hearing loud noises, this peaked when a train guard blew his whistle next to me, next I knew I was being helped up from the floor. After a CT scan and receiving the diagnosis I was offered surgery by my consult who said he had only ever completed one operation prior. Although at the time I felt my world had ended I declined the surgery as seemed very risky at that time. At this point I would like to say I feel for those that have severe conditions, however I can say for my condition which seems minor in comparison some areas are manageable. I would even go as far as to say the brain has adjusted slightly to compensate? Although I still hear internal bodily noises I make sure where possible to avoid triggers and practice mindfullness therapy that help with keeping stress low , this seem to help the daily battle as stress brings on tinatus and fullness to the affected ear. My thoughts go out to all, and hope new breakthrough for treatment continue.
      Best regards John.

      Reply
    3. Cindy

      I’ve read that it can get worse without surgery. But at the same, many of us that have already had surgery are eventually becoming symptomactic again needing another surgery.

      Reply
  25. Joan

    Hi brad, I read everything you wrote-thank you! I was diagnosed this morning, after 2 years of feeling like crap. Do you think Dr. Lee is the best to do the surgery? Im starting to research doctors. Maybe one day I will be able to empty the dishwasher without having to sit down afterward….! Thanks for putting your story out there.
    Joan

    Reply
  26. dennis

    Hello,
    Does anyone know why ? When I move my eyes I don’t hear it in one of my ears but it seams like its in my neck , Does this mean my both of my ears are infected? In the Netherlands there is no information what so ever . So every sort of knowledge about ScDs is welcome

    Reply
  27. Jennifer Stickley

    Because the temporal bone is thinned, got holes in or totally gone as both mine were, the sounds from your body go straight to the brain leaving you fatigued with the extra work your brain has to deal with. My GP told me this.
    You will see that in September I had just had my 2nd ear operated on. It has not worked as I saw a CT scan yesterday at the London hospital where I had the surgery. The bone graft that was put in may have dislodged due to post op vomiting or it may not have been wide enough to cover the dehiscence.
    I have two options, one is to leave it alone and the other is to have the semi circular canals plugged. There is a 15% chance that I could become deaf. Thank goodness the 1st op went well. I am left with more head noise than before and it does get me down from time to time. I will say that the pressure in my head has gone and my balance is somewhat better.
    I have 2 months to make up my mind what to do and think I will probably learn to live with the symptoms as they are.

    Reply
    1. Abbey

      Hello,

      Do you have current hearing loss that progressively gets worse? Pwrsonally I am very fatigued and my concentration and memory are shot. I’ll be forty soon and am postponing surgery for as long as I can as I am over sixty percent deaf in both ears. Good luck to you.

      Reply
  28. Aleshea Mcintosh

    Hi, I enjoyed your blog brad. I’ve been ill for approx 6 months with severe vertigo (although currently well medicated) I’m 32 and in the UK so very much at the mercy of the Nhs! I’ve just today had my scan and waiting for the results. It’s a mixed bag for me, dizziness, poor balance, my pulse thumping in my ear (I didn’t realise this wasn’t normal!) certain noises make me dizzy or as you say it feels like my brain is bashing round my skull. But I don’t have any hearing loss if anything it is much more sensitive. My voice also sounds distorted like a bell pings at the end of my sentences (I just thought this was another version of tinnitus) and I don’t think I can hear my eyes! I’ve had limited balance testing- the epley manoeuvre and some goggles checking my eyes and ears are at the same speed and I’ve had vestibular physio for 6months with little improvement.
    Time to wait out the rest now, part of me desperately wants it to be SSCD just so it has a name and a potential cure. The other part is terrified!!

    Reply
  29. Alice

    My hubby is on a waiting list to cover his operation for this. We live in New Zealand and unfortunately our insurer won’t cover him since he had pre existing tinnitus. I am a kindergarten teacher and I noticed my partner constantly needing antibiotics for his nose, I felt this was treating the symptoms and not actually treating the source. So we booked in with an ear nose and throat specialist … As soon as the specialist heard my partner could hear his eyes moving it was the most likely diagnosis, the same day we found out I was expecting! After a decent wait we have it confirmed and you can see the “hole” on 8 of the CT scans so it’s a decent one. Being only 25 it seems worth it to get it fixed despite the risks. His symptoms are really quite bad and affect his mood significantly which has made it hard for him to be calm around myself and our baby. He’s not really drinking alcohol and he’s been told to not do physical activity since it raises his heart rate making his symptoms worse, he’s still working 12 hour days 6 days per week. Has anyone got any advice on managing the symptoms while we are on a waiting list? I try to let him sleep as much as I can, it’s been a struggle after I had an emergency c section and with a new baby. Also were people tired much afterwards? How was the recovery? Any advice? Oh and he’s worried about the surgery, do you have to be awake during it? Trying to keep it together and remain positive. Thank you for this feed 🙂

    Reply
    1. Brad Post author

      Hi there. Sorry to hear your partner is struggling. When my symptoms were bad pre-surgery, I took Valium which helped a lot. I still take it when my head refuses to behave. Also, betahistine and a diuretic really help with the pressure. Ice packs on the neck when it hurts, frequent massages, and this thing called cranialcacral therapy helped me too. Finally, going to a vestibular therapist until and after surgery kept me functioning. Many of my posts mention that. I wish you guys luck!

      Reply
      1. James Kronrod

        You mentioned that you had profound hearing loss after your surgery, other than that did the symptoms eventually improve. My CT confirmed SCDS in both ears (left worse than right) and I have an upcoming appointment to discuss the results with my doctor and what to do next. As far as I am concerned, the risk of hearing loss (in one ear) is acceptable if I can otherwise function normally. As it is now, my symptoms (cognitive and physical) are worsening with each week.

    2. cerebellarinsult

      It’s interesting that your partner had issues with his nose. I have had “non-allergic rhinitis” for a few years now. It is very bad and at times it is hard to breathe. Incidentally it started when my vestibular issues first developed. However, maybe it is just the stress

      Reply
    3. Christine Robinson

      Hi I live in New Plymouth NZ and have struggled with these symptoms having visited an ENT surgeon and Neurologist with CT scan and MRI tests I’m still unclear of the underlining cause. I wonder if you could advise which NZ surgeon was helpful.

      Reply
  30. Andrea

    Sorry you’re having a tough time. Good rest was key for me as the condition tires you out, and alcohol was a no no. Avoiding really noisy places, eg restaurants etc was very helpful too, as was not driving at night. Hang on in there!

    Reply
  31. Jenny Stickley

    Hi, considering I had absolutely no bone either side I got off lightly.
    It is a debilitating syndrome and those who don’t have it must find it quite hard to understand. My right ear op has worked but the left graft has shifted so may have more surgery to correct it. I have been told that there’s a 15 % chance of becoming deaf so am hesitating big time.

    I really hope that if your husband has surgery that he will benefit as I have, that the pressure gets better as mine has and the fatigue lessens too. I really wish him all the best.

    Jenny

    Reply
  32. ramez sabra

    I have the same exact symptoms. on both sides. did the VEMP test and temporal CT scan and my SSCD case is confirmed. my surgery is now scheduled for the right ear on June 27, 2016. The doctor who finally figured the problem out is good. however, he has the least patient caring of any doctor i have seen in the past.
    so my surgery is essentially to plug the holes. one ear at a time. however, how will that cure my dizziness? am I not losing the superior canal functionality altogether at that point. so my brain will not be getting any signals from the superior canals, how does it compensate for that?
    anyway, my doctor gets very pissed off every time i ask him this question!! literally. nevertheless, i am proceeding with this surgery because i can’t live with it’s symptoms any longer.
    did your dizziness improve after the surgery?

    Reply
  33. cerebellarinsult

    Thank you very much for the insightful blog. After many consults a neuro-tologist recently said I might have this disorder. I have been suspecting that I have either SCDS or a perilymph fistula for a while now.

    Interestingly I had a craniotomy for a cerebellar tumour about 3.5 years ago. Hopefully the initial surgery didn’t create the SCDS!

    Reply
  34. gillian

    I’ve just been diagnosed. With scds and unsure to have surgery my doctor as given me 6months to think about it at the moment I have all the symptoms apart from dizziness was wondering. If left will my symptoms. Get worst

    Reply
  35. Tony Bagdonis

    Hi Brad,
    It took two years and 6 months before my SSCD was finally diagnosed. My first major vertigo attack was on November 3, 2013. I went to dozens of ENTs, Neurologists, and physicians…even met with the head of Neurology at Emory University. Their diagnosis was always Vestibular Neuritis. The key to getting the problem resolved is getting a CORRECT diagnosis. I finally located a doctor in Louisanna that specialized only with inner ear an balance disorders. The SSCD diagnosis was made by Gr Gianoli at the Ear and Balance Institute in Covington, LA. He a is a great doctor and has performed over 400 SSCD surgeries, but he does not take insurance. The out of cost for this type of surgery is large. I have insurance and was not about to spend 25-35 thousand on surgery. Once I had a proper diagnosis, my goal was to search the internet for answers and identify other surgeons who would take insurance. There are several throughout the U.S., but what I found is each have their own surgical method and approach. The two that I’ve narrowed down is Dr. John Cary at John Hopkins Medicine, who is the Chief, Division of Otology, Neurotology and Skull Base Surgery and Professor of Otolaryngology – Head and Neck Surgery. Dr. Monir, the physician that first identified SSCD is/was from John Hopkins University. Dr. Carey has performed a number of SSCD surgeries with very good results. But I’ve decided to go with Dr. Gopen and Dr. Yang at UCLA. Dr. Gopen is Assistant Professor-In-Residence, Department of Head and Neck Surgery, David Geffen School of Medicine at UCLA and Dr. Yang is a neurosurgeon and pioneered a new, revolutionary SSCD surgical approach, which has received great results and reduced recovery times over traditional surgery approaches. In one of your responses you indicted to a person, find the best surgeon possible…well Dr. Gopen and Dr. Yang should be considered. I would recommend seeking them out if any of your readers are seeking help.

    Dr. Gianoli clearly identified the missing bone above my superior canal. Along with dizziness and imbalance issues, I suffer more with pressure type headaches on the left side of head, which is where the bone is missing, I do not have any autophony, but I do have a high sensitivity to noises, Tullio’s syndrome. This leads me to believe there is a hole in the canal, but Dr. Gianoli was not sure, because the CT only shows the missing bone and not the hole in the canal. I did have and MRI and MRV, but all came back without any abnormal issues. From what I’ve researched, Dr. Yang and Dr. Gopen have technology that can identify the hole(s), missing bone, and any other issues using 3D imaging along with GPS. They use the GPS functionality during the surgery, which you will see in several of their videos.

    I hoping to have the surgery in the coming months. My best wishes for healing to all you read this blog.

    Tony – Alpharetta, GA

    Reply
  36. Shannon Alleman

    Brad
    I had the SSCD surgery and I am now 9 wks post op. I have lost hearing in my right ear. I know you also lost hearing. I had a swooshing sound in my ear since I woke up from surgery and it has never gets me away. My balance is still off at times. Is this common to you as well? I just feel discouraged by doing the surgery. Thanks!

    Reply
  37. Kelvin Edmunds

    I’ve had SCDS for many years, and am now ready for surgery. Any updates on surgical results, would be very welcome. I’m in UK, and hoping for a bit of normality in my remaining years.
    It is a terrible condition

    Reply
  38. Kelvin Edmunds

    Good luck to everyone suffering this awful condition, I hope to have surgery later this year.
    Best regards
    Kelvin

    Reply
  39. Cassie

    Hi such great information on this page Thank you.
    My husband was diagnosed 3+ years ago and has declined a great deal over the last 12 months or so. This condition is affecting his daily life but soldiers on each day and has pretty much all the symptoms described plus a constant headache and lives on pain relief and also jaw pain. We live in Australia and have been advised against having the surgery as it is not very successful here. However i came across a You Tube webinar from Dr Isaac Yang from UCLA and he has a higher success rate with the technology he uses and it’s also less invasive. Over the last month i have been in contact with the Surgeons and with UCLA and have just come back to me today with an approximate guide line price and in Aussie dollars oh my goodness!!! I am prepared to sell our family home in order to have the money so we can fly to the States for the Surgery. Has anyone on this site had the Surgery from UCLA? Brad you have said that you are not symptom free due to the other ear. My husband also has a thinning in his other ear so i do worry that he will need the surgery on the other side eventually. For those that have had the surgery would you do it again / or recommend having it done?
    Are there any Aussie’s on here that have had the surgery ?
    Since having found Dr Yang and the option of having the surgery in the States my husband has a new lease on life and feels so hopeful.
    As this is a huge undertaking in selling our family home and travelling to the other side of the world any further advise would be appreciated.
    Cassie

    Reply
  40. Krissie S

    Hi Are you still on here Brad? How are you doing? I was just diagnosed after 7 months of mysteries and testing– now trying to determine if I want to move forward with the surgery….

    Reply
  41. Linda Rawley Moss

    I have just stumbled upon this blog which so interest me.I have had my first SCDS surgery in 2005 and have had several more since and am Now as 1 12 years ago symptomatic again to the point i am almost immobile. Living on meclizine.Has any one i this blog had surgeries fail for whatever reason and had to do over?
    Linda Rawley Moss

    Reply

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