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So it was one year ago this December that I found out.
I want to describe what it’s like. What it’s like to hear your own voice, amplified in your own head. Kind of like a bad monitor mix. Too much me. Like it’s time for a new sound guy. Pro-audio metaphors seem to work best.
Turns out, it’s not just neurosis, I actually AM “in my head too much.”
I actually DO have a kind of “hole in my head…”
More than 5 years ago, after getting over a monster cold – head stuffed up like it was going to explode, accompanied by all the usual symptoms, as well as my signature irritability (I now recognize that my irritability mostly CAUSES my ill health, not the other way around…but, I digress), I was left with that stuffed-head feeling. It was more like my left ear was still clogged, like it sometimes feels for a while after a plane flight, or after swimming. It was – well, irritating to say the least (hmmm…a permanent symptom).
I continued to have this feeling for years, saw several ENT specialists, was checked for earwax (none), tested for hearing loss (also none) and told “well, at least your ears are not ringing” (some comfort, but no relief). As I grew used to this clogged feeling, I realized there were other, less easy to describe sensations. I especially noticed these when singing. It sounded like my headphone monitors were out of whack; there was “too much me” in the mix. I could hear my voice in my head really loudly, and certain frequencies and tones created a sort of internal feedback, from a mild buzzing in my head to an extreme sort of jack-hammering and vibration against the inside of my skull, which may or may not be accompanied by dizziness. Performing certain vocal warm-ups while driving became almost dangerous.
My 2nd to last ENT (ear nose and throat Doc) was the most thorough up to that point, hearing out all my varied complaints and using a variety of low- and hi-tech diagnostic methods to check me for possible inner ear disturbances. He spun me around in circles blindfolded as if we were in a game of pin-the-tail-on-the-donkey, and then let me walk in a “straight” line as I veered off into the wall. He also strapped on the high-tech goggles and conducted videonystagmography, a series of tests to determine the cause of dizziness or balance disorders. All of this led to this medical conclusion – and I quote – “you may or may not have a problem in your inner ear, but either way, I cannot prevent your fate.” He actually repeated that line (in case my hearing WAS affected?) One of the most mystifying things I’d ever heard from a western medical doctor!
One day while scrolling through my Facebook news feed, I noticed a link shared by a fellow singer-songwriter (one that I am “friends” with on FB but actually have never met and don’t know at all – Tracy Grammer. Although I look forward to opening for her at The Uncommon Coffeehouse in Framingham this week, January 11 2013!) Her post was something like “This poor guy – I would hate this” and contained a link to an article describing the symptoms of something called “Superior Canal Dehiscence.” The condition caused, among other things, autophony (according to Wikipedia, “the unusually loud hearing of a person’s own voice, breathing or other self-generated sounds.” He could hear his eyeballs move, for instance. Well, doesn’t everybody?
Me, I also hear myself chewing. I have to cup my hand over my ear, old lady style, “eh?” when having conversation in a loud room or if I’m also eating. I hear my heart beat. When working out it can get pretty loud, and sometimes the whole scene in front of me jumps up down like a hand-held camera in documentary footage or reality TV.
I left a comment on the Facebook link, thankful for the help in finally identifying what was going on with me.
I’ve since read lots on this condition, but before I read this article on Facebook I had to wonder if I was going mad or if aliens had indeed surgically implanted something in my head. So I called the office of the doctor who performed surgery on my vocal nodules in 1998 (Dr. Steven Zeitels, who recently operated on pop superstar Adele). It was time for a no-nonsense recommendation for the best medical opinion I could find. I got a referral to Dr. Jennifer Smullen, an otologist at Mass Eye and Ear. I told her, I think I know what’s wrong with me and can we just skip straight to the CT-scan to confirm it? The first thing she did was strike a giant tuning fork and stick it on my forehead. “Where do you hear this?” I pointed to my left ear. “Well, that tells me a lot.” She did skip fairly quickly to the scan (a cone beam, to minimize exposure and just examine that narrow area. Which of course left me paranoid that maybe I DID have a brain tumor somewhere that the limited range of the scan would not pick up… but I’m not dead yet, so I guess I’m ok). When she came back with the results she said, “Congratulations – you’re a genius. You diagnosed yourself.” Proud of myself I then thought, ‘oh shit. Now what?’
It turns out the only way to correct this is surgery (read: cut into scalp, lift brain, plug or patch hole, set brain back down, sew up hole in scalp…) Oh yeah, and there is a 1 in 10 risk of total hearing loss in that ear. Wait, what? When I research SCDS online and read about others’ experiences, I am frankly shocked by how many people casually talk about their upcoming surgery, or their completed surgery, and in some cases, resulting hearing loss. “Well at least I have my life back.” One of them said. All in all, I definitely prefer the “too much me” and occasional “feedback” and dizziness to losing hearing in that ear altogether.
But there was a time of grieving my gradual loss of normal hearing and permanent change in audio perception. I felt like my singing and recording careers, while I was just resuming them, could never be the same again (well, of course they couldn’t – this just made it more so, in a more concrete physical way.)
I have been trying to “wrap my head around” what it means to me to perceive in this way; trying to explain the sensation of what it’s like in my head. There is a clever if lo-fi youtube video called “Inside Todd’s Head” that Dr. Smullen told me about that attempts to capture some of the sensations of this condition. FYI, his eyeballs scrape way louder than mine do, but the heart beat is realistic.
My diagnosis coincided with my 50th year, the release of my first CD in more than 11 years, as well as some family issues that brought my own life-long experience with anxiety into sharp focus. These echoes inside my own head seem like a fitting physical manifestation of my experience with aging, mortality, and my coming to grips with fear and anxiety. They also seem a sort of ritual drumbeat calling to remind me of some notion of “my purpose…” something to do with my eternal urge to create and express and share some of what it’s like “to be me.” What it’s like to be here, now. What it’s like in my head.
But now I want to know, what’s it like in yours?
Thank you for sharing your experience. I have been suffering for years from what my ear doc and I thought was menieres, fluctuating but progressive hearing loss in the right ear. But more and more I have these funky sensations – my voice being way too loud, ringing in my ear that crescendos dramatically when I touch my ear(even the other ear), or blink hard, or burp. Yeah, I thought everyone could hear themselves blink and the pounding of their feet on the ground when walking. Eating crunchy foods sounds like crushing rocks. The heartbeat in the ear comes and goes. Today in my hearing test when the sounds got real loud the painting on the wall moved. And I feel like I’m on a roller coaster very briefly when I hold my nose and clear my ears, especially on a plane. They’ll call me to schedule my CT scan tomorrow.
That’s interesting, Sue – I appreciate your comment. I know that some of these symptoms can occur with other conditions. The “paint moving” on the walls – great description 😉 I know, the “Tullio phenomenon” is what you’re describing, I believe. From Wikipedia: “Tullio phenomenon, sound-induced vertigo, dizziness, nausea or eye movement (nystagmus) was first described in 1929 by the Italian biologist Prof. Pietro Tullio. (1881–1941)[1][2] During his experiments on pigeons, Tullio discovered that by drilling tiny holes in the semicircular canals of his subjects, he could subsequently cause them balance problems when exposed to sound.” Poor pigeons!!
I wish you all the best with your Dr’s visit today. Keep me posted! I’m having a follow up in a few weeks, as my vertigo/dizziness symptoms have been on the rise.
bk
Well, like you, I had pretty much already figured out I had SSCD when I went back to my neurotologist for the results of my CT scan. Bilateral dehiscence but my symptoms are just on the left. With my longstanding Menieres on the right. I have gone back on a low salt diet and Lasix, and I don’t know why that would help both ears, but it has. Just got a second hearing aid for the conductive loss in the left ear. Doc was not enthusiastic about surgery at all, and I appreciate his candor.
I have a couple of musical questions for you. I am not a professional musician like you, I’m a physician, but I sing in the church choir and it is my hobby, my therapy, my worship, and it’s where my pals are. For a couple of years now, I have noticed that each ear hears a different pitch – almost a half step different. ARGH!! When my autophony is raging, I can’t hear the singers around me or the accompanist. Reeeeeally tough to blend voices. Plus, which pitch am I singing? And then if the organ is really loud – Easter Sunday was rough with all the brass – I get the mini roller coaster rides. How do you deal with autophony and dizziness when you sing?
It’s funny you should bring up the pitch issue – I was just talking about this the other day, wondering aloud to some folks whether or not my pitch seems less accurate because I sometimes feel it is… however, I mostly perform alone, only occasionally have someone join me on harmony vocals, but sometimes I perform with a local theater group (like now, we’re putting on Godspell!) and I feel a bit off, and when I listen back to rough recordings I make of our rehearsals I notice that I can be a bit off. Even if pitch is ok, it can be frustrating trying to blend as one should in a choir because I’m so loud to myself…
Luckily, I don’t notice too much dizziness (although I do get off balance a bit and can have a bit of trouble moving quickly if I’m attempting some dance moves – hah! – I need to learn to work that into the character I’m playing 😉
Are you on the SCDS forum?
bk
I love Godspell! Did it in college. I have gotten a hearing aid for my SCDS ear, and it helps. I signed up for the SCDS forum, but don’t think I ever heard back from them … Better check that out!
Barbara,
Thanks for posting this. I have been suffering from SCD for a couple of years now and just last month finally found a doctor that knew how to identify the issue. The most disappointing part was finding out there is no fix aside from surgery close to the brain. I was a professional opera singer for years and it’s so frustrating to sing now, but I still can’t justify the thought of surgery. I’ve been wondering if any kind of hearing aid would help in loud spaces or while singing. When I last performed I used a monitor to my left (bad ear) to balance out what I heard (another version of you cupping your hand to hear others). Please let me know if you learn of any new developments either in cures or in devices. Thanks!
Just read Sue’s comment on the hearing aid. Maybe I’ll give it a shot! Thanks again!
Thanks for your comment, Matt. I understand your frustration – and opera singing is so much more precise and challenging (an olympic sport compared to the kind of singing I do;)…article which mentions the “round window occlusion” procedure, which is less invasive than the usual kind of surgery (going thru skull).
I read this
Also, as I commented to Sue, do you know about the SCDS forum?
All the best! Keep in touch,
bk
(hyperlink not working… http://sharing.mayoclinic.org/discussion/unraveling-the-mystery-of-semicircular-canal-dehiscence-syndrome)
Barbara,
Thanks so much for your response, and singing is an art! Whether it’s Opera, Jazz, Rock, Pop, Classical or other! Your’s is just as “olympic” as mine! We just wouldn’t be competing against one another 🙂
Have you looked into “round window occlusion?” It sounds like “hope” to me, and I am going to see if I can get any more info from the Mayo Clinic. That surgery sounds much less invasive and eliminates the possibility of total hearing loss on that side. Thanks for pointing out that article!!!
Matt
re: Olympics comparison -Good point, Matt!
Re: round window occlusion, nope – have not gone there yet. please let me know what you find out, and all the best! I have been experiencing a bit more dizziness, so if that continues I will have to consider pursuing some sort of remedy 🙁 But mostly, all is well. wishing you the same!
Thanks Baraba! Will do!
Matt
Hi, everyone! Interesting that I stumbled upon this today. I am having a really “down” day.
I started experiencing severe vertigo about 2 weeks ago. I was feeling nauseous several times a day, insomnia from Hell at night. fatigue, dizziness, and headaches all day. I regularly have the “whooshing” sensation, light sensitivity, and low tolerance for loud noises – especially sudden, unexpected sounds.
Went to the primary care doctor, she gave me Antivert. I waited another 3 days (a total of 10 days since the vertigo started), called her and told her I didn’t feel any better. She sent me to an ENT/balance specialist. After describing all my symptoms and some things that had happened to me over the past 6 months, he made a preliminary diagnosis of SCD. I now have to get the CT scan and 2 other tests done.
In the meantime, I am so depressed and upset by how I’m feeling. As someone who also has MS, spondylolisthesis, permanent nerve damage, diabetes, etc – finding out about the possibility that I have SCD is almost too much.
I hope you all have great success in getting relief for your symptoms. Reading about other people’s experiences does make my situation a bit easier to cope with…
Hello – I am so sorry to hear of your “down” day, and all your troubling symptoms of possible SCD on top of your other issues. It does sound like your medical team is on top of it, however! It took me years to get to the bottom of this (and as my post described, it was thanks to Facebook that it finally got figured out!)
I have been having more dizziness and weird sensations, especially in certain acoustical environments (went out to lunch yesterday with a group of very vivacious and talkative friends and the volume and frequency of all their voices combined literally made my head spin! then took a group of 11 year old girls to a haunted house last night and my ears are practically still ringing;-)
Thanks for sharing – I agree, reading about others does lighten the situation. Keep us posted on your findings. Did you check out the SCDS forum?
All the best,
bk
Thank you so much for this information. Recently, in the last 6 months, I have been experiencing these same symptoms. Thinking it was an ear infection, I took decongestants to dry up what my doctors assumed was “fluid in my inner ear canal” without ever having examined my ear. When they finally took a full examination, they were at a loss as well, and told me, “You’re not going deaf. That’s all I can say”.
I sing amateurly, at parties, events, karaoke, etc, not for any career purposes, but for fun. This is when my hearing became a major problem. I especially like to bust out the higher pitched sounds while driving, and it sounded exactly as you put it “too much me” to the point of hearing static crackling. Here are some of my symptoms: I hear my own heartbeat. Eating cereal is a nightmare. I could always hear my own eyelids when I blink, but thought this was normal. I can hear wind rushing when I am irritated or stressed. Doctor said this is probably the sound of blood rushing to my brain. I’ve yet to experience dizziness due to it, but I do experience vertigo when riding a bike, jet ski, ATVing, etc.
The only thing I can do to staunch the noise in my left ear is to put an ear plug.
Side note: Certain frequencies affect my hearing so much that I am in pain and start to develop a throbbing headache as well as nausea. This is especially true at concerts or events where a loudspeaker is used. So I carry my ear-buds wherever I go.
I wish you the best, and thank you for sharing this with us. I now have better information on what to ask my doctors on my next visit.
Hi,
I was diagnosed with SCDS about 2 and a half years ago.
Because I sing and talk a hell of an amount I absolutely had to get a fix.
I had a superior canal obliteration the operation went well it took about a year for my balance to settle and for my hearing to normalize I have slight hearing loss in that ear but it has completely changed my life! Sooooooo worthwhile getting it done.
The advantage of this operation is that there is no moving brains!!
I hope this is something you could consider, I can’t tell how pleased I am with how much more normally I perceive the world!
HI Jacqueline, I am so glad that this post found its way to you and was helpful. Thanks for writing, and sharing your experience. Sorry to hear – it is so interesting the similarities, but also the differences in how this condition affects us. Great help from the Dr. huh: “all I can say is you’re not going deaf…”!!?
Good luck with future Dr.s visits, and getting some relief. Still looking into that myself:)
bk
Hi,
I love that you describe yourself as talking “a hell of an amount!” Interesting: so glad you found relief, and I thank you for writing and for sharing the info about “superior canal obliteration.” I will look into that. It sounds like the hearing loss is no great matter compared to the SCDS symptoms you were experiencing. I have had a busy couple years, having put out an album and then adding a bunch more gigs to my schedule, but I think I will have a bit of a slower year coming up, so maybe now is a time to take some action and “get a fix” as you put it!
Thanks again for getting in touch,
bk
Interesting to hear of everyone’s experiences with SCDS! I diagnosed myself around 6 years ago after battling a severe infection in my left ear (I worked in health care at the time). I’ve been reluctant to have a craniotomy and am looking into the round window occlusion procedure. It is frustrating because people don’t understand how difficult it is to live with this. I’m a musician and I’ve reduced my singing because I believe my pitch is erratic. My guitar playing is ok as long as it’s not too loud! I’m hoping to find a Doctor in the Western NY area who is competent with this.
thanks for sharing, Mike – I know, it is impossible to explain the effects of living with this. Being told I’m too quiet when I feel I’m shouting, having to pause chewing in order to hear what someone is saying to me… and the fear that our pitch or other natural musical senses are being compromised. Have you recorded yourself singing? I bet your pitch is not as erratic as you suspect. And you might be able to determine the “latency” effect of what you hear v. how you sound and adjust accordingly! Best of luck, and please let me know what you find out about the round window occlusion procedure if you find a good doc. Hope you find a good local doc referral.
bk
Join the Facebook support groups SCDS Support and Superior Canal Dehiscence Syndrome Support. I have learnt so much about my condition from there.
Thanks for your article and other posts. I now know that for me, SCDS started in 2009 when the fullness in my L ear and ‘hearing’ myself began. In 2013 I started to get other symptoms and went to see a ENT. CT scan confirmed the diagnosis. Apart from the fullness and autophony the thing that really started to bother me in 2013 is a type of dizziness that I find hard to describe. I guess it’s like being in a high speed lift. It sort of spread over me in a wave – weird! Anyhow, I now take 1 stemetil/day and I find it really helps re the dizziness. I did initially join the Facebook forum but thinking about the condition seems to make it worse – I try and ignore it. I now think that my R ear is affected as both ears feel full: I seem to spend quite a bit of my day trying to equalise pressure. I agree with the comments about the ease that people approach surgery. I think my condition would have to get quite a bit worse to go down that path. I figure if I wait along enough there will be some wonderful surgical technique – maybe growing back bone cells! – that will come along. best, Jan
Jan thanks so much for your comment. I appreciate you sharing what works. I have a follow up appt at Mass Eye and Ear with a new doc at the end of August (my original Dr. left; her replacement is on maternity leave – so will get another opinion, perhaps…) I will ask them about “stemetil.” Thanks!
The dizziness has kicked in more for me too, and yes, it’s hard to describe! I always explain it this way: I feel like a cartoon character looks after being hit on the head with a blunt object or maybe an anvil dropped on the head! Like my head has stars/’ around it or it’s sort of shaking back and forth… Not like a spinning-room sort of dizzy. Often I will get off balance and slam into a wall when I get up and start to move quickly.I like the way you describe it, as a wave spreading over.
So sorry you are having R side sx now too:(
I agree; my husband and I are always imagining the medical procedures they will have one day! I also thought I should try visualizing the bone growing back/in there. There is good research supporting certain physcial changes that can come about through cognitive approaches (thinking of Ellen Langer’s work…) I better get on that!
Keep me posted.
Be well, and thanks again for sharing.
Thanks, Jenny – I did join. I agree with Jan that I have to limit how much I read there – it doesn’t always help. There is a musician who made a song/video about his experience (I found the link to the video on the SCDS FB page) and I am interested in getting in touch with him…
Thanks for your comment!
Pingback: Post Surgery: SCDS be gone! Well, hopefully | Barbara Kessler
10 years ago, I sat in a classroom and felt some hit me in my brain and my life completely changed. 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 keeps moving, floating and locks in two seconds later. 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 normal,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 whom 10 years ago was the brightest in class with only A’s, but now is stuck in bed cannot read and write and focus. 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 frozen.
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, I feel like my eye ball is moving 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 Pain in my spinal cord and cannot walk long distance, stomach, chest pain and under my ribs, neck pain and difficult to bend and pick things, short breath, stomach cramp, stiffed joints
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.
My email is anomoses@gmail.com.
Thanks in advance
Moses
BKPOWER – this just knocked me out how well written it is, what you’ve been through, and the things we have shared and not shared over the years. ILY xo
I am an SSCD sufferer now for 24 months. I was diagnosed of SSCD on the 8th month from onset of this vestibualr disorder after seeing a neurologist and an otolaryngologist. Undergoing the Epley Omniax chair rotation and vestibular therapy did not work. I did my own study and research of what is SSCD and based on my own health profile and the factors involved in undergoing a procedure and/or a surgery, I had decided to “live with it” because I did not want my brain touched. My tinnitus had been with me for 24 years, got used to it and became louder since onset of SSCD. My 1/3 hearing loss diagnosed 7 years ago is amplified with more hearing difficulties but I can still hear.
And so, I am taking charge in managing my SSCD, a life-altering health ailment. I can no longer do what I used to be doing; I can no longer enjoy being with crowds; I can not enplane to join my family gatherings for awhile. I am in quietude and solitude. Going outdoors is limited only to art teaching, errands and, medical/dental/vision appointments as my driving is also affected. I should be not higher than my surroundings or else, oscillopsia episodes attack that compel me to lie in bed for several hours until equilibrium returns.
In other words, I am living with my SSCD and I know as I age, it may become worse.
perhaps another thing we share Zig – not checking our messages? oops just saw this! Thanks for reading and reaching out. Think of you often. Maybe we can catch up sometime:)
Oh Alma, I wish you well and totally understand your decision to “live with it.” I feel for you as I can relate to much of what you describe in terms of the effects on your daily life. Thank goodness for art and quietude and solitude but hope you can find balance and some peace as you venture further out and hopefully return to some more socializing or traveling. Thanks so much for reading my post and for commenting. – bk
Wow reading all this makes me realize I am not alone. Had all the test done last year, doc’s surprised I am not in a wheelchair and hear quite well. They figured I was born with the sscd and have vertigo to go with it. The doctor said my eyes are what keep me stable until a attack, takes me down. Still learning to live with it at 52. I was told about the surgery but will hold off until I can’t manage anymore, I have kept an eye on all my 4 kids for signs.
Wish you all well. JR
Oh man, Jr – vertigo is so difficult to deal with. I’m lucky I’ve only had a few experiences with it. My “dizziness” was of a different sort. I don’t miss walking into walls all the time!! take good care, and wish you well, too. bk
smooches, ZIG. Please let’s do catch up soon 🙂 xo bk
Hi Alma, thanks for your comment and I am so sorry to hear about your troubles with SSCD – although I am impressed you figured it out so quickly! There was so much less info out there when my symptoms started.
Just a note – the surgery is not “brain surgery” as some suggest. There is a very brief and delicate lifting of the brain in the Middle Fossa (MF) approach to the surgery (which I had) to clear the way to the dehiscence so the repair can be made. Not sure that will be much comfort, but I wanted to point that out just so you can fully and accurately weigh all the costs and benefits of surgery. All the best and take good care. bk
This blog was my first exposure to SSCD. I had no idea what was wrong with me. I had been to a few inner ear specialists and was told it might be psychological, or maybe Meniere’s Disease and I could ‘try’ a diuretic. I am also a (ex) musician, classically trained trumpet player with a bachelors degree in music. SSCD has prevented me from playing. I will literally fall to the floor if I try to play.
Having a name to research has been a big help. About 6 months after finding this blog, I have now been diagnosed with bilateral SSCD and bilateral PET (patulous eustachian tubes). I found facebook support groups for both SSCD and PET and did a lot of reading. I found my doctor, Dr. Marc Dean, by doing research on these groups. He is located in Fort Worth Texas. After my diagnosis, he feels strongly that the Round Window Plugging is my best option. He personally has done over 100 of these surgeries on SCD patients with positive results. I’m scheduled for this surgery on January 17th, 2017 (in less than 2 weeks)
I’m just very confused. The more research I do, the more I feel less confident I should go through with this surgery. Dr. John Carey from John Hopkins is one of the leading SCD neurotologists. He doesn’t believe that Round Window Occlusion (plugging) can physiologically work. Yet my doctor has had good results with his patients. I’m just more worried about getting new symptoms after a surgery. I don’t currently struggle with Vertigo or dizziness problems. My dizziness problems are a result of tuillo (the sound of my own voice or trumpet causes dizziness and involuntary eye movements) I know with some of the more invasive surgery options it is inevitable that I will get balance/vertigo problems as a result of the surgery and will require vestibular therapy to learn how to walk again.
I was actually in tears earlier today trying to sort all this out. I might just opt to wait and not have surgery until my symptoms become so bad I can’t function.
I post this here because if anyone is interested in learning more about the Round Window Plugging (less invasive surgery for SCD) you might look at Dr. Marc Dean. If anyone has had this surgery with either positive or negative outcomes, please post your experience. Please.
I have suffered from SSCD for years and years. I realized something was amiss when I found out people do not normally hear their eyes blink, or feel dizzy during loud bass noises. I can’t hear thunder, either, unless it is practically on top of the house. I am 60 years old and have lived with this condition for at least 20 years. It has not been diagnosed except by ENT doctors that assume that is the problem. No CT scan, as of yet. Riding horses was a favorite thing to do, but is very dangerous for me now, due to the vertigo. One side-step by the horse, and I am on the ground. Another real problem is music. I taught piano for 30 years, teaching choral singing along the way, also. Now, trying to sing the “correct” way nearly puts me on the floor. I am fixing to direct another choir and am totally unable to demonstrate singing techniques due to the fact I can’t hear my own pitch correctly. When I sing, there is no hearing the piano, or other voices. Quite frustrating. I was hoping to get some ideas from your readers, and blog. It looks like we all are having to just deal with it. Unless the vertigo gets beyond toleration, I will not be having surgery. To my knowledge, it is both ears that are affected. I have ordered a voice recorder to record my singing to see if I am on pitch. Maybe by working with that, I will be able to tell when I am singing right. Choir work is impossible now. I can only accompany on the piano, and direct. No singing with them, unfortunately. I miss it.
I have recently been diagnosed with this condition from a CT scan. I was originally told the CT scan was clear but having another doctor look at other slices of the same scan it became apparent that this was the cause of unexplained further hearing loss on my right side. I have no autophony or balance problems so am lucky in that respect. I do get a sensation of a squeezing pressure behind my upper right ear which hurts when moving a lot. Anyone else get this pressure feeling behind their ears?
Have superior canal dehiscence with tegmen defects. My problems are mainly audiological- (deafness). Can anyone enlighten me… can you actually be ‘off balance’ without being aware of it with SCD, as I’ve had a few falls but don’t actually experience spinning sensations at all? Could I be off balance without knowing it, are there any tests for this?
Rachel I am so sorry to hear this – I can totally relate. I hope you can ride – and sing – again, and find some relief.