SCDS-superior semicircular canal dehiscence

I want to raise awareness of a condition which is similar to MAV in terms of symptoms; superior, semicircular, canal dehiscence, here is the wikipedia article:

The article is not perfect, but if you have some of the symptoms listed there, and even more symptoms (not all of the possible symptoms are listed) you should have scds ruled out. If you have it it can be fixed with a surgery and nothing else.

There is also a supportforum for this: www.scdssupport.org
Health to you!

I agree it should be looked into, but be sure they see true dihiscence before deciding to have surgery…they just saw thinning of my bone and guessed that was causing all the MAV syptoms I was having…I had two major surgeries to resurface inner ears and I got no relief until starting to treat myself for MAV…do your homework, this suggested forum is a good place to start.

Yes, that is a really good point!
I wonder what is the mav-scds connection? So similar symptoms and you having mav when you have a thinning of the bone!!
Was there somebody else on the scds site who had a thin bone and a successful thickening of the bone?

I never saw a success story from repairing thinning…I sure wish I would have tried the approach of trying to treat myself for MAV before having the surgery, but I was so desperate and so miserable with life, I just wanted to try anything!

Any vestibular disorder causes almost ALL the same symptoms! Go to:

http://www.vestibular.org

and look at all the disorders and their symptoms. I don’t know how they EVER figure out which is which. I think I am STILL in denial that I have MAV. I just want to think it’s something else. I had a CT of my inner ear and they saw thin bone/what could appear as a pin hole in my semi circular canal but are ruling it out and sticking with MAV. I’m still gonna get a second CT just to make sure since I’m going through another “attack” after feeling decent for a year. I still sometimes think it’s SCD. But meds are a lot easier than surgery. Talk to your doctor a CT is what they do along with a couple vestibular tests.

Vestibular.org is ok, but the following website is great for sorting out differences between the different conditions:
dizziness-and-balance.com/di … index.html

Here specifically about scds:
dizziness-and-balance.com/di … at/scd.htm

SCDS is notorious for being missed on ct scans that are not done in the right way
Here about s ct scan done in the right way:

  • CT scan of the temporal bone, with high resolution (0.6 mm or less). Direct axial, with reformatted coronal and oblique views parallel to and perpendicular to the plane of the Superior Semicircular Canals.
DO NOT PROCEED If you cannot perform a CT scan of the temporal bone with a resolution of 0.6 mm or less. In this case, send the patient home so that an adequate scan can be done elsewhere.*

Scds is a hole in the temporal bone and will not heal of itself.
You might feel better in periods, but you will generally feel worse in a longer perspective
My son was so bad from this that he could not lift his head off the pillow for 4 months, and 1 weeks after his surgery all the symptoms were gone.
You will not know if you have scds unless you rule it out with the right type of a ct scan
Good luck everybody!

Wow arna, that is amazing about your son!!! Is he still feeling 100% better these days? Did he have the dehisence on one side or both? I assume these were clearly seen in his CT scan, right?

Yes, he is perfect.
Occationally he gets a headache (that’s why I peeped inn here) but it is unrelated to the ear.
He had hole only on one side.
It can be seen on a ct if it is done the right way (see instructions on a post abowe).
Best wishes for you all!

That is wonderful that he is completely cured!!! I was suspected of having a fistula, but unfortunately there is no perfect test to detect that. I did get the CT done though to rule out SCD. It is wonderful to hear a success story- whether it is mav or not!!!

— Begin quote from "AnneTimes2"

Notchoma: You and my daughter are on the same ride! My 13-yr old suddenly started with dizziness, imbalance, fatigue, etc. all balance-type symptoms. A CT scan showed thining of bones above the superior canal with possibly a hole on one side. The original VEMP test seemed to confirm a dehiscence on one side but the doctor called it inconclusive. I, too, went to the support website for SCDS, did all the reading, and made appointments to see Dr. John Carey (Johns Hopkins) and also Dr. Daniel Lee (Mass. Eye & Ear). To cut a long story short, both experts redid the VEMP with normal results. The hearing tests they did also had normal results so they agree that the symptoms are most likely migraine dizziness. My daughter tried cyproheptadine without any results and is now up to 60 mg of Topamax. She’s increasing by 15 mg every 2 weeks as she’s 13 yrs old. What med. worked for you? How long did you take the med. before it was effective? I’m encouraged at the number of people who have had success with Topamax, altho’ it may be making her a little nauseous at the moment. I’m really hoping it will be the one for her as she’s been experiencing 24/7 dizziness along with seeing things on a tilt/slant, fatigue, etc. for almost a year now. I really thought we’d found the source of her problems with the possible SCDS, but, like you, relieved that we don’t have to face that scary surgery! Dr. Carey wants my daughter to redo the VEMP test a year from now, though, to make sure the results are still the same.
Anne

— End quote

hi anne, i made an appt e dr carey myself. lol dont see him untill july. im not sure i will go or not. I think I may have even seen your post and you replied to me about MAV. I think over facebook? my dr put me on neuronton to treat anxiety and mav. good to know i should re do vemp in a year. that is very good advice. I do know that dr. carey points his patients to VM if there is only thinning (i know this through his secretary). I also know that he has everyone do the migraine diet. I have been on the meds now for about a month. They were working fine until yesterday. I had another bout when i went walking. The earth ws bouncing again with me. Then I had a stressful event with some interpersonal relationships and I was back at feeling like crap again. Hoping i get back to feeling a little better. I feel a little dizzy and nausea again.

This is exactly what my doctors all thought I may have in the begining. I went a normal ENT bc of having some humming and dizzienss. he did some tests that looked to him like it could be SCDS. This is where my whole ride started. After that he sent me for ct, well there it was a thinning of the superior canal present with out dehiscence, but apparently you still need to get more tests to rule it out bc there could still be a small hole that is now showing on ct. so then i went to nuerotologist at U of M. i did vemp, VNG, ecog, all of it plus another ct, that showed normal thinning. Anyway none of it showed i had a hole and thinning seems with in limits.

notchoma what does u of m stand for? did you go to the university of maryland by any chance?

Sorry no, University of Michigan. U of M. :slight_smile:

Notchoma: You and my daughter are on the same ride! My 13-yr old suddenly started with dizziness, imbalance, fatigue, etc. all balance-type symptoms. A CT scan showed thining of bones above the superior canal with possibly a hole on one side. The original VEMP test seemed to confirm a dehiscence on one side but the doctor called it inconclusive. I, too, went to the support website for SCDS, did all the reading, and made appointments to see Dr. John Carey (Johns Hopkins) and also Dr. Daniel Lee (Mass. Eye & Ear). To cut a long story short, both experts redid the VEMP with normal results. The hearing tests they did also had normal results so they agree that the symptoms are most likely migraine dizziness. My daughter tried cyproheptadine without any results and is now up to 60 mg of Topamax. She’s increasing by 15 mg every 2 weeks as she’s 13 yrs old. What med. worked for you? How long did you take the med. before it was effective? I’m encouraged at the number of people who have had success with Topamax, altho’ it may be making her a little nauseous at the moment. I’m really hoping it will be the one for her as she’s been experiencing 24/7 dizziness along with seeing things on a tilt/slant, fatigue, etc. for almost a year now. I really thought we’d found the source of her problems with the possible SCDS, but, like you, relieved that we don’t have to face that scary surgery! Dr. Carey wants my daughter to redo the VEMP test a year from now, though, to make sure the results are still the same.
Anne

Wow Anne good for you you had your daughter see AMAZING Drs.!!! I was actually going to see Dr. Lee myself but ended up seeing Dr. Santos at Mass Eye and Ear who was also great. I hope your daughter does well on topamax it seems to work really well for others!

Kopied from scdssupport.org :
Below is an abstract of a paper due to come out in April re thinning bones.

Near-dehiscence: Clinical Findings in Patients with
Thin Bone Over the Superior Semicircular Canal
Bryan K. Ward, MD; Angela Wenzel, MD; Eva K. Ritzl, MD
Sergio Gutierrez-Hernandez, MD
Charles C. Della Santina, MD, PhD
Lloyd B. Minor, MD; John P. Carey, MD

Objective: To determine whether patients with thin bone over the superior semicircular canal can develop signs
or symptoms of superior canal dehiscence syndrome (SCDS).
Study Design: Retrospective case series
Setting: Tertiary referral center
Patients: All patients from our institution found to have thin but not frankly dehiscent bone over the superior
canal despite symptoms and signs of SCDS.
Main outcome measures: Pre-operative CT imaging, symptoms, audiometry, vestibular evoked myogenic
potentials (VEMP), and intraoperative electrocochleography (ECochG) results were reviewed. Symptoms were
assessed at least 1 month post-operatively in all patients, and post-operative physiologic data are presented when
available.
Results: 10 patients (11 ears) had thin bone over the superior semicircular canal at surgery. All presented with
autophony or sound- and/or pressure-induced vertigo, in addition to at least one physiologic measure consistent
with SCDS. CT imaging was read as showing either dehiscence (36%) or marked thinning of bone overlying the
affected canal (64%). Pre-operative median low-frequency air-bone gap (ABG) was elevated (10.9 dB,
Interquartile range [IQR] 8.8-12.5), with 4 patients demonstrating negative bone conduction thresholds. Patients
had elevated oVEMP amplitude (median 20.7, IQR 6.7-22.1) µV and ECochG SP/AP ratios (median 0.59, IQR
0.54-0.67). Post-operative ABG and SP/AP ratio decreased significantly compared to pre-operative values
(p<0.05), and all patients reported symptomatic improvement.
Conclusions: Symptoms typical of SCDS can occur in cases with thin but not dehiscent bone. Surgical plugging
or resurfacing can reduce symptoms in such cases.
Define Professional Practice Gap and Educational Needs: Lack of contemporary knowledge of the clinical
findings and post-surgical outcomes of patients with thin bone over the superior semicircular canal.
Learning Objective: Understand clinical features that distinguish patients with near-dehiscence syndrome from
those with superior canal dehiscence syndrome (SCDS).
Desired Result: Appreciate that some patients with signs and symptoms consistent with SCDS may have thin
bone over the superior semicircular canal and that pre-operative findings and post-operative outcomes may differ
from patients with classic SCDS.

— Begin quote from "Arna"

Kopied from scdssupport.org :
Below is an abstract of a paper due to come out in April re thinning bones.

Near-dehiscence: Clinical Findings in Patients with
Thin Bone Over the Superior Semicircular Canal
Bryan K. Ward, MD; Angela Wenzel, MD; Eva K. Ritzl, MD
Sergio Gutierrez-Hernandez, MD
Charles C. Della Santina, MD, PhD
Lloyd B. Minor, MD; John P. Carey, MD

Objective: To determine whether patients with thin bone over the superior semicircular canal can develop signs
or symptoms of superior canal dehiscence syndrome (SCDS).
Study Design: Retrospective case series
Setting: Tertiary referral center
Patients: All patients from our institution found to have thin but not frankly dehiscent bone over the superior
canal despite symptoms and signs of SCDS.
Main outcome measures: Pre-operative CT imaging, symptoms, audiometry, vestibular evoked myogenic
potentials (VEMP), and intraoperative electrocochleography (ECochG) results were reviewed. Symptoms were
assessed at least 1 month post-operatively in all patients, and post-operative physiologic data are presented when
available.
Results: 10 patients (11 ears) had thin bone over the superior semicircular canal at surgery. All presented with
autophony or sound- and/or pressure-induced vertigo, in addition to at least one physiologic measure consistent
with SCDS. CT imaging was read as showing either dehiscence (36%) or marked thinning of bone overlying the
affected canal (64%). Pre-operative median low-frequency air-bone gap (ABG) was elevated (10.9 dB,
Interquartile range [IQR] 8.8-12.5), with 4 patients demonstrating negative bone conduction thresholds. Patients
had elevated oVEMP amplitude (median 20.7, IQR 6.7-22.1) µV and ECochG SP/AP ratios (median 0.59, IQR
0.54-0.67). Post-operative ABG and SP/AP ratio decreased significantly compared to pre-operative values
(p<0.05), and all patients reported symptomatic improvement.
Conclusions: Symptoms typical of SCDS can occur in cases with thin but not dehiscent bone. Surgical plugging
or resurfacing can reduce symptoms in such cases.
Define Professional Practice Gap and Educational Needs: Lack of contemporary knowledge of the clinical
findings and post-surgical outcomes of patients with thin bone over the superior semicircular canal.
Learning Objective: Understand clinical features that distinguish patients with near-dehiscence syndrome from
those with superior canal dehiscence syndrome (SCDS).
Desired Result: Appreciate that some patients with signs and symptoms consistent with SCDS may have thin
bone over the superior semicircular canal and that pre-operative findings and post-operative outcomes may differ
from patients with classic SCDS.

— End quote

than you arna, i saw this on the support group of scds. this makes me very happy as i have hope to get surgery and hopefully get this fixed. i honestly feel like this is my problem and the ct scan shows thinning. i am crossing my fingers in july when i see dr. carey, and i think this was his publication. :slight_smile: so happy to know they are doing this.

Did you all consider the possibility of scds and have had it ruled out?