# Potential Superior Canal Dehscience Diagnosis after 4.5 years. **URL:** \ **Category:** Uncategorized\ **Created:** [November 2, 2026, 9:07pm UTC](https://mvertigo.org/t/potential-superior-canal-dehscience-diagnosis-after-4-5-years/26240 "2026-11-02T21:07:44Z")\ **Posts on this page:** 2\ **Page:** 1
**Author:** ![DizzyandConfused](https://mvertigo.org/letter_avatar_proxy/v4/letter/d/bc79bd/32.png) [@DizzyandConfused](https://mvertigo.org/u/DizzyandConfused)\ **Post date:** [November 2, 2026, 9:07pm UTC](https://mvertigo.org/t/potential-superior-canal-dehscience-diagnosis-after-4-5-years/26240/1 "2026-11-02T21:07:44Z")
Its been nearly 18 months since my last post and a lot has happened. I got a very severe, life threatening bout of pneumonia in December 2025 and ended up on a ventilator and a week’s ICU stay. Whether it was the bombardment of drugs I received or not I noticed an improvement in balance issues, which continue to fluctuate. I was referred back to ENT in July last year after both Neurologist and I agreed VM wasnt my problem ( which I’ve maintained since day 1). He did try and push PPPD diagnosis but I’ve never bought that either. The ENT doctor I saw in June 2026 agreed to do CT scan of my head, which is the gold standard for Superior Canal Dehscience Syndrome or SCDS. Had the scan in July. Had follow up appointment today where I saw a different ENT doctor. In my scan there is a strong suspicion of right sided SCDS, they need a senior head and neck radiologist to confirm the diagnosis but my balance issues, disequiblibrium, autophany, hyperacusis, extremely acute hearing and being able to hear blinking, eyeballs moving are classic and specific SCDS symptoms. If diagnosis is confirmed then I will need to weigh up pros and cons of complex, invasive surgery to plug the hole or thinned bone. However SCDS surgery can have serious complications like permanent hearing loss, so not a light decision. I’m in UK so will need to travel to somewhere like Oxford for surgery as my local hospital doesnt offer it due to specialist nature of the procedure. After 4.5 years of going down rabbit holes, false or inaccurate diagnosis, trying numerous medications, paying for private tests due to NHS limitations, vestibular physio, being dismissed and in some cases gaslit by certain doctors I might actually have some indication of what is wrong. This is very vindicating as I always argued against VM/ MAV label. It just didnt feel right. And the very numerous anti migraine drugs I tried, including CGRP injections, only added to this feeling. As if it truly was VM then something should have worked. I guess the moral of the story is keep pushing, if you get diagnosed with something and the treatment isnt working then be open to the possibility its something else. Doctors arent infallible and many rarer conditions take time ( too much) to diagnose. Be prepared to advocate for yourself cos no one else will. Doctors have a tendency to diagnose people with the most likely conditions, without always looking further afield. In many cases it will be right but there are always exceptions to the rule. This condition has taken a really heavy toll on my physical and mental health. I’ve doubted myself so many times and wondered if I was going crazy or imagining symptoms. SCDS is very commonly misdiagnosed as VM and I’m pretty annoyed that the autophany and hyperacusis I experience were just dismissed. I even got told it was anxiety. Even though the news isnt great at least I now have a good idea of what the problem is and I can leave the whole VM/ PPPD rabbit hole behind me. Hope its ok to post a new post and to let you know my news. Hope everyone is doing as well as they can do. ---
**Author:** ![ander454](https://mvertigo.org/letter_avatar_proxy/v4/letter/a/9e8a1a/32.png) [@ander454](https://mvertigo.org/u/ander454)\ **Post date:** [November 4, 2026, 3:26am UTC](https://mvertigo.org/t/potential-superior-canal-dehscience-diagnosis-after-4-5-years/26240/2 "2026-11-04T03:26:12Z")
> [@DizzyandConfused](#): > > I guess the moral of the story is keep pushing, if you get diagnosed with something and the treatment isnt working then be open to the possibility its something else Yep, but at the same time try not to be obsessed and fearful… easier said then done right? I’m so glad you found an answer and thanks for letting us know the news! Keep us updated on if you go through with the surgery (or not).