Thank you Todd. I've been living with this since 2005 and nobody could understand what I meant and I quit telling my doctors. Isolation is the only way to cope most of the time. I have been finally diagnosed with SCDS this week and I have been given tremendous hope to function like a normal human being again. I have decided to have the surgery to improve my life. Thank you again for your video.
Wow, thank you for this video. I live in the Boston area and go to Mass Eye and Ear and I thought they had this great reputation... but They have never told me about this, I just happened to see in in my records last night, as I prepare for a Cochlear Implant surgery in 2 weeks. It was on my CT scan from almost 3 years ago! This is answering SO many questions for me! I've never said out loud that I can "hear my eyes move" because well all these internal sounds I thought everyone heard. I am having vestibular Physical therapy for my bad balance and I bet this will be good information for my PT as well. Thanks again for your very informative video!!
I suffer with this problem since June 2010 , just woke up my world the way your video demonstrates . My problem is in the left ear . I am Brazilian and here 99% of the doctor does not know this problem , including some I sent seek psychiatric help when I explained the problem. Finally found in a near my city, a doctor who did his PhD in Los Angeles and will make the surgery on me. Thanks for your video , I suffered many years without knowing that I had and your video helped me .
I'm glad it was helpful. Just two and a half weeks ago I had my third surgery related to this. You can read all the details on my blog site toddbradley.com or on the SCDSsupport.com web forum.
Hi Todd, I never would have guessed the supreme ruler had this kind of affliction. That's one creative and courageous way to show what's it's like. The music at the beginning keeps it light and a bit detached. Thanks Todd. (O.)
I'm 70 and all my life, if I mentioned the symptoms people would look at me as if I was a bit nuts, so I stopped saying anything. Then a couple of years ago I mentioned it and immediate he says what it is. I was amazed, and now at least I know the reason.
Hi Todd, I too, had this condition and also the surgery. I am happy to say that despite the risk factors explained prior to surgery all went very well. You have come as close as anyone can to describe how it feels to have this. I was approached by an audio professional to do a 5 minute piece on this condition. Look it up, it's called, "the trouble with Rick". Thanks for your video.
I was diagnosed a year ago. No one could figure out what was going on with me, and I thought I was going to go crazy; my ENT asked if I could hear my eyeballs move. I said, 'yes, can't every one hear that?' He told me that people don't ordinarily hear sounds in their bodies like their neck moving, swallowing click, gulches, heart beat,. I also have mesophonia, which is a little different, but still to do with my hearing. I'd love to talk with you more, particularly about surgery.
When I first saw this I almost cried. Thank you so much for capturing my daily experience so well!! I too have this disorder and try to explain to my friends and family what I experience and why I am so very quiet. Your video has gone further to illustrate the challenges that I and others now experience as "normal". Thank you so very much!!
Dont accept this as normal. If you havent already, find the nearest doctor to you that can fix it and start getting things taken care of. If you are anything like me it will get very bad very fast, waiting will only hurt you.
@@twitchyql7020 The surgery to fix this means working in the cavity beside the brain, plus it doesn't have the best track record yet as some people may be worse instead of better afterwards.
@@judil3294 When you have it as bad as me it's worth the risk. I got the full craniotomy and 3 nights in the ICU. Starting the process to get the left side done now.
Judi, there are lots of people out there (like me) that have had the surgery to correct SCDS. I had mine in May of 2014. Todd's video was the catalyst in confirming my diagnosis. Now, well I can't guarantee that your experience would be like mine, I can tell you that my recovery post surgery was way better than I ever expected. I never even needed a walker post surgery. For me, I knew the surgery was a success as soon as I woke up in the ICU. It was such an amazing experience to slowly hear the pounding pulsatile tinnitus fade away to nothing while I was in the ICU. I had my surgery on a Thursday afternoon, and I was discharged from the hospital at noon that Saturday. The surgery corrected almost everything as far as symptoms go. I did have some lingering cognitive issues, after all, they did have to move my brain around a little bit to access the hole and fix it. But I will tell you that the surgery is absolutely worth it. And in my case, it may have actually saved my life, because they found that I was at serious risk of having a brain herniation into my inner ear, and leaking cerebral spinal fluid. I actually requested to be able to meet with another patient of the doctor that did my surgery, and my wife and I did meet with her. My doctor's name was Frank Warren in Portland Oregon. I would be happy to speak to you if you want. Take care of yourself.
Thanks for this video. I am now dating a wonderful man who has this problem. He had the surgery, a patch put over a small hole in a bone near his ear, but it was not completely successful. The patch slipped off. However he says he is better than he was before. He also found out he has sleep apnea which prevents him from wanting to repeat the surgery. Your video helps me to understand what things are like for him.
Hello I've just came back from the hospital after diagnosed with this problem!!! The Sr was rather excited but he was driving me mad lol as all I wanted was a diagnoses & to be told I'm not going mad. This has been an on going thing for me for a number of years & I always blamed the fan at work blowing into my ear but hey it wasn't & now I've got this rare problem that the Dr's still don't know nothing about. Your video has been spot on & yes I do hear everything going on on my head. It's great
Todd, I was just diagnosed with this in Jan. I've had it most my life I do believe. I can't believe I found your video! Mine is getting much worse and I hear more than what you even described here, but mine is so similar. They want me to get surgery. Did you end up getting the surgery??? Please tell me if it helped you or not, and your experience! Thank you so much!!
How do you manage? My mother has this but she just has dizziness and rocking back and forth. She has the hole in one ear. I'm hoping it goes away on it's own since she is showing signs of improvement...sometimes. I've hear that the surgery can be risky, but if it is what is needed to fix this then I would want my mother to get it.
@@kormak8280 both of my ears have holes. It is very hard. Last year was rough. I'm getting better at dealing. I have xanax for when it us really bad and ambien for when it keeps me up. I try to keep a constant noise in the house. A fan, music, white noise maker. Silence is the worst. I did away with things that can irritate it. One thing was ibuprofen. Supposedly that can cause the noise to be louder so can antibiotics. Red dyes too, like Red pop. I also do lymphatic massage around my ears and neck, and bought one of those stone face rollers to massage around my neck and ears. It hasn't been easy but I'm managing better. Basically just Google everything and try it all!! That's what I did, because doctors are really no help! Good luck!
@@kormak8280 Check out these exercises to help train the ear. I'm finding more and more videos lately on balance and vertigo. ruclips.net/video/4qy4aP56cSg/видео.html
Yeah, my autophony symptoms are completely gone in the ear that was operated on. I still have some mild intermitten autophony in the other ear, and some mild nystagmus from that, too. But the surgery was a complete success, in my opinion. The only side effect has been that I have ringing tinnitus in the operated ear, louder than before.
@ElleBieber7 Hi, ElleBieber7. I'm sorry to hear you have the same inner ear problems. The surgery worked perfectly for me. I hope you are able to get your ear problems fixed, too.
@MostCamperKills I'm glad you enjoyed it. I look at it now and think what a terrible video it is from a videography standpoint, but I think that just goes to show how bad of shape I was in when we made it.
No, I haven't had vision problems. But I do know that tunnel vision is a symptom of intracranial hypertension (high cerebral spinal fluid pressure), which I do have. My neurologist told me to keep an eye out for that, no pun intended.
Todd, I was diagnosed about a month ago with SCDS in my left side. I have all the classic and typical symptoms. For me, the high pitched tinnitus has been the most annoying and maddening symptom. The dizziness gets bad, but I can at least calm it by not moving. The tinnitus is always there. I'm scheduled for surgery with Shelton in SLC on September 4th. I'm worried that my tinnitus is going to increase after surgery and never go away. Has yours gotten any worse or stayed the same?
I too have to have the surgery and I'm so nervous. Mine is a lot of these symptoms plus much more. The high pitch sound is the worst part!!! Good luck!
Hi Todd my name is Brian my ear doctor saw me today and gave me information on what's happening with me and told me to go home and read up on it and your video was recommended thank you for sharing after watching it I do believe I have this to I've had many surgeries over the years with tumors in both ears but nothing as strange as this its a bit spacey feeling and then my whole room goes sideways and spinning out of control I'm very thankful for your video and the time you took to make it I'm going back to work in a few days but until I have this corrected its the not knowing when it hits again has me worried At least there is something that can be done for it and for that I'm thankful again thank you Todd. BTW how are you doing now that you've had a few surgeries for it?
Yes, the symptoms can be disturbing when they're severe. And because many doctors don't know about this disorder, many patients get mis-diagnosed as having totally unrelated problems like depression. You wouldn't believe the number of stories I've heard from people who were prescribed drugs for this. No medicine in the world is going to magically make a broken or missing bone grow back.
I was diagnosed with the same syndrome about two months ago. Dr. Clough Shelton is performing the surgery on the 30th of this month. I am both relieved and overwhelmed. I have read through your blog and it gives me hope. I don't know what to expect. I'm not scared, but just anxious to get better. Did you experience a lot of pain from the craniotomy? I would appriciate any advice from you. Thanks Todd! Ii was glad to read that you are doing much better:)
Holy Cow, that's an excellent video. What a way to actually explain what's going on inside your head! Thank you. I have many of the same symptoms and it drives me crazy. Have turned down numerous drugs from ENT and sit in anguish over the thought of living life like this. How are youin 2012. It's August, give us an update please.... my space third base g mail
Hi, bradleychun. I haven't posted a video about my surgery experience because I've been too busy working on other more interesting movies the past few months. My whole story is pretty thoroughly documented online on the SCDS support web forum, though. Send me a message if you think you have SCDS (aka SSCD) and haven't joined the web forum yet.
Oh wow, thanks. These are some things that make me want to be a doctor. I mean now that i know about this stuff. I can learn more, and you know. Maybe help some that are bad. And not just with this.
@teddy35martha As far as pain goes from the craniotomy, I did have some pain afterward. The surgery cuts through one of the big muscles for the jaw, and so that muscle was pretty unhappy for a month or so afterward. As an aside, I've heard women do better with it than men because their jaw muscles are smaller.
I had auctally seen this on grays anatomy, and i am verry curious about it now. The girl on the show was going crazy. Because she heard everything, and she wouldnt eat or sleep. I guess i want to know if others did the same thing
@OmegaRiver Hi, OmegaRiver. My right ear is great now, and I don't have any of the problems with it. Unfortunately my left ear still has occasional problems. That's the side that didn't have surgery.
No, couldn't. For a LOT more information about the symptoms I had, how I was cured of them, and how I recovered from the surgery, check out my blog. And for a lot more information about SCDS and the typical symptoms, visit the SCDS Support web forum.
Hey, I have the same problems, but for me, the symptoms varie a lot throughout the day. I have difficulties talking properly sometimes, and get this pain in my jaw. Help! :c
Did anyone else feel sick and vertigo from watching this? Genuine question I’m newly Dx but have other health issues so trying to know if that’s part of this. Like I couldn’t watch the eye bouncing part bc mine are bouncing already 😂 thank you for making this video!!
Surgery fixed the problem, though I have a minor side-effect from it. There's a website called "SCDS support" you should go join. There is a TON of information there.
I know that now!! But at the time it was the only solution I could come up with then when I saw the Dr today he was jumping about like nobody's business saying how rare it was etc. I did have a trauma to my head when I wee but that on my left side to my head not my right & does it run in the family? My Mum was adopted so don't know anything about her " real family " health & my Dad has been dead for 20 years my Mum has been dead nearly 8 years. My eldest son might have the same so we are going
And just to add, it starts off every time at 3.40. Even when I took out the left headphone, it still affected my left ear by listening through the right...what the!
Well, from what I know, I seriously doubt a fan was the cause of the problem. From everything I've read, we who have SCDS have a genetic abnormality that causes an extremely thin bone in the skull. Then later in life there's some traumatic event that causes it to break. So most of the blame probably goes to your parents. :-)
Shirley K Yes, in my case. It's important to understand that side effects are common from these surgeries. There is no silver bullet. Some people are fortunate enough to get their hearing and balance back perfectly, but most of us live with little ongoing issues.
With all the noise in our heads already, why do you play music while talking to your audience? Seems everyone thinks this is what they should do, but already being hard of hearing, it about drives me up the wall. It would seem most people don't even notice.
Thank you Todd. I've been living with this since 2005 and nobody could understand what I meant and I quit telling my doctors. Isolation is the only way to cope most of the time. I have been finally diagnosed with SCDS this week and I have been given tremendous hope to function like a normal human being again. I have decided to have the surgery to improve my life. Thank you again for your video.
You are welcome!
You really nailed this. I try to explain what it's like to friends and family and this is perfect!
Wow, thank you for this video. I live in the Boston area and go to Mass Eye and Ear and I thought they had this great reputation... but They have never told me about this, I just happened to see in in my records last night, as I prepare for a Cochlear Implant surgery in 2 weeks. It was on my CT scan from almost 3 years ago! This is answering SO many questions for me! I've never said out loud that I can "hear my eyes move" because well all these internal sounds I thought everyone heard. I am having vestibular Physical therapy for my bad balance and I bet this will be good information for my PT as well. Thanks again for your very informative video!!
I suffer with this problem since June 2010 , just woke up my world the way your video demonstrates . My problem is in the left ear . I am Brazilian and here 99% of the doctor does not know this problem , including some I sent seek psychiatric help when I explained the problem. Finally found in a near my city, a doctor who did his PhD in Los Angeles and will make the surgery on me. Thanks for your video , I suffered many years without knowing that I had and your video helped me .
I'm glad it was helpful. Just two and a half weeks ago I had my third surgery related to this. You can read all the details on my blog site toddbradley.com or on the SCDSsupport.com web forum.
Hi Todd,
I never would have guessed the supreme ruler had this kind of affliction. That's one creative and courageous way to show what's it's like. The music at the beginning keeps it light and a bit detached. Thanks Todd. (O.)
I'm 70 and all my life, if I mentioned the symptoms people would look at me as if I was a bit nuts, so I stopped saying anything. Then a couple of years ago I mentioned it and immediate he says what it is. I was amazed, and now at least I know the reason.
Hi Todd, I too, had this condition and also the surgery. I am happy to say that despite the risk factors explained prior to surgery all went very well. You have come as close as anyone can to describe how it feels to have this. I was approached by an audio professional to do a 5 minute piece on this condition. Look it up, it's called, "the trouble with Rick". Thanks for your video.
You're welcome. The audio clip is great! For others who are looking for it, see here: theunobserved.com/culture/the_trouble_with_rick/
I was diagnosed a year ago. No one could figure out what was going on with me, and I thought I was going to go crazy; my ENT asked if I could hear my eyeballs move. I said, 'yes, can't every one hear that?' He told me that people don't ordinarily hear sounds in their bodies like their neck moving, swallowing click, gulches, heart beat,. I also have mesophonia, which is a little different, but still to do with my hearing. I'd love to talk with you more, particularly about surgery.
When I first saw this I almost cried. Thank you so much for capturing my daily experience so well!! I too have this disorder and try to explain to my friends and family what I experience and why I am so very quiet. Your video has gone further to illustrate the challenges that I and others now experience as "normal". Thank you so very much!!
Dont accept this as normal. If you havent already, find the nearest doctor to you that can fix it and start getting things taken care of. If you are anything like me it will get very bad very fast, waiting will only hurt you.
@@twitchyql7020 The surgery to fix this means working in the cavity beside the brain, plus it doesn't have the best track record yet as some people may be worse instead of better afterwards.
@@judil3294 When you have it as bad as me it's worth the risk. I got the full craniotomy and 3 nights in the ICU. Starting the process to get the left side done now.
Judi, there are lots of people out there (like me) that have had the surgery to correct SCDS. I had mine in May of 2014. Todd's video was the catalyst in confirming my diagnosis. Now, well I can't guarantee that your experience would be like mine, I can tell you that my recovery post surgery was way better than I ever expected. I never even needed a walker post surgery. For me, I knew the surgery was a success as soon as I woke up in the ICU. It was such an amazing experience to slowly hear the pounding pulsatile tinnitus fade away to nothing while I was in the ICU. I had my surgery on a Thursday afternoon, and I was discharged from the hospital at noon that Saturday. The surgery corrected almost everything as far as symptoms go. I did have some lingering cognitive issues, after all, they did have to move my brain around a little bit to access the hole and fix it. But I will tell you that the surgery is absolutely worth it. And in my case, it may have actually saved my life, because they found that I was at serious risk of having a brain herniation into my inner ear, and leaking cerebral spinal fluid. I actually requested to be able to meet with another patient of the doctor that did my surgery, and my wife and I did meet with her. My doctor's name was Frank Warren in Portland Oregon. I would be happy to speak to you if you want. Take care of yourself.
Thanks for this video. I am now dating a wonderful man who has this problem. He had the surgery, a patch put over a small hole in a bone near his ear, but it was not completely successful. The patch slipped off. However he says he is better than he was before. He also found out he has sleep apnea which prevents him from wanting to repeat the surgery. Your video helps me to understand what things are like for him.
Hello I've just came back from the hospital after diagnosed with this problem!!! The Sr was rather excited but he was driving me mad lol as all I wanted was a diagnoses & to be told I'm not going mad. This has been an on going thing for me for a number of years & I always blamed the fan at work blowing into my ear but hey it wasn't & now I've got this rare problem that the Dr's still don't know nothing about. Your video has been spot on & yes I do hear everything going on on my head. It's great
Brilliant demonstration sir!!
Wow, this is so interesting. Thanks for the video! Made me really understand how difficult it must be to have the syndrome. It must be terrible!
@krenrr1 Sorry to hear the patch fell off. That's not very common these days. You're welcome for the video. I'm glad it was helpful.
great and smart video,it helped my family understand my condition,thanks a lot
Todd, I was just diagnosed with this in Jan. I've had it most my life I do believe. I can't believe I found your video! Mine is getting much worse and I hear more than what you even described here, but mine is so similar. They want me to get surgery. Did you end up getting the surgery??? Please tell me if it helped you or not, and your experience! Thank you so much!!
How do you manage? My mother has this but she just has dizziness and rocking back and forth. She has the hole in one ear. I'm hoping it goes away on it's own since she is showing signs of improvement...sometimes. I've hear that the surgery can be risky, but if it is what is needed to fix this then I would want my mother to get it.
@@kormak8280 both of my ears have holes. It is very hard. Last year was rough. I'm getting better at dealing. I have xanax for when it us really bad and ambien for when it keeps me up. I try to keep a constant noise in the house. A fan, music, white noise maker. Silence is the worst. I did away with things that can irritate it. One thing was ibuprofen. Supposedly that can cause the noise to be louder so can antibiotics. Red dyes too, like Red pop. I also do lymphatic massage around my ears and neck, and bought one of those stone face rollers to massage around my neck and ears. It hasn't been easy but I'm managing better. Basically just Google everything and try it all!! That's what I did, because doctors are really no help! Good luck!
@@kormak8280 Check out these exercises to help train the ear. I'm finding more and more videos lately on balance and vertigo. ruclips.net/video/4qy4aP56cSg/видео.html
@@kandy73249 hey candy,
How are things going for you now?
I'm sorry to hear of your struggle
Yeah, my autophony symptoms are completely gone in the ear that was operated on. I still have some mild intermitten autophony in the other ear, and some mild nystagmus from that, too. But the surgery was a complete success, in my opinion.
The only side effect has been that I have ringing tinnitus in the operated ear, louder than before.
Hi Todd, how long post surgery did it take for the autophony and ear fullness to go
Yeah, you can see why I was having a hard time doing sound production and post-production!
@ElleBieber7 Hi, ElleBieber7. I'm sorry to hear you have the same inner ear problems. The surgery worked perfectly for me. I hope you are able to get your ear problems fixed, too.
@MostCamperKills I'm glad you enjoyed it. I look at it now and think what a terrible video it is from a videography standpoint, but I think that just goes to show how bad of shape I was in when we made it.
This is the location for the Superior Canal Dehiscence Support Group (SCDS) on Facebook. facebook.com/groups/221257197900489/
For completeness, I should point out there are at least two Facebook groups. Here is the link to another one.
facebook.com/groups/SCDS.support/
Todd, This was painful to watch and listen to having just had the surgery myself 12 days ago. Not having the autophony anymore is wonderful!
Lori (and anyone else), feel free to contact me if you need more information on SCDS/SSCD.
No, I haven't had vision problems. But I do know that tunnel vision is a symptom of intracranial hypertension (high cerebral spinal fluid pressure), which I do have. My neurologist told me to keep an eye out for that, no pun intended.
@OmegaRiver I think sound is just as pleasant as before. In fact, it's more pleasant, because now I don't have other sounds interfering.
Todd, I was diagnosed about a month ago with SCDS in my left side. I have all the classic and typical symptoms. For me, the high pitched tinnitus has been the most annoying and maddening symptom. The dizziness gets bad, but I can at least calm it by not moving. The tinnitus is always there. I'm scheduled for surgery with Shelton in SLC on September 4th. I'm worried that my tinnitus is going to increase after surgery and never go away. Has yours gotten any worse or stayed the same?
I too have to have the surgery and I'm so nervous. Mine is a lot of these symptoms plus much more. The high pitch sound is the worst part!!! Good luck!
Hi Todd my name is Brian my ear doctor saw me today and gave me information on what's happening with me and told me to go home and read up on it and your video was recommended thank you for sharing after watching it I do believe I have this to I've had many surgeries over the years with tumors in both ears but nothing as strange as this its a bit spacey feeling and then my whole room goes sideways and spinning out of control I'm very thankful for your video and the time you took to make it I'm going back to work in a few days but until I have this corrected its the not knowing when it hits again has me worried
At least there is something that can be done for it and for that I'm thankful again thank you Todd.
BTW how are you doing now that you've had a few surgeries for it?
Yes, the symptoms can be disturbing when they're severe. And because many doctors don't know about this disorder, many patients get mis-diagnosed as having totally unrelated problems like depression. You wouldn't believe the number of stories I've heard from people who were prescribed drugs for this. No medicine in the world is going to magically make a broken or missing bone grow back.
I was diagnosed with the same syndrome about two months ago. Dr. Clough Shelton is performing the surgery on the 30th of this month. I am both relieved and overwhelmed. I have read through your blog and it gives me hope. I don't know what to expect. I'm not scared, but just anxious to get better. Did you experience a lot of pain from the craniotomy? I would appriciate any advice from you. Thanks Todd! Ii was glad to read that you are doing much better:)
how are you doing now? did the surgery help?
I have this also, having surgery soon!!
Holy Cow, that's an excellent video. What a way to actually explain what's going on inside your head! Thank you. I have many of the same symptoms and it drives me crazy. Have turned down numerous drugs from ENT and sit in anguish over the thought of living life like this. How are youin 2012. It's August, give us an update please.... my space third base g mail
Hi, bradleychun. I haven't posted a video about my surgery experience because I've been too busy working on other more interesting movies the past few months. My whole story is pretty thoroughly documented online on the SCDS support web forum, though. Send me a message if you think you have SCDS (aka SSCD) and haven't joined the web forum yet.
Oh wow, thanks. These are some things that make me want to be a doctor. I mean now that i know about this stuff. I can learn more, and you know. Maybe help some that are bad. And not just with this.
Well todd i guess i joined your club. My ct scan showed that my left ear is thinning and that the right one is gone. Did surgery fix everything?
@teddy35martha As far as pain goes from the craniotomy, I did have some pain afterward. The surgery cuts through one of the big muscles for the jaw, and so that muscle was pretty unhappy for a month or so afterward. As an aside, I've heard women do better with it than men because their jaw muscles are smaller.
I had auctally seen this on grays anatomy, and i am verry curious about it now. The girl on the show was going crazy. Because she heard everything, and she wouldnt eat or sleep. I guess i want to know if others did the same thing
Yeah, I asked a musician friend of mine to make some cheesy electronic music from a Casio keyboard, and he hit the nail on the head.
It is 24/7 and it hasn't gotten better. But I only notice it in very quiet places.
Great explication!
Intense. My adhd seems less bothersome than ever. I'm JAZZED!
Oh and did you feel fullness in your right ear?
Well a hearing test showed that i could have it no it for sure next tuesday. Did you have have tunnel vision?
Could you feel your eyes move in your ear as well as hear them move?
@OmegaRiver Hi, OmegaRiver. My right ear is great now, and I don't have any of the problems with it. Unfortunately my left ear still has occasional problems. That's the side that didn't have surgery.
No, couldn't. For a LOT more information about the symptoms I had, how I was cured of them, and how I recovered from the surgery, check out my blog. And for a lot more information about SCDS and the typical symptoms, visit the SCDS Support web forum.
Where is your blog?
I feel like im going insane from autophony! I don't know what to do
Hey, I have the same problems, but for me, the symptoms varie a lot throughout the day. I have difficulties talking properly sometimes, and get this pain in my jaw. Help! :c
There is now an official non-profit charity related to Superior Semicircular Canal Dehiscence Syndrome: www.scdssociety.com/
"Official" in what sense?
Did anyone else feel sick and vertigo from watching this? Genuine question I’m newly Dx but have other health issues so trying to know if that’s part of this. Like I couldn’t watch the eye bouncing part bc mine are bouncing already 😂 thank you for making this video!!
Surgery fixed the problem, though I have a minor side-effect from it. There's a website called "SCDS support" you should go join. There is a TON of information there.
What is the side effect?
I know that now!! But at the time it was the only solution I could come up with then when I saw the Dr today he was jumping about like nobody's business saying how rare it was etc. I did have a trauma to my head when I wee but that on my left side to my head not my right & does it run in the family? My Mum was adopted so don't know anything about her " real family " health & my Dad has been dead for 20 years my Mum has been dead nearly 8 years. My eldest son might have the same so we are going
No, I never had tunnel vision. That's not one of the common symptoms of SCDS, from what I've heard and read. But stranger things have happened.
Ha ha...got to laugh....after listening to your vid through headphones, it set off my left ear problems - thud thud thud! Great vid
And just to add, it starts off every time at 3.40. Even when I took out the left headphone, it still affected my left ear by listening through the right...what the!
@haydenman2 Hi, haydenman2. Give me a call at 720-480-4890 and I can answer all your questions.
Well, from what I know, I seriously doubt a fan was the cause of the problem. From everything I've read, we who have SCDS have a genetic abnormality that causes an extremely thin bone in the skull. Then later in life there's some traumatic event that causes it to break. So most of the blame probably goes to your parents. :-)
increased tinnitus
Todd Bradley.....do you mean the surgery increased the tinnitus??
Shirley K Yes, in my case. It's important to understand that side effects are common from these surgeries. There is no silver bullet. Some people are fortunate enough to get their hearing and balance back perfectly, but most of us live with little ongoing issues.
With all the noise in our heads already, why do you play music while talking to your audience? Seems everyone thinks this is what they should do, but already being hard of hearing, it about drives me up the wall. It would seem most people don't even notice.
what was the side effect@derbyverse
is it 24/7? has it got better?