Does anyone have Superior Canal Dehiscence Syndrome and fine it severe

I actually have this and am in the middle of diagnosis and treatment. I'd suggest ENT (they can order scans). But your dentist may be able to detect issues with upper back teeth and refer you to endodontist. Sometimes you need CBCT scan to detect issues and they are only done by endodontists and some oral surgeons. My CT scans & MRI missed an abscessed tooth that had eaten bone and caused sinus tract to roof of my mouth. I believe that it is the root of all my problems. My abscessed tooth never hurt.

So much info and help from you!! Thank you! I hope you are feeling well
and doing better. Seems an enormous quest! I knew none of this!
The MRI I was told “okay” as was a painful US of my left temple. Pain I
thought was a symptom of something but I am now discarded. Exhausted,
sometimes confused, and so overwhelmed by pain, hearing loss/issues and 79
in a few days.

My left eye hurts and swells. Cataracts in both w central serous
retinopathy. I can see and see 20/25 and yelled at by ophthalmologist as
dr doesnt understand why! surgeons have told me will do surgery without
any meds. Next one gave me two epipens and eyedrops my pharmacist told me
not to take as could kill me! Need surgery someway.

Stomach/nutrition issues. No longer PCP….How do you manage what you do?
You are courageous and helpful. If Mayo will take me and if I can go that
route alone again. ..I awoke in chest pain and bp was high n breathing off.

Geriatric patient so fear infections as reactive to most meds. Where would
you start…how did you do so much? Forgive my only now responding. I must
write this down and find help if can do it! Wish you health and thank
you! Strongest appreciation of you!😌👍

It is sometimes difficult to advocate for yourself, especially when you're not feeling well. When doctors don't have answers or dismiss your symptoms, be persistent. Find another doctor. Eventually you will find the right one for you. I learned this when I had a complicated hip problem that caused a lot of pain. I consulted over 30 doctors/NPs/PAs before I had answers and was fixed correctly. At times I wanted to give up and am glad my son pushed me to find answers. So here I am again with a different issue. Today am seeing #9. I hope he can help. If not I'll ask him where to go next. It's okay to take a break. Sometimes it's necessary for your mental health. But don't give up.

Thanks! I dont have access to so many drs unless I move to a much larger
town and where public transport. I am looking on internet to do so. Find
my drs and the rest will follow.
May your visit today give you relief! I wish you well and painfree! How
do you maintain physical and mental energies? I encourage you to keep on
keeping on as you are an example!
On Tue, Sep 8, 2026 at 7:42 AM Mayo Clinic Connect < nf+a523dc65+142857948@n1.hubapplication.com> wrote:

> ## reply above this line ##
>
>
> Mayo Clinic Connect
> *Comment* posted by @arbez
>
> on discussion "Does anyone have Superior Canal Dehiscence Syndrome and fine
> it severe".
>
> It is sometimes difficult to advocate for yourself, especially when you're
> not feeling well. When doctors don't have answers or dismiss your symptoms,
> be persistent. Find another doctor. Eventually you will find the right one
> for you. I learned this when I had a complicated hip problem that caused a
> lot of pain. I consulted over 30 doctors/NPs/PAs before I had answers and
> was fixed correctly. At times I wanted to give up and am glad my son pushed
> me to find answers. So here I am again with a different issue. Today am
> seeing #9. I hope he can help. If not I'll ask him where to go next. It's
> okay to take a break. Sometimes it's necessary for your mental health. But
> don't give up.
> VIEW & REPLY
>
> ------------------------------
> Unsubscribe
>
> from this content and see links to review my email settings.
>

On Tue, Sep 8, 2026 at 7:58 AM Jimi Miller wrote:

> Thanks! I dont have access to so many drs unless I move to a much larger
> town and where public transport. I am looking on internet to do so. Find
> my drs and the rest will follow.
> May your visit today give you relief! I wish you well and painfree! How
> do you maintain physical and mental energies? I encourage you to keep on
> keeping on as you are an example!
>
> On Tue, Sep 8, 2026 at 7:42 AM Mayo Clinic Connect <
> nf+a523dc65+142857948@n1.hubapplication.com> wrote:
>
>> ## reply above this line ##
>>
>>
>> Mayo Clinic Connect
>> *Comment* posted by @arbez
>>
>> on discussion "Does anyone have Superior Canal Dehiscence Syndrome and fine
>> it severe".
>>
>> It is sometimes difficult to advocate for yourself, especially when
>> you're not feeling well. When doctors don't have answers or dismiss your
>> symptoms, be persistent. Find another doctor. Eventually you will find the
>> right one for you. I learned this when I had a complicated hip problem that
>> caused a lot of pain. I consulted over 30 doctors/NPs/PAs before I had
>> answers and was fixed correctly. At times I wanted to give up and am glad
>> my son pushed me to find answers. So here I am again with a different
>> issue. Today am seeing #9. I hope he can help. If not I'll ask him where to
>> go next. It's okay to take a break. Sometimes it's necessary for your
>> mental health. But don't give up.
>> VIEW & REPLY
>>
>> ------------------------------
>> Unsubscribe
>>
>> from this content and see links to review my email settings.
>>
>

Finally found a doctor who had a reasonable explanation for my symptoms (including the semicircular canal dehiscence). He believes it is an infection from my previous abscessed tooth and has started me on antibiotics. Hope you find the help you need. I have had trouble getting to doctors appointments especially those that are over an hour away. I had to have family take me. If you are having trouble getting to appointments maybe family can help you. Can also check with your church, local community services or even your insurance company. I maintain physical and mental energies by doing what I can, sometimes have to push myself. I lift weights (at home), read inspirational books, try to focus on things I am grateful for, etc. If you are feeling low on energy you may want to have your iron and ferritin levels checked to make sure they are ok. Look on the Internet on new guidelines for ferritin levels. I pray you find answers and the help you need.

I feel like celebrating you! I hope the dr and you will change all for
better health! I have followed the paths as you except wgt lifting.
Impressive. Have spine which needs fusion throughout. Wonder of cervical
spine may be causing pain in head but strange in one side….Let us know how
the meds help! I suspect it will take a while? But it is major the dr is
so knowledgeable! Proud of your perseverance! Let me know how u r doing
if that is ok by you! Of course📣📣👍👍
On Tue, Sep 8, 2026 at 4:36 PM Mayo Clinic Connect < nf+27eefc13+142974943@n1.hubapplication.com> wrote:

> ## reply above this line ##
>
>
> Mayo Clinic Connect
> *Comment* posted by @arbez
>
> on discussion "Does anyone have Superior Canal Dehiscence Syndrome and fine
> it severe".
>
> Finally found a doctor who had a reasonable explanation for my symptoms
> (including the semicircular canal dehiscence). He believes it is an
> infection from my previous abscessed tooth and has started me on
> antibiotics. Hope you find the help you need. I have had trouble getting to
> doctors appointments especially those that are over an hour away. I had to
> have family take me. If you are having trouble getting to appointments
> maybe family can help you. Can also check with your church, local community
> services or even your insurance company. I maintain physical and mental
> energies by doing what I can, sometimes have to push myself. I lift weights
> (at home), read inspirational books, try to focus on things I am grateful
> for, etc. If you are feeling low on energy you may want to have your iron
> and ferritin levels checked to make sure they are ok. Look on the Internet
> on new guidelines for ferritin levels. I pray you find answers and the help
> you need.
> VIEW & REPLY
>
> ------------------------------
> Unsubscribe
>
> from this content and see links to review my email settings.
>