Thank you for sharing your story. I was diagnosed with SCDS on the left side in 2011 at Allegheny Hospital in Pittsburgh, PA. I have just this week been scheduled for a middle fossa craniotomy because I can't stand the dizziness, fatigue or how my active life has changed because of this condition. I tried to learn to live with it and take meds for the dizziness, but the condition has progressed and another option had to be explored. I have 6 grandchildren and a great family and want to enjoy all the time I can watching my grand babies grow up without the limitations SCDS puts on your daily activities. I'm very optimistic and now that I've made the decision to "take my life back", am praying for a successful resolutiin, or some improvement in my life.
Cindy S
Cindy S
Loading...
How can I get in touch with you?? I was just told I have this syndrome (was result of a cat scan checking for something else...) and my doctor didnt even mention surgery as an option.
Loading...
Hi there - I was diagnosed this six years ago (in both ears) and had surgery on my left ear in 2012! Although the surgery was successful to the surgeon, to me it was not! I have lost some of hearing, have tinnitus in that ear and my head is foggy and dizzy a lot of the time! I am sure there are some successful cases, but please do your research before commiting to surgery (I would not have had this done if I had known how it would make me feel - and it is getting worse as I get older) BUT, I must add that I have intercraniel pressure levels, which it may have irritated!
Loading...
It's been over a year for you now, how is it going? Are you feeling better? I was just diagnosed this week and have barely started researching what this is. I don't know about surgery yet, if it will be for me. What do you think of it for yourself?
Loading...
Hi there,
my name is Sebastian, 36y, laser lab application engineer, living in germany.
I was diagnosed bilateral scdd during spring time this year. Living with all of the typical symptoms for years. I don't know how, but the most of them I ignored, was too busy to get ill :)
But the last 12-18 months my condition got worst due to the bunch of symptoms.
My ENT doc was putting me on to the burn out train, but I was self reflecting that this was not true and not the root cause of my condition. So I have asked for a CT temporal bone, bam, bilateral scds.
I'm living near by a big and respected university in lower saxony.
I underwent a capping surgery (left side) through middle fossa aproach in July. But sadly without a result. luckily not worse than before. nothing, no changes (except that my skull was opened and my brain was lifted and so on... still a strange feeling below my skin).
Question:
The next step is: Plugging through mastoid by another specialist in Berlin in December 2021. Not so far away... the date.
And I am wondering on which side I have to choose for the next "try".
At some papers I read something like "If there was a SCDS surgery on that side in the past, the risk is higher to blabla". On the other hand side I read "Capping/roofing AND plugging will bring the best result".
Symptoms are absolutely symetrical in my head. No difference since the capping surgery 3 months ago.
So, should I do left side again or the right? Any experienced people here?
2nd question:
I am expecting a strong shift of the symptoms to the other side after the plugging. I image that this will be make my DHI worse until the second side is plugged. I am right? Any person here with two sides plugged?
And sorry for the grammar.. cheers to all scds patients.
Sebastian
my name is Sebastian, 36y, laser lab application engineer, living in germany.
I was diagnosed bilateral scdd during spring time this year. Living with all of the typical symptoms for years. I don't know how, but the most of them I ignored, was too busy to get ill :)
But the last 12-18 months my condition got worst due to the bunch of symptoms.
My ENT doc was putting me on to the burn out train, but I was self reflecting that this was not true and not the root cause of my condition. So I have asked for a CT temporal bone, bam, bilateral scds.
I'm living near by a big and respected university in lower saxony.
I underwent a capping surgery (left side) through middle fossa aproach in July. But sadly without a result. luckily not worse than before. nothing, no changes (except that my skull was opened and my brain was lifted and so on... still a strange feeling below my skin).
Question:
The next step is: Plugging through mastoid by another specialist in Berlin in December 2021. Not so far away... the date.
And I am wondering on which side I have to choose for the next "try".
At some papers I read something like "If there was a SCDS surgery on that side in the past, the risk is higher to blabla". On the other hand side I read "Capping/roofing AND plugging will bring the best result".
Symptoms are absolutely symetrical in my head. No difference since the capping surgery 3 months ago.
So, should I do left side again or the right? Any experienced people here?
2nd question:
I am expecting a strong shift of the symptoms to the other side after the plugging. I image that this will be make my DHI worse until the second side is plugged. I am right? Any person here with two sides plugged?
And sorry for the grammar.. cheers to all scds patients.
Sebastian
Loading...