I’ve been trying to figure out how to write my end of the year review and I have no clue how to even begin or where to begin. I don’t even think this is an end of the year review as much as it is an account of how things happened this year. By this time last year, I was already exhausted and excited from all the concerts I’ve covered, bands I’ve met, and interviews I’ve done. This year I only covered two live shows and lets not even get into photography work as I could not do much this year at all because I was so sick. In a way, I’ve had to swallow my pride not being able to do what I love the most, music and photography. I missed a lot of great opportunities and it’s not easy seeing things you love going past you. For four years I’ve been struggling with seizure like migraines called hemiplegic migraines that would leave me bedridden for days. Early this year I noticed my symptoms were getting significantly worse. I was having a really hard time driving, I was misspelling easy words and missing words from my articles and emails, my vision was getting really bad, and I was starting to slur my speech more than usual. The effects of my severe migraines seemed to be permanently affecting me as every attack took longer to recover from.
In June, after a week long severe attack of vertigo and mentally surviving a slew of never ending tests, I was finally diagnosed with a very rare vestibular disorder called SSCD, Superior Semi-circular Canal Dehiscence. SSCD is an opening or thinning of the inner ear wall that causes sensitivity to sound and balance. Having only been discovered in 1998, SSCD is considered a new syndrome and it affects only 1%-2% of the population. I knew something was really wrong when my first ENT visit lasted four hours. I have to really give credit and my biggest blessing to him because he was the first proactive doctor to finally connect all the dots with my symptoms. I remember sitting in his office hearing him tell the secretaries, and nurses that I was a serious case and to interrupt him between patients as soon as the calls he was desperately making were being returned. The calls he was making were to one of the top otolaryngology and skull base surgeons in the East Coast who has been doing research and had experience doing surgery on this new disorder. I was lucky that he managed to fit me into his busy schedule and so I moved on to the surgeon who confirmed the SSCD diagnosis
The test that confirmed my SSCD was a temporal bone CT scan which showed that I had the degenerative disorder on both ears. I have to admit that by this point I was feeling a little bit like a freak, and all I kept saying to myself through this whole process was “please don’t let it affect my photography”. SSCD is a condition that I was born with and as years went by the inner ear walls began to deteriorate developing holes. Trying to do research and learning about this condition was a task because not a lot is known about SSCD and because it’s such a rare disorder there is not much of a support outlet. After four years of being misdiagnosed with debilitating migraines, a few visits to the ER, getting the wrong head scans, and taking unnecessary medications, I was relieved I finally got an answer. Due to the severity of my condition the only option for me was a craniotomy. Never in my wildest dreams did I ever expect brain surgery as a chapter in my life so on October 2nd I went through with the procedure. To get to the inner ear the doctor had to cut through the skull and expose part of the lower brain. To keep the brain from swelling they had to catheterize me to relief me of any fluids that would cause the brain to swell while it was exposed. My doctor also had to cut through the jaw in order to get to the area to proceed with the surgery. After a brand new screw to secure the section of my skull back into place and a mesh to connect my jaw back to it’s original location, the procedure was finally completed after 3 1/2 hours.
This entire year was pretty much battling pain in one way or another and being scared of my future for half the year. It’s been six months and I am still on disability. I am not recovered and I am not sure If I will ever go back to being normal, only time, my body, and therapy will tell. All I can say is that my brain is being really stubborn at recovery. I am going through physical therapy-improving in some areas and not in others. With my disorder I am also medically not allowed to drive until my vertigo improves and in any other country, my license would have been revoked already with my disorder. I still get vertigo spells every day each time I move my head. Tonight, I fell backwards hard against the floor bending over to give my son a kiss good night because my balance is still pretty bad.
I’m not sure where 2018 is going to take me but I hope it’s not going to take me on another freighting ride. It’s hard depending on others and I’ve already lost so much of my freedom. I sincerely do not see myself driving any time in my near future and from what my husband has seen, he is betting on another year to get my vestibular function back to a safe level of independent freedom. For now I have a great support system in my family and my closest friends. After being misdiagnosed for four years by so many doctors I learned that the medical field is terrible at recognizing and diagnosing vestibular disorders. The vestibular system is highly neglected in the medical profession. Awareness is key! If you are suffering from migraines, dizziness, along with fullness or pressure in your ear please do not ignore the symptoms. Be proactive and let your doctor know that it may be more than just a migraine, anxiety or stress. It should never have taken me four years to be properly diagnosed and it has become my mission to bring awareness to this disorder. This November I became a member of the ambassador board for a great vestibular disorder organization called VeDA so that I can help spread awareness about my syndrome and other vestibular disorders. Through VeDA I found the support system I was looking for to understand more about my rare disorder and found the answers to many of my questions. To learn more about VeDA and other vestibular disorders please go to www.vestibular.org