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!
…it’s an understatement to say it is hard to think or be a part of society with this. It’s crippling. Impossible to explain unless experienced; it’s a quiet destruction. I’m pretty scared I keep coming back your your videos. Not sure if you still check/update. I’d love to get in touch with you if possible.
Thank you Mindy, I was just diagnosed after 2.5yrs. Hopefully I’ll soon be able to have it fixed. Felt very alone until I was diagnosed and could then find many people with the exact same symptoms and experiences. Thanks again, it’s somewhat comforting to hear the experiences of others.
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
Yes. Thank you. It is VERY hard to describe to people and sharing videos like this help. I work construction, and I've been actively trying to ignore symptoms for well over a decade. I've missed lots of work because of this and now that I've been diagnosed, paying attention to the symptoms make it worse. Some days, I hardly notice it. Other days, it can feel debilitating. Most days, it's unpleasant. Walking down a sidewalk with constant passing traffic can give me migraine-like symptoms. I also feel like when I can actually get good rest, my brain is better able to deal. If not, any or all the symptoms are worse. Especially the motion sickness. Thank you for this.
You've described to a 'T' what I've been going through for a year now with my left ear. It takes me a hour to recovery from a conversation or phonecall. Headaches. The autophony is the worst. Thank you for sharing.
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.
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!
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.
Hey Mindy, I know what you’re going through. I’ve had SCDS for about 10 years now. It’s definitely not a easy thing to go through. I have it in my right ear and I wear an ear plug at time to help with the loud sounds and it’s easier when i speak. No surgery for me yet. Hope you’re doing much better .
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.
Thank you for sharing 🙏🏼 for spreading awareness! Just one remark if I may … for people with severe vertigo and balance issues (like me ) surgery very rarely help 😥
Hi Mindy. I had surgery to correct my SCDS back in May, 2014. My surgery was very successful, and removed almost all the symptoms I had, which were almost all of the known ones at the time (balance & instability, autophony, heavy brain fog, headaches, sound induced dizziness, hearing interior body noises, hearing loss, oscillopsia). My surgery was done by Dr. Frank Warren in Portland, OR. He now works for the Oregon Clinic. I did have some mild aphasia for a few months post-surgery, but it resolved over time. I'm still somewhat sensitive to loud music, but I can handle that! I'd be willing to share my story if it would help someone.
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.
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 have a new diagnosis for this, but have been suffering with the symptoms you describe for 2 years. Where did you have the repair? Thank you for taking the time to educate others and post this.
I just found out my diagnosis for this. I hear ringing all the time… sensitivity to sound.. I’m an introvert as well and people overwhelm me too but I love my family and want to be around people. I felt the same with hearing too much.. was the surgery worth it and how was the recovery time? Thank you for this.
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
Like its painfully loud and the frequency is turned to max trebble. Chewing is absolute torture and fans make me get physically sick. Sounds can make me off balance. Awful ☹😵😵😵
Same here! I’ve researched and found a team of doctors at UCLA that have been working together for several years to learn more about the condition and to improve on the procedure that’s used to correct it. Until I watched their videos I didn’t think about the fact that I may have to go out of state to have the procedure done since it’s still so rare and so few doctors have enough knowledge of it or practice at the procedure. The UCLA team, can’t remember their names right now, seem to be up to date on the condition and fairly experienced at the procedure within the last hand full of years. Any more info would be much appreciated! Thank you!
Do you know of any support groups for SCDS? My wife just had surgery several weeks ago and she is having some difficulties with her recovery. She's getting really frustrated with her recovery and her Dr is very vague about her path to recovery. Please help.
I hope by now, you have found some support. There are a couple of groups on Facebook. Just type in the condition and you will see there are a couple of large groups on there. All the best to you both ✌️➕❤
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!
Thank you for sharing your story. I have been diagnosed with SCDS and have an appointment with Dr. Jacques Herzog in Saint Louis
…it’s an understatement to say it is hard to think or be a part of society with this. It’s crippling. Impossible to explain unless experienced; it’s a quiet destruction. I’m pretty scared I keep coming back your your videos. Not sure if you still check/update. I’d love to get in touch with you if possible.
Thank you Mindy, I was just diagnosed after 2.5yrs. Hopefully I’ll soon be able to have it fixed. Felt very alone until I was diagnosed and could then find many people with the exact same symptoms and experiences. Thanks again, it’s somewhat comforting to hear the experiences of others.
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
Yes. Thank you. It is VERY hard to describe to people and sharing videos like this help. I work construction, and I've been actively trying to ignore symptoms for well over a decade. I've missed lots of work because of this and now that I've been diagnosed, paying attention to the symptoms make it worse. Some days, I hardly notice it. Other days, it can feel debilitating. Most days, it's unpleasant. Walking down a sidewalk with constant passing traffic can give me migraine-like symptoms. I also feel like when I can actually get good rest, my brain is better able to deal. If not, any or all the symptoms are worse. Especially the motion sickness.
Thank you for this.
You've described to a 'T' what I've been going through for a year now with my left ear. It takes me a hour to recovery from a conversation or phonecall. Headaches. The autophony is the worst. Thank you for sharing.
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.
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!
thank you ! Very accurate description
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.
Did you get surgery?
Hey Mindy, I know what you’re going through. I’ve had SCDS for about 10 years now. It’s definitely not a easy thing to go through. I have it in my right ear and I wear an ear plug at time to help with the loud sounds and it’s easier when i speak. No surgery for me yet. Hope you’re doing much better .
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.
Thank you for sharing 🙏🏼 for spreading awareness! Just one remark if I may … for people with severe vertigo and balance issues (like me ) surgery very rarely help 😥
Oh really! I wasn't aware of that! Why? I wonder? That's so hard!
@@mindyrowley9641 ruclips.net/video/JzxYKndgp5w/видео.html that’s the video from Dr. Gopen - where they explain it and show statistics.
Hi Mindy. I had surgery to correct my SCDS back in May, 2014. My surgery was very successful, and removed almost all the symptoms I had, which were almost all of the known ones at the time (balance & instability, autophony, heavy brain fog, headaches, sound induced dizziness, hearing interior body noises, hearing loss, oscillopsia). My surgery was done by Dr. Frank Warren in Portland, OR. He now works for the Oregon Clinic. I did have some mild aphasia for a few months post-surgery, but it resolved over time. I'm still somewhat sensitive to loud music, but I can handle that! I'd be willing to share my story if it would help someone.
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.
Good luck x
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 have a new diagnosis for this, but have been suffering with the symptoms you describe for 2 years. Where did you have the repair? Thank you for taking the time to educate others and post this.
Hi - I’m looking at John Hopkins. Check them out.
4 kids congrats!!!
I just found out my diagnosis for this. I hear ringing all the time… sensitivity to sound.. I’m an introvert as well and people overwhelm me too but I love my family and want to be around people. I felt the same with hearing too much.. was the surgery worth it and how was the recovery time? Thank you for this.
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
Did you ever feel like you didn’t wanna get up to eat and that made you feel even weaker ?
Like its painfully loud and the frequency is turned to max trebble. Chewing is absolute torture and fans make me get physically sick. Sounds can make me off balance. Awful ☹😵😵😵
Had mine show up on CT scan and clinically. Next appointment they will do the VEMP testing.
How did it go? I think I have this, mine showed on CT also.
@ positive on VEMP testing. Weird how the sound really makes your eyes bounce around. I am scheduled for surgery in Dallas December 4.
@ I was positive for sscd. They said all data confirmed that I have it on my right side. Surgery is tomorrow
How long was your recovery from surgery?
hi, my name is Lucas and i'm from Brazil.
I would like to know who the doctors were who operated on you, I really want to have my surgery
Same here! I’ve researched and found a team of doctors at UCLA that have been working together for several years to learn more about the condition and to improve on the procedure that’s used to correct it. Until I watched their videos I didn’t think about the fact that I may have to go out of state to have the procedure done since it’s still so rare and so few doctors have enough knowledge of it or practice at the procedure. The UCLA team, can’t remember their names right now, seem to be up to date on the condition and fairly experienced at the procedure within the last hand full of years. Any more info would be much appreciated! Thank you!
Do you know of any support groups for SCDS? My wife just had surgery several weeks ago and she is having some difficulties with her recovery. She's getting really frustrated with her recovery and her Dr is very vague about her path to recovery. Please help.
I hope by now, you have found some support. There are a couple of groups on Facebook. Just type in the condition and you will see there are a couple of large groups on there. All the best to you both ✌️➕❤
How do you feel now after surgery? Do you have any kind of hearing loss?
Who did your surgery
I’m dizzy all the time cause of it 😞
What helped dizziness was - an anti migraine diet, Vit B2.
My Dr also prescribed Nortriptyline- which I did not need.
This is my problem too. It can be constant. It’s terrible.