Journal

My Not So Year in Review and SSCD Diagnosis

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

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Thank You, Adam Ant

When your childhood crush posts your review as “Outstanding” truly makes the hard work worth while.

Thank you Adam Ant, you are truly “wonderful”.

Adam Ant Facebook Andrea Ramirez Maciolek

 

 

2016 Best New Band, The Shelters

Last year I had the best live show of 2015 which went to Vintage Trouble for their incredible and vivacious stage performance. This year I am naming a best new band because I sincerely believe these guys deserve it. I  was impressed by the music and their great stage presence when I covered the Alt Nation Sirius XM tour  for Rock at Night. Their sound is vintage modern rock and I found myself playing their album non-stop. Every song delivers the spirit of a retro sound and they totally deserve my Best Of category. Who can’t resist the sound of a solid Rickenbaker and Gretsch! It is also no surprise that the band’s first self titled album was produced by Tom Petty.

Support great music and listen to The Shelters, these guys truly deserve it!

My Year in Photos

2016 has come to an end! This is a video I created of my 2016 year in event photos.  It was another AWESOME year shooting live concerts, and interviewing some of today’s top rock bands. A big BIG thank you goes out to my editor and big chief at Rock at Night.  Thank you for believing in me and for your amazing support. I could not have done all this hard work without you. I also had an amazing time shooting the talented performers of one of my most favorite events of the year, the PA Burlesque Festival, what a great and impressive show. Shooting Fashion Week runway shows is always a glamourous experience.  I had a TON of footage to select from in order to fit my favorite song, Stormur by Sigur Ros. I could have added many more photos but I couldn’t make this video much more painfully long.  The life of a music journalist and photojournalist is not easy. We have day jobs along with our media careers. My days sometimes start at 5am and end at 1am, thats 20 hrs of non stop dedication to our families and our passion. In addition to that, there is never ending photo editing, emails…lots and lots of emails , writing our articles, and researching music history, checking out new bands, reviewing albums, and thinking of good questions to ask on interviews. I LOVE my job. Thank you all who make my incredible life so wonderful by giving me the opportunity to work with you. I created this video all on my iphone with free apps and lots of love, sweat, and F-letter words :) Happy Holidaze and Happy New Year

Check out my photos on the Sigur Ros website

I’m a little behind on updating my website since I’ve been extremely busy on assignments. Here is a link of my photos that the ultra popular Icelandic band, Sigur Ros, kindly put on their website. Here is the direct link . The link was also included on their Instagram account, yay :)

Sigur Ros photos by Andrea Ramirez Maciolek

Sigur Ros Photos by Andrea Ramirez Maciolek

 

Interview With Martin Barre of Jethro Tull

A few weeks ago I had the incredible honor of interviewing legendary guitarist Martin Barre of Jethro Tull for Rock at Night Magazine.  Here is a link to the audio:

Chatting with guitar legend Martin Barre

 

Philadelphia Fashion Week

This year, Philadelphia Fashion Week topped its previous runway shows with amazing talented designers and its brand new home at 2300 Arena. In attendance was the iconic fashion guru and creator of New York Fashion Week, Fern Mallis, mentoring the designers before the shows. Below are some of my photos from the runway.

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Creator of NY Fashion Week, Fern Mallis

 

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Designer: These Pink Lips

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Designer: These Pink Lips

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Designer: These Pink Lips

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Designer: Thomas Lavone

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Designer: Thomas Lavone

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Designer: Briana Eliza

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Designer: Burning Guitars / Model: Trayce Shaw

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Designer: Burning Guitars

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Designer: Lillie Designs

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Designer: Lillie Designs

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Designer: Lillie Designs

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Designer: Lillie Designs

 

 

 

 

Best Live Show of 2015, Vintage Trouble

Ramirez Maciolek Nalle Colt vintage trouble

Nalle Colt, Guitarist of Vintage Trouble and me :)

Happy New Year everyone! I’m a bit late posting the best live show I

attended in 2015 but here it is.

2015 was an extremely busy year photographing  live bands and festivals.

It’s a lot of work dealing directly

with record companies and band management, but one band and

coincidently  their management  stood out from the

rest. McGhee Entertainment  were incredible to work with and it is no

surprise that the band Vintage Trouble, under the same  management,

won my choice for best live performance of 2015. The guys of Vintage

Trouble are incredible live. If you are looking for a great show to attend these guys are the ones you must experience

live. Full of energy, and incredibly talented Vintage trouble will not disappoint, they are a must see!!

Below is a video of Vintage Trouble from their David Letterman performance.

 

 

The Photo Pit

Hi everyone,

This is a look into the concert photo pit. The photo pit is a place for approved photographers

to shoot the bands up close and personal away from the rest of the audience. I took this video

at the brand new Fillmore in Philadelphia. Luckily there were only about 5 of us at the pit

which means more room to move around.

It is such an incredible energy to be that close to the action.

 

Let’s Rock and Roll!

This year I was welcomed as the new correspondent of an amazing international music magazine called

Rock at Night. I am proudly representing an outlet of talented music journalists and photographers.

Chyrisse, you are an amazing and fantastic editor! Proud to be part of the family.

 

Andrea Ramirez Rock at night journalist