Finding the doctor with the most experience in your disorder is key
I started having extreme dizziness and vertigo in the Spring of 2109.
I was originally diagnosed with BPPV but nothing was making my dizziness better. I also noticed a high sensitivity and vertigo when loud noises occurred and certain tones of noise, i.e., lawn mowers, snoring. My doctor referred me to an ENT which I had to wait 6 weeks to get in to. The ENT ordered hearing, VEMP testing and a VNG. My VEMP testing came back indicative of SCDS on my right side. He then ordered a CT scan. The radiologist that read the scan did not see anything on the CT to validate the VEMP results. My ENT said that since SCDS is so rare, a lot of radiologists miss seeing a dehiscence. He then referred me to a neurotologist (another 6 week wait). At this appointment this doctor was able to see the dehiscence on the CT.
Without knowing much at all about the rarity or anything else about SCDS, when he suggested a surgery where they fill the hole I thought absolutely…anything to make me feel better. He did explain that he did the less invasive approach which cuts behind the ear instead of a craniotomy. I had that surgery in October of 2019. They did not plug my canal but did attempt to fill the hole with cartilage from my earlobe.
I knew by the beginning of the following year that the surgery was not successful. My dizziness was slightly better but now I had complications from going through my mastoid that created a lot of hearing problems and strange sensations such as microphone ear. I also had an increase in auditory symptoms like hearing my heartbeat, footsteps, and ear fullness. I started to do my own research and found a support group on Facebook that was amazing.
With research I found out that there are 3 doctors in the United States that are very well known experts on SCDS and do a large number of surgeries a year for the condition. I decided on a doctor at Johns Hopkins and waited 8 months to see him (hard to get into and COVID delays). He repeated testing and did an exam and felt that he could help me with an additional surgery. After another wait, 8 more months (May 2021), I had a craniotomy to repair the dehiscence and plug the superior canal. He also went back through my mastoid to repair my mastoid and to remove some debris stuck to my stapes from my first surgery. My hearing improved and my auditory symptoms resolved. I still am prone to BPPV but it is mild and easily responds to the Epley.
My advice to SCDS patients is to do their research on doctors. I really wish I had known about the doctor at Johns Hopkins initially but I am so happy with my end result. I will be monitored at Hopkins since I am bilateral but at this time not symptomatic on my left side.