Superior Canal Dehiscence Syndrome - Getting a Correct Diagnosis
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- čas přidán 6. 09. 2024
- Johns Hopkins otologist and SCDS surgeon John Carey, M.D., discusses the importance of getting an accurate SCDS diagnosis, as this condition can be misdiagnosed. Learn about the symptoms of SDCS and what tests are needed for an accurate diagnosis. Learn more at: www.hopkinsmedi...
Dr. Carey gave me back my life this past May 2017. He is my hero and his skilled hands are blessed by God.
Thank you for sharing your kind comment with us! We are happy to hear you are doing well!
JimsPal So happy for you. Congratulations.
Thank you, Dr. Carey! You and your team saved my life! I can't say it enough. Thank you, thank you, thank you! Dec 2017 you changed my life for the better.
I feel this is the answer to everything. I have EDS and I thought the vertigo might have been POTS but my cardiologist said he doesn’t think it’s tachycardia related. He thinks it’s ear canal related. So then I thought maybe BPPV. HOWEVER I will get vertigo without even moving my head but just merely shifting my eyes.
I came across SSCSD today when Googling “hear eyes moving/shifting in my own head” and BAM! I have so many of the symptoms including autophony (crepitus, heartbeat, blood flowing, breathing, blinking ) along with nystagmus, tinnitus, hyperacusis, misophonia, fullness/pressure in ears (especially in barometer), migraines
Thank you for all this info and now I will seek the correct route 😊
Tha EDS (connective tissue printer low ink) has to be a core reason.. ey docs what else would maybe print less with normal age that we shouldha checked 4 ya poked, spun and flipped me around.. toldya seeing ya was making me sick..lol.. not cutting me , ohhnnononono
Same .was first diagnosed with vestibular migraine..the bppv...did vestibular therapy but when I told my doctor about the heart beat swishing really loud and the cracking in my neck and all of that he sent me for the CT scan and the bone is thin...so idk all I know is I can't live like this..oh and the incentive constant ringing
How do you get diagnosed when 22 doctors tell you it's just anxiety lol
LMAO RIGHTTTT
They say everything is mental health, its absolutely disgusting.
You go to 23!
I'm having very strange symptoms now for a few months that sound strange. In the month of February I had severe spinning vertigo where I couldn't get up and I kept vomiting. Shortly after that I've been getting daily headaches. When I lay on my right ear I feel a weird pressure in my head and it feels like it will trigger the spinning so I can't lay on that side for long. I had a balance test done with the chair and I'm waiting on the results. This is so hard to deal with. Every day I feel awful as if I didn't get any sleep but I did sleep long enough. So far I haven't had much help from doctors.
Sounds like bppv
Its Semicircular Superior Canal Dehiscence (sscd)
Have you checked out and tried the Epley maneuver? I damaged the balance center of my left ear after a fall in 2007. Lately the vertigo returned. I do the Epley in the morning and the balance settles until I lay down again. If I would have stayed propped up overnight long enough to let the crystal dissolve, 36-48 hours I would have shaken it faster, but finally it's almost gone again. To stop the nausea I find it helps not to swallow saliva and I have no idea why but I learned that back being a car sick kid. It also helps to keep a little food in the stomach such as an occasional spoonful of cream of wheat.
Just got diagnosed with this syndrome today I’ve been having dizziness for the last three years after Covid. I’m glad that they finally was able to pinpoint what is the cause of my dizziness. Will be looking into surgery soon.
Best of luck on your journey dude 🎧☺️
I had dizziness for 4 years now and symptoms are getting worse…I visited many doctors and checked everything except internal ear….I got my MRI today and I have to go back for the wonderful doctor who sent me to do that…I don’t know what the treatment will be but at lest I can see the light at the end of tubal…
So I have all the symptoms horrible debilitating symptoms and the CT scan was positive for but the vemp test was negative so I have to get a video appointment with John Hopkins my ENT wants me to I live in Philadelphia so I would need to make arrangements to go there to go there.
I'm currently talking with my doctor to see if this is a possibility. A lot of the issues I never talked to anyone about because I thought everyone dealt with being able to hear yourself blink or when you move your eyes or neck or any of these other problems I've been dealing with.
i have abnormal ovemp in my injured ear that got hit and started all my scds symptoms. severe dizziness. 65% asymmetry between ears. audiologist wrote results suggests third window. ct scan didn’t show any dehiscence …. i’m gonna get a second opinion but i’m so afraid
Any specialist in Houston that can do this procedure?
I need help but I can’t seek for help sadly😢
Doctor l have this problem one year to go how l can get the surgery l live Texas and my ent teld me the surgery here is like 100k please any help mis horrible is no live with this problem please help me my problem is superior canal dehiciencia síndrome
Anyone know of an experienced Doctor in the Jacksonville, Florida area. Also, there a website dedicated to SCDS?
Did you find one?
Any specialists in nj you recommend DR ?
One of the best scds specialist is in new jersey, Dr P Ashley Wacham
Wackym
I go to the University Of Penn here in Philly and as good as those guys are they told me to go to Hopkins
Hi sir my problems supirior canal dehiscence syndrome.but I'm poor sir no money.
Left ear 👂
Hello
I have been diagnosed with a dehiscence of the inferior aspect of the posterior limb of the superior semicircular canal and the adjacent posterior surface of the petrous bone 2 mm superior to the common crus.
My cvemp was was not in agreement with a semi Circular canal. However my doctor (prof saeed) says that the dehiscence is a factor in my symptom complex. Along with migrainous vertigo.
My question to you guys is, Can the c-vemp or o-vemp not show a dehiscence causing symptoms but actually the dehiscence is the cause ?
Thankyou
Apologies for the delay. It is challenging for us to provide meaningful insights on your specific medical situation. If you would like a second opinion, please reach out to us at 888-872-1408. We have some general information that may be helpful: bit.ly/2z5gDob and bit.ly/2gGKA6g.
I would to send a special thank you to Dr Omalley of Vanderbilt University Medical Center. I would also like to thank all of the doctors who correctly follow and practice in the field of nuerotology and otolaryngology. I have had many vestibular tests done and very few physicians have the capacity to diagnose these symptoms correctly. Living with minere`s syndrome and superior canal dehiscence bilaterally(with a transmastoid repair with round window failure) has been very difficult. The knowledge provided by the medical staff being John Hopkins, Vanderbilt, or UCLA has been very helpful in clarifying these diagnoses for me and being able to cope with something that makes life very challenging at the very least.
And also to relate on what John Hopkins had previously stated, a special ct scam examination specifically looking for dehiscence could be very beneficial to you. If the radiaologist does not know what they are looking for it can be hard for them to make a determination on the direct cause of your symptoms. Also, have you had both cvemp and ovemp testing done? These three things in combination with an audiogram would be able to give your physician a good starting point. Sorry for the late reply as I did not see this post until recently.
Left ear 👂