Superior Semicircular Canal Dehiscence

Hello @freckleface! Thank you for starting this topic and Welcome! We are happy to have you here. I'm sorry you have been dealing with this.

Mayo Clinic Connect is the perfect place for you to connect with others on a similar medical journey. It always feels better to connect with someone who has "been there". Any information shared here will be of great help to another member some day.

I would like to introduce you to others that have experienced similar symptoms as dizziness. Please meet, @makenzie1, @ryman, @tomsaunders and @gailb. I hope they can share some tips on how they coped with the dizziness.

While we wait for others to join the conversation- here is one patient's experience called "Unraveling the Mystery of Semicircular Canal Dehiscence Syndrome" from https://sharing.mayoclinic.org/2013/01/15/unraveling-the-mystery-of-semicircular-canal-dehiscence-syndrome/

@freckleface, can you share a little more about yourself? How long have you been dealing with symptoms?

@freckleface, checking in on you. Any word on treatment options? Have your symptoms improved?

good afternoon/evening or morning I was just asked to share my experiences I am autistic but I have had a long term hearing issues from birth .I was a surfer coming from Australia and have had 17 operations on my left ear from tumor on the auditory nerve to realignment of the tympanic bones .I have had the ear drum replace twice grommets in the ear drum to bring air into the middle ear due to having a deformed Eustachian tube and ear canal .both very narrow and had the ear canal enlarged and sinuses fixed and polyps removed from nose .they have drilled out the mastoid and unable to restore hearing in the left ear.
I Have had balance issues for the last couple weeks infection and a small hole in the drum a condition we have been fearing is called Cholestoma excuse spelling I am Australian and they don't like English spelling. this condition occurs when the ear drum due to loss of air pressure because of problems in the Eustachian tube which connects to the back of the nose and throat .
The problem is the ear drum sticks to the inner wall of the middle ear and attacks the bone and will lead to bone death and that bone is covering a portion our brain tissue and can lead to brain infection .
the surgery is to remove the drum and repair the bone if one can that's up to the skill of the surgeon and probably thru either bone grafting or wire and cement and put in an donor eardrum or an artificial one . the other condition is called the dehiscence of the semi circular canal , this organ does 2 jobs it maintains the balance and spatial; and also when you move your head one doesn't get dizzy or permanently sea sick . now inside the semi circular canal is cilia hair with a crystal which sits on top and its the death of the cilia hair or the crystal which may have fallen off which is contributing to the fault balance and dizziness.
the hair waves and moves pushing the sound into the end of the canal and to the auditory nerve , and also maintaining balance amazing little devices . in terms of fixing this surgery by vistubila and or removing the balance organ and unsure if it can restore the hearing from this aspect and but it means that one is no longer sea sick and rely on the right ear to do the balance stuff .I would have it as agues its a couple hours in surgery length and in an American health system quite expensive and 4 weeks recovery and quite painful . in Australia and uk it comes under Medicare and NHS . I AM SEEING MY CONSULTANT PROF Kong ent IN 6 WEEKS and will know more then . I am a senior hospital scientist in children's oncology and a bio medical scientist andautistic

I hope this helps