I love these 2 doctors. In 2020 my 13 year old son had bilateral surgeries for this condition. Dr. Yang and Dr. Gopen gave my son his life back. He was completely debilitated by SSCD and now he is 100% better.
@@lifehomemade They won't do both at the same time. You have to wait a minimum of 6 weeks between surgeries. I'm also waiting to be seen for bilateral SCDS.
Thank you for making these videos so sscd patients can show it to ER doctors or their general care doctors who’ve never heard of this (or like in my case my GI doctor telling me “Well, hearing your heartbeat is due to anxiety not this condition you think you have”) I wish that you guys could’ve talked more about the symptoms and how it effects someone’s life a bit more but I think this is a great resource to send to physicians, family/friends, etc. Thank you ❤
Drs. Gopen and Yang operated on my SSCD in 6/23. My most serious problem was with brain fog/memory, and I could tell that problem was pretty much solved as soon as I woke up from surgery. My balance problems have also improved a great deal though that has taken longer. My local physicians told me that they didn’t think it was SSCD and that the condition probably couldn’t be fixed even if I did have it. I am so grateful I didn’t give up, came across one of Gopen and Yang’s earlier videos, and was able to go to UCLA. When I was researching this, I didn’t find many doctors in the US that understood the condition. I like that these guys are also training others.
As a Veteran, I have been treated for Meniere's for over 10 years. Yesterday, my new ENT told me I need to take a CT scan for this very named condition. I asked her about the treatment and she tells me about a few surgeries - not anything I expected from a new ENT appointment. But I came home and looked it up. The Messiah, woosh, zhoop, shop, hearing my own voice at time, plus hearing bones pop and crack, swallowing and digestive noises plus various types of tinitis, vertigo and other symptoms rings true.
For the past 40 years (I’m 70 now), I thought I had Menieres Disease. I haven’t had any episodes for many years but continued to have hypersensitive hearing, pressure and buzzing in the ears. Had a vertigo attack recently and decided to follow through and see an ENT. To my surprise, I never had Menieres. I always thought my left ear was my “bad” ear, but my right ear had bigger issues. My CT scan confirmed I have third window syndrome. SSCD in the right ear and Cochlear- Facial Dehiscence in the right. I’m leaning towards having surgery with the transmastoid approach. Pretty scary, but I think it’s the right choice for me.
I'm sorry you suffered so many years with the wrong diagnosis. I'm glad to know they've pinpointed the actual problems. Prayers for you that you have a successful surgery and improve your quality of life.
Hey guys. It's good to see an update of this video. I wanted to know if you guys are up to date on the subsets of Hyperacusis, and if you have seen patients with the Pain Hyperacusis subset? I was just diagnosed with SSCD today, and i have most of the auditory symptoms you guys presented. However, my biggest complaint is the sound induced sharp stabbing pain in my ears and, more recently, my cheeks.
I would love to see statistics on resolution of symptoms in patients. I am currently working on getting a video visit with Dr.Gopen. The only reason i have waited 2 yrs to have the repair, has been because of lack of patient outcome info.
What a wonderful overview! I’m an ob/gyn and 11yrs out of med school, so what I remember about ear canal issues is the Epley maneuver 😂. My friend is being worked up for SSCD, and this video gave me some great baseline knowledge so that I can be more informed when talking with her. ❤
Thank you guys! I am from germany, having bilateral SCDS and huge tegmen tympani defects on both sides. I have at least 7 surgeries behind me in 5 hospital stays (in 18 months!). Both sides plugged via mastoid and both TTDs and SCDs covered by big bone(cement) plates via MFC approach. The outcome is... it's complicated... My question is: How far is the 3D implant technology away from now? From my technical understanding the outcome with an 3D implant, adapted to the temporal bone topography (!), must be quite better - and I am pretty sure that this would have saved me from the many surgeries (and side effects). I am curious for future patients. Cheers to all of you @UCLA
I'm so frustrated because I've been told I have Lateral semicircular canal dehiscence but I can't seem to find any information on this condition. It's all SSCD and I'm trying to find out what treatment options are available for LSCD. Is treatment for LSCD the same or different? Please help.
er, I think my doctor, Gerard Gianoli, actually pioneered the small incision and small cranial opening - I had mine done by him in 2011 - I asked for a small incision in front of the ear and he complied and said afterwards that it was a good way to do it from then on
I have SCDS, I can hear my eyes move and have pulsatile tinnitus. Also, I get frequent headaches and some vertigo. I just had my CAT scan done last week, hopefully surgery will relieve my symptoms.
Sound cancellation makes mine totally worse..my music on my speaker phone is one way a Dr detected my sscd . maskers are still noise which triggers mine. The only little relief I get is ear plugs or cotton.
Do you have a contact list of doctors in our area that may be able to help us? Anyone in Vancouver BC? I was told by a 2nd ENT there's nothing he can do and dissuaded me from getting the tests done that would determine if I at least have SSCD claiming Canada doesn't do the surgery anyway... I may try another ENT but seems useless
I love these 2 doctors. In 2020 my 13 year old son had bilateral surgeries for this condition. Dr. Yang and Dr. Gopen gave my son his life back. He was completely debilitated by SSCD and now he is 100% better.
Did they do both ears at the same time? I'm waiting to be seen there and I have bilateral SSCD. I'm hoping for just one surgery to get them both done.
@@lifehomemade They won't do both at the same time. You have to wait a minimum of 6 weeks between surgeries. I'm also waiting to be seen for bilateral SCDS.
Thank you for making these videos so sscd patients can show it to ER doctors or their general care doctors who’ve never heard of this (or like in my case my GI doctor telling me “Well, hearing your heartbeat is due to anxiety not this condition you think you have”) I wish that you guys could’ve talked more about the symptoms and how it effects someone’s life a bit more but I think this is a great resource to send to physicians, family/friends, etc. Thank you ❤
Drs. Gopen and Yang operated on my SSCD in 6/23. My most serious problem was with brain fog/memory, and I could tell that problem was pretty much solved as soon as I woke up from surgery. My balance problems have also improved a great deal though that has taken longer. My local physicians told me that they didn’t think it was SSCD and that the condition probably couldn’t be fixed even if I did have it. I am so grateful I didn’t give up, came across one of Gopen and Yang’s earlier videos, and was able to go to UCLA. When I was researching this, I didn’t find many doctors in the US that understood the condition. I like that these guys are also training others.
how are you feeling?
As a Veteran, I have been treated for Meniere's for over 10 years. Yesterday, my new ENT told me I need to take a CT scan for this very named condition. I asked her about the treatment and she tells me about a few surgeries - not anything I expected from a new ENT appointment. But I came home and looked it up. The Messiah, woosh, zhoop, shop, hearing my own voice at time, plus hearing bones pop and crack, swallowing and digestive noises plus various types of tinitis, vertigo and other symptoms rings true.
For the past 40 years (I’m 70 now), I thought I had Menieres Disease. I haven’t had any episodes for many years but continued to have hypersensitive hearing, pressure and buzzing in the ears. Had a vertigo attack recently and decided to follow through and see an ENT. To my surprise, I never had Menieres. I always thought my left ear was my “bad” ear, but my right ear had bigger issues. My CT scan confirmed I have third window syndrome. SSCD in the right ear and Cochlear- Facial Dehiscence in the right. I’m leaning towards having surgery with the transmastoid approach. Pretty scary, but I think it’s the right choice for me.
I'm sorry you suffered so many years with the wrong diagnosis. I'm glad to know they've pinpointed the actual problems. Prayers for you that you have a successful surgery and improve your quality of life.
Hey guys. It's good to see an update of this video. I wanted to know if you guys are up to date on the subsets of Hyperacusis, and if you have seen patients with the Pain Hyperacusis subset? I was just diagnosed with SSCD today, and i have most of the auditory symptoms you guys presented. However, my biggest complaint is the sound induced sharp stabbing pain in my ears and, more recently, my cheeks.
I would love to see statistics on resolution of symptoms in patients.
I am currently working on getting a video visit with Dr.Gopen. The only reason i have waited 2 yrs to have the repair, has been because of lack of patient outcome info.
What a wonderful overview! I’m an ob/gyn and 11yrs out of med school, so what I remember about ear canal issues is the Epley maneuver 😂. My friend is being worked up for SSCD, and this video gave me some great baseline knowledge so that I can be more informed when talking with her. ❤
Thank you guys! I am from germany, having bilateral SCDS and huge tegmen tympani defects on both sides. I have at least 7 surgeries behind me in 5 hospital stays (in 18 months!). Both sides plugged via mastoid and both TTDs and SCDs covered by big bone(cement) plates via MFC approach. The outcome is... it's complicated...
My question is: How far is the 3D implant technology away from now? From my technical understanding the outcome with an 3D implant, adapted to the temporal bone topography (!), must be quite better - and I am pretty sure that this would have saved me from the many surgeries (and side effects). I am curious for future patients.
Cheers to all of you @UCLA
What is cost of this surgery?
I have Osteogenesis Imperfecta type 1 and was just diagnosed via Myelogram for this SSCD. Have y’all seen this in OI?
I'm so frustrated because I've been told I have Lateral semicircular canal dehiscence but I can't seem to find any information on this condition. It's all SSCD and I'm trying to find out what treatment options are available for LSCD. Is treatment for LSCD the same or different? Please help.
er, I think my doctor, Gerard Gianoli, actually pioneered the small incision and small cranial opening - I had mine done by him in 2011 - I asked for a small incision in front of the ear and he complied and said afterwards that it was a good way to do it from then on
I have SCDS, I can hear my eyes move and have pulsatile tinnitus. Also, I get frequent headaches and some vertigo. I just had my CAT scan done last week, hopefully surgery will relieve my symptoms.
Sound cancellation makes mine totally worse..my music on my speaker phone is one way a Dr detected my sscd . maskers are still noise which triggers mine. The only little relief I get is ear plugs or cotton.
Have had many issues with this after being diagnosed with sscd after injuries sustained in Afghanistan.
Can anyone on your team treat a cranial csf leak in conjunction to treating me for SCDS?
Do you have a contact list of doctors in our area that may be able to help us? Anyone in Vancouver BC?
I was told by a 2nd ENT there's nothing he can do and dissuaded me from getting the tests done that would determine if I at least have SSCD claiming Canada doesn't do the surgery anyway...
I may try another ENT but seems useless
Im outside of Gainesville, Georgia. Where is the nearest doctor to me with the knowledge of this to evaluate me for it?? Please
What is the cost of surgery? Any ideas?
Approx $500K
@ thank you!