Paul is only 45 years old and has been battling a rare condition known as Semicircular Canal Dehiscence Syndrome (SSCD) for the better of two years. Now I’m sure you’re all wondering what that is?
Well in just a second I am going to share my husband’s story with you. But before I do I would like everyone to know this is our first GoFundMe page so bare with us. We always like to help out when we can. But never once thought we would be the ones needing help. At this point we are exploring all possible options to help get past this difficult time.
We understand that there is a surgery that can correct this condition, However not everyone qualifies as it can be quite complicated. Wait times to get the surgery are estimated to be upwards of a year. For Paul, each day can be quite the challenge. He wrote a bit about what this condition feels like in the hopes of helping others understand the dramatic effect it can have on your life and that maybe help others who are suffering the same the same symptoms. The funds, that we may be so fortunate to acquire, will be used in effort to assist Paul in making ends meet through the surgery and rehabilitation time. At this point Paul’s condition has progressed rapidly resulting in his inability to work full time. Currently we are looking into seeing a doctor who specializes in SSCD but he is located in Montreal, Quebec. Quite a fair distance from our home in Alberta and flying within Canada is surprisingly expensive.
Thank you for taking the time to read our story and learn a little more about SSCD. Our aim is to bring awareness to the syndrome and know that any donation would mean the world to us.
And now….Here’s Paul’s Story.
SSCD, a medical rarity, an often misdiagnosed syndrome, a very tiny defect in the skull...and a living nightmare.
Up until a year ago, I had never heard of a Semicircular Canal. Most of us haven’t so for those who don’t know, it’s a small, bony structure in the skull comprised of 3 fluid filled loops that make up the middle ear. They are oriented in right angles to each other that tell your brain how you are positioned in the space around you. There is the Horizontal (lateral), Anterior (superior) and Posterior (inferior) Semicircular Canals. Each canal detects different head movements when the fluid in these canals stimulate a structure named the cupula which contain hair like cells and convert the momentum into nerve impulses that gives you brain a sense of spatial awareness. If you can nod your head up and down, turn it left to right and tilt it side to side and still maintain balance, you have those to thank for it.
SSCD, or Superior Semicircular Canal Dehiscence is a condition in which the bone covering the top of the Superior Canal deteriorates exposing a hole into the brain cavity. It can be caused by trauma but in most cases, it is thought to be congenital as the bones in the skull form up after birth. Sometimes, that bone forms thin and as one ages, it becomes thinner. It is extremely rare, it’s a very small hole and it will absolutely decimate your life.
I was about 43 when the symptoms first made their appearance. They were subtle and gradual, I had no idea they would eventual bring me to the edge of debilitation. Aural fullness was the very first indicator that something wasn’t quite right. I noticed that when I showered the water kind of echoed off my head. Almost like when you get water in your ear at the pool. This started happening daily and I was confused as I couldn’t believe I forgot how to shower without getting water in my ears! Then that feeling started occurring outside of the shower but it felt more like being at altitude. I would constantly stretch my jaw and plug my nose and blow desperately trying to get them to pop. They never did. I even purchased a $150 device called an Ear Popper mostly used by divers and people who fly a lot. It would blast air into the Eustachian tube and try to equalize pressure. It didn’t work.
My second symptom was hollow breathing. With each breath I drew I could hear the air rush through my left nasal passage and back out again. Imagine sort of a Darth Vader breathing noise in your head every time you inhale and exhale. Not congested by any means, just “hollow”. A visit to the doctor resulted in steroidal nasal sprays and saline nasal rinses. It’s didn’t work.
Pulsatile tinnitus was the third system and it came on shortly after. The sound of my own heartbeat whomping in my left ear would occur usually when my heart rate increased. Walking, moving around, any kind of activity would unleash this beast in my head. Again, subtlety at first but as time progressed it became louder and more frequent. I just thought I was really out of shape as something as simple as getting up to get a drink would result in a constant and relentless “Whoomp! Whoomp! Whoomp! In my ear. At least, it would end up happening without any kind of activity at all. Just there, all the time. Up until this point, about a year after onset, I had believed this all to be in my head. That I was imagining these oddities. No normal person hears this stuff and if they did, they didn’t talk about it. I had never heard of anyone having such issues. Was I going crazy? I had to finally tell the only person who I know would never judge me, my amazing wife. Another visit to the doctor had me prescribed Ativan, an anti-anxiety medication used to calm you down and ease my heart rate. It didn’t work.
My fourth symptom came on quickly and it was the true indicator that something was wrong, My own voice became louder and sort of distorted. At first it was certain words that would set it off. Long words with lots of “e”s and “o”s would cause a strong vibration that could be felt across my nose, forehead and occipital bone. Now, every word sends what feels like an electric shock directly to my brain. Although I still had the ability to speak, I eventually lost the desire to. I was prescribed anti-depressants and referred to an ENT( ear, nose, throat) specialist. That resulted in a Myringotomy, a tube place in my eardrum to drain fluid from my middle ear. Problem was, there was no fluid and it created another hole in my head. It was awful and I had it taken out a week later. It didn’t work.
With so many internal noises going on in my head, it was becoming difficult to discern what action caused what noise. There was one noise that was constant and proved to be the trickiest to find. A sort of rubbing noise, like rubber bands being stretched and twisted. Always there but no clue as to where it was coming from. One night I sat very still in my chair, slowed my breathing, calmed my pulse, didn’t move a muscle and listened. It was still there and I soon realized that it was the sound of my left eye looking around the room. My fifth symptom, and with each eye movement, I would hear this awful sound.
Ah, now let’s not forget Vertigo, my sixth symptom and one of the worst. You would think that a hole in the vestibular system would cause some dizziness and boy, it sure does. With that fluid in the canal leaking out, subtle head movements started causing an unsteady sensation that made me nauseous. Even driving on a bumpy, snow covered road lead to dry heaving. With each movement a wave of tingling numbness swept through my brain. Have you ever bumped your head really hard, so hard you see stars and actually feel ill? I felt that without the head trauma and pain part. I now take anti nauseants to help with the balance issues. I don’t think they work.
SSCD has completely impacted and ruined every aspect of my life. I can no longer sit and visit with friends and family, go out to public events, enjoy a movie, do any recreational activity and work is becoming increasingly difficult. I fear I may not be able to effectively do my job soon.
There is a big difference between being alive and having a life. Having a pulse and breathing constitutes being “alive”. Creating memories with loved ones, experiencing the wonders of the world and enjoying your time on earth constitutes having a life. SSCD won’t kill you, but it essentially ends your life. Every day becomes one of existence but that’s it.
So here I sit, two years after onset, feeling the cold, lonely grip of depression and despair slowly wrap its icy grip around me. I live in headphones as I find it is my only relief from this awful condition. The music being pumped directly into my skull seems to trump the autophony and helps keep the vertigo at bay. I’m not sure how it helps, but it does. A real life “Baby Driver” if you will. A movie about a getaway driver who must wear earbuds constantly to combat his tinnitus from a car accident when he was young. After seeing the film, my wife asked if I thought it might help me. Being so sensitive to sounds, the thought of blasting music in my head was ridiculous. Desperation tends to override rationale. So one night, my wife peacefully sleeping in the bedroom, I grabbed a set of earbuds, fired up my Spotify and let the music play. After 20 minutes I took them out, took a deep breath and began to sob uncontrollably. Tears of joy. Tears of relief. Tears of hope. For 20 minutes, I was able to escape the horrors of this condition. All I could hear was the music. Despacito never sounded so good. It was scratching an itch in my brain that for two years, I was unable to scratch. So now I fight through with my beautiful bride by my side but it sadly is taking its toll on her. A woman who has the most amazing smile and a laugh that can light up room is now a face of concern and worry. It truly breaks my heart to see such a pretty face devoid of any joy.
She has done her fair share of research and knows more about SSCD than 90% of the medical professionals out there. The fact that it is so rare and misunderstood is frustrating and disheartening but with her by my side, I feel I’m in good hands.
Please share this post to any and all. Hopefully it can help others out there suffering in silence, not knowing what is happening to them. SSCD is real, it’s debilitating and it must be brought into the collective knowledge of the medical community. Nobody should ever have to live with these terrible symptoms and maybe by spreading the word, more doctors will learn the techniques used to treat and heal it.
Sincerely Paul and Crystal Chausse xoxoxox