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I'm on day 4. Transmastoid on right ear. Vertigo and nausea is crazy. I was questioning my decision so your videos were helpful and I will rewatch to get me through this recovery.

If u r still active or seeing comments.....how you are now....i have been recently diagonosed.....im lot of trouble....please suggest me how you managed it and how you are post operation....

Thank you for sharing your story. I have been diagnosed with SCDS and have an appointment with Dr. Jacques Herzog in Saint Louis

"a bowl on your head and a kazoo in your mouth" is exactly it!!!

Had mine show up on CT scan and clinically. Next appointment they will do the VEMP testing.

Hey 👋 I’ve been watching some of your videos as I’m pretty sure I suffer from this condition. It’s been about 10 years with doctors not knowing what my issue is and I’ve come across this syndrome and I’m so sure this is what I’m dealing with. I’m very eager to get diagnosed and get it taken care of because it’s quite frankly ruining my life. I appreciate your videos as it’s helping me gather information! Hope everything worked out perfectly for you and you are living the life you are supposed to be living!!

4 kids congrats!!!

I didn't even know this was a thing until I found an obscure comment on a Starlings Mimicry Short where somebody claimed they can see sound because the waves would seep into their retina or smth. So I went to google to find the name of this syndrome and then looked for videos explaining it. I think you gave a great picture on how it must be to live with this. And if I ever get the syndrome I know what I am looking for. Cheers. I hope you are doing better now 2 years later.

Update we just figured out that what I do have is the same issue that you had SCDS. I have it on my right side. It is very thin bone. I will be having surgery in December to plug the hole and also to get my cochlear implant. I’m really excited I’ve been having these symptoms for the last 3 1/2 years.

thanks for the info. i think i have PET and the symptoms are similar to SCDS. i'm trying to figure out what to try for treatment before going to an ENT. i can't breathe through my nose or i hear the breathing loudly after a few breaths. i can't really communicate with people without being really distracted and annoyed. i know what you mean about wanting to be alone and not speak. it sounds like i'm underwater when i speak half the time. when i feel a need to describe it to other people i just call it autophony because that's the actual effect of the problem. i'ts better than going into a detailed description when i have trouble speaking. i know what you mean about not hearing anything being better than hearing the loud sound when breathing or speaking. my symptoms are almost exactly the same as yours so it may be SCDS.

I’m glad that everything turned out fine. It’s amazing that others were dealing with this way before I did. I’ve been dealing with this for the last three years. I finally just got diagnosed today. I’m excited to finally fix this hole and get along my journey in my life, this syndrome has made my life feel not real, and every moment has just been dealing with dizziness.

I’m dizzy all the time cause of it 😞

I'm meeting my surgeons Monday, I am honestly nervous. Where do they make incisions? What was pain level post surgery,

I've just come across this condition and realised I probably have it. I've had it most likely since birth or very early childhood, so it's bizarre to me that the symptoms aren't normal for most people. I've always been able to hear my eyes, my heartbeat, and have always been sensitive to loud noises. I just thought everyone had that! It's finally explaining my symptoms of fatigue and brain fog, and my intermittent tinnitus. How strange that little holes in our ears can cause so much havoc for us.

This has taken over my life. I just decided to have the surgery after going back and forth about it for 3 years. Because I was so scared of all the things that could go wrong. When my doctor asked me what had made me decide to have the surgery. I told him this has taken my life away from me. You might as well put me in a jail cell. That's how I feel at home. Never feel good. Never want to talk to anyone because of the echo. And so on & on & on & on & on. I have it on both sides. We're doing the left side first because that's the really bad side. Surgery is in August. I feel so bad for anyone who has to live with this. I know how scary it is to choose to just monitor your situation or have the surgery. It's not an easy call to make. I changed my mind 3 times before this. I'm just sick of this taking over my life. And I pray 🙏 that everything goes well.

Thank you for the video, it gives me hope for a good recovery. Three days postop today, and its really dizzy 😵‍💫

It never went away unfortunately. I live with tinnitus since the surgery 24/7 and doctors tell me it will never go away. But every case is different, so I hope yours will go away soon

Just got my CT scan results. One ear has Dehisance. I have had symptoms since a 1980s head injury in the Army. It began as whooshing, pulsatile tinnitus, high pitch hissing in my ears. Symptoms becamw worse over time - nausea, vertigo.

Thanks for sharing, please share with me where and who did you go to. I am suffering for 6 years, but my surgery in Nov will be redone. Please share with me any info re your surgeon, maybe I can go to that physician. Thank you

My daughter just got diagnosed. Surgery seems probable. Is there an any update now?

When mine first started, I would be lying in bed thinking I was hearing someone bouncing a basketball outside. It took a long time before I realized it was my heartbeat. My symptoms are getting progressively worse. I hear my footsteps. Chewing makes me nauseated. Now when my dog barks in the house, it feels like an electric zap straight to my brain and my eyes water. It's so disorienting!

Hi mindy how you feeling now hope you are doing well 🎉

Mindy, how are you now? after this years?

Bless you for doing this Mindy. I have recently been diagnosed with SCDS but my symtoms are only balance and hearing my eye movement. I'm contemplating surgery but I'm 65 and take Oxycodone for my back. Believe it or not it stops the SCDS. I hate the drug but I can control the SCDS without surgery so that's where I'm at. If I do not take the meds for back pain the SCDC causes me to feel like my head is a balloon - I thought I was going insane! Plus the noise when my eyes move! For those of you out there who feel like your next move will be to an ansylem - I've been there...feeling like I'm losing touch with reality. It's very frightening! Plus, It's very hard to find good doctors for this. Very frustrating. I hope you keep doing these helpful videos Mindy and best wishes on healing well.

Hi Mindy, I was diagnosed with SSCD around 5 years after a period of severe dizziness, nausea, headaches, balance problems, hearing eye movement and other bodily sounds, slight deafness, and a blocked sensation and pulsatile tinnitis in my right ear to name a few. Motion sickness and hearing bodily sounds have always existed for me. I believe the pressure from using a CPAP machine for sleep apnoea produced more severe symptoms, and that is why I sought help. I thought I was going nuts. Most medical professionals here in Australia have never heard of it. Luckily I found a great ENT specialist that believed me. As to surgery, I don’t think there are many confident surgeons here who would help. Most days my symptoms are mild and I am learning to deal with it. But sometimes.... Thank you for putting your story out there. I'm glad you are much better after surgery. Liz

Hi , how are you feeling after one year since your surgery ?

Years of being told I just had tmj or disregarded altogether.. until my vision started to distort with loud noise and the ENT I saw recognized the condition and sent me for further testing. I will have surgery in February 2024 to help correct the right side. SOOO hard to explain to others that it's not just having vertigo.

I have never been able to describe the sound . . . You described it as a kazoo, and that is exactly it! Thank you for sharing your journey.

Hey Mindy. I’m so glad I found your testimony about this. I had the same operation 5 days ago. Did you also have tinnitus after the surgery and for how long, if you can remember?

Magnesium Malate, Vitamin B2 and Melatonin seemed to have helped me a bit - along with an anti-migraine diet. I have thinning of the ear bone. And was having vertigo attacks almost everyday.- until it was recommended that I try this.

I am scheduled to get surgery next month. I want to be able to have conversations again without the pain and frustration and I want to be able to run and ride my bike without the elephant walking sound in my ear every step. I’m worried that the sound will improve but my balance will get worse because of some of the videos I’ve watched. Did your balance improve, stay the same, or get worse?

Did you lose hearing acuity? I have quite loud tinnitus and about 70% hearing loss and am facing the possibility of this surgery.

Had left ear operated on 13 years ago, had to go from CO to Louisiana after 5 years of docs not helping. 2.5 hours and 5 years of symptoms gone. Bent over 6 days ago and came up dizzy (no vertigo but didn’t have that last time either) but am so much more unbalanced this time, mostly lying down.

I'm on my 8th doctor, and finally think we have a diagnosis, just waiting for the CT. Did you interview multiple doctors? Did he decide which version of the surgery to do or did you have input? I'm located north of SLC, so thank you for sharing your story!

Le Dr Gaétan Fradet, Orl, et le Dr Martin Côté, neurochirurgien, font cette chirurgie vs la déhiscence du canal vestibulaire et ils ont d'excellent résultas. Ils pratiquent dans la ville de Québec. Bon courage!

Hello My mame is Martin and l have the same problem semicircular dehiciencie of the canal semisircular superior and lm whit You because l have anexayte depresión and pánic atack and l have to find help because all this síntoms is horrible live whit that because this problem Make all that and l talk whit My doctora (psiquiatra) and l explain My problem and she prescribe me antidepresivs for all thah and she telg me this is goin to help You ti when You have the surgery l live in Houston and l hope this year have My surgery lm waitin on My next ct cascan on Augusto 31 23 and after that l thing lm ready for the surgery thanks for share all this lm enderstend You because l have the same problem thanks and good bles You annd You family *this is wear problem change Your live for completo and somethimes You thing lm getting crasy but is not this problem Make alot diferent crasy síntoms like My doctor teld me thanks and good bles You " sorry My inglés is no perfecto"😊😊😊

Hello how are you now?

Were there restrictions on flying commercially either pre-surgery or post-surgery? I would imagine the mastoidectomy aspect of the surgery changes your interpretation of sound? Hopefully not.

Thank you so much. I don't know if you have it on both sides, but I do. I've been torturing myself over this thing for a long time. I do want to get it done. I just need to get through the process, I guess.

How do you feel now after surgery? Do you have any kind of hearing loss?

thank you ! Very accurate description

Hi. Did you have vertigo and extreme dizziness after the surgery. I am 3 days post op and the vertigo is insane.

Where did you have this surgery?

Hi Mindy and thank you for your videos. I think I’ve watched all of them and yes, I have bilateral SCDS. Had transmastoid superior canal tube plugging surgery 2 weeks ago in Denver. Took me over 5 years to find doctors who could diagnose my problems. Finally. About the cause of SCDS - my understanding is a bit different - and anyone please correct me if you think I’m wrong here. The initial cause is due to a small hole in the temporal bone (side of the skull that last to form as an infant and is naturally thin) the hole is called a dehiscence. The hole - if right next to the superior canal of the vestibular system - opens a pathway ( called a third window ) - for good sound to escape out of the cochlea through the superior canal and be lost into the brain matter - and for “bad sound” to enter into the vestibular canal from outside and be processed by the cochlea. Good sounds lost causing hearing distortion - bad sounds gained giving those bad symptoms of hyperacusis, autophany, fullness and probably more. There is not a hole in the superior canal. I am not a doctor so I’m sure some of this is incorrect, but I think the concept is correct. Thanks again for your videos. I don’t Facebook and RUclips has been my main source of info. Brent

To Mindy and Sebut - I also have been diagnosed with bilateral SCDS. Had first surgery on right side 2 weeks ago (transmastoid superior canal plugging). Balance issues are receding nicely (went on 3 mile walk today) but still have vestibular issues to wade through(unsteady eyesight while walking). My right side still feels really plugged up and I can’t hear much at all from the right ear. Surgeon says this plugged up sensation will slowly dissipate as fluid from surgery will drain through the Eustachian tube. I’m really hoping for this to happen. Since the right side surgery, the left side has been acting up and really become a problem. The problem symptom is sound sensitivity - hyperacusis. The kitchen seems like a mine field to me. Sudden hard sounds - not even very loud ones - rock me the core of my brain. So - this looks like a waiting game for me. How long till recovery from the first surgery reveals what level of success I have on the right side? Then when to decide on a second surgery for the left side. At age 72, and being a passionate musician for 60 of those years, my dream is to get past this as soon as probable and get back in the saddle for my last chapter in life. God I hope so. Also need to be mentally prepared for less than optimal results. Your postings have been very helpful to me. Thank you for those. Any thoughts? Feel free to chime in. Best wishes to all fellow SCDS sufferers. Brent

I can hear my eyes move in my head and I can hear myself blink. As a child (I'm 40 now) I was often kept awake at night from the sound of blood rushing in my own ears, although I haven't had that routinely as an adult. I am getting sensitive to sounds as I get older. I constantly have to ask my husband to turn down the TV and I notice that I don't play my music as loud and sometimes I turn it off because I just can't handle it. Sounds like my symptoms are pretty mild compared to yours. Thank you so much for sharing!

How long was your recovery from surgery?

Having TM surgery with plugging superior canal in 2 days. Fingers crossed. I’m a very active musician and the SCD has turned that world upside down. Took 5 years to find a group of ear specialists who could diagnose my problems. I had pretty much given up. Hopefully this procedure will give me a renewed opportunity to be myself again.

Did you ever feel like you didn’t wanna get up to eat and that made you feel even weaker ?

Thanks Mindy, I have a decision making appt with the surgeon in a couple of days.