I am thrilled to be joining the Mass Eye and Ear team as part of their 2020 Boston Marathon Team in order to raise necessary funds and awareness.
I am running in honor of my wife, Jill. We met at a local gym and over the years got to know each other through our participation in various types of races and athletic events. We loved travelling to and competing in obstacle course races that involved activities such as swinging from ropes or bars, climbing high objects, carrying heavy objects, jumping over items as well as scaling up and down mountains and through the woods with varying altitudes.
Over the last few years, Jill started to suffer from continual dizziness and balance issues ranging from mild to severe, often times causing her to be very sick and off her feet for varying amounts of time. For almost a year, it was diagnosed and treated as vertigo until it was determined that typical treatments were not working. We were sent for a CT scan.
The results of the CT scan revealed that Jill suffers from a rare condition called Superior Semicircular Canal Dehiscence Syndrome (SSCD). SSCD creates a tiny hole in the bone that separates your ear canal and your brain which negatively affects balance, hearing, vision and the vestibular system in general. It is an extremely rare condition with only 1% - 2% of the population having been diagnosed.
Because this condition is so rare, most doctors have either not heard of it or have limited experience treating it. Our local doctor had minimal experience, so we flew across the country to receive a second opinion on treatment options. The consensus, after each initial visit, was that Jill would need to undergo an extremely invasive brain surgery involving a significant incision into the skull and plugging or resurfacing the hole in the superior canal using a patch of bone from the inside of the skull. Recovery from the surgery is considerable as several months of PT would need to be completed to regain vestibular functions. Surgery was also not a guaranteed to correct the problem as there was often a reoccurrence of symptoms. This concerned us.
Thankfully, we found Mass Eye and Ear and went to see Dr. Daniel Lee who is an expert in SSCD and treats patients who suffer from it on a daily basis. He took the time to run various tests and procedures on Jill and also referred us to his colleague, Dr. Richard Lewis as opposed to suggesting immediate surgery. Through this process, we learned that there are additional factors that may have contributed to Jill’s condition which have allowed us to explore alternative treatment options and every possible non-invasive option prior to moving forward with such a major surgery. This is where we currently stand in this journey.
We feel so lucky to have discovered Mass Eye and Ear. It’s been a refreshing experience dealing with quality doctors and a hospital that treats its patients so well and is willing to take the time to explore every possible solution instead of jumping into such a major surgery. Running and raising money will help Mass Eye and Ear continue to make advances on this rare and fairly new condition which is so important to us.
My wife has been so strong and positive dealing with her daily task of being a wife, mother and carrying on a full time job. Most people have no idea that she has any medical condition or the constant pain or symptoms she deals with every single daily. She has chosen, up to now to keep her condition mostly private and to see her out you many not think anything is wrong. She has kept it quite up until now because she has not wanted to be looked at with pity or have her illness be the thing people think about when they see her. She will never complain to anyone. When we are out, people may not notice her holding my arm at times when she is walking upstairs or is having an issue with her balance. She continues to attend loud sporting event and concerts with our 4 children despite the fact that it causes her physical pain.
Jill is an amazing athlete. Just recently I heard a woman say to her “you should go on American Ninja Warrior”. People have not noticed yet that she is not running races anymore and has not in 2 years. Clearly races which involved swinging, climbing, jumping, trying to balance on top of objects or running on uneven terrain is not ideal given what she is dealing with. Racing, staying active and going to shows was a big part of Jill’s life and a big part of the things we did together. She confessed to me recently that she has come to peace with no longer being able to race competitively; She just wants be able to go to the gym again, go for a run or just be able to enjoy our kid’s concerts and sporting events without it causing dizziness, make her eyes have rapid movements, making her sick or making her leave early from events.
I am doing this in her honor. Please consider supporting my efforts. Thank you for your consideration.
Mass Eye and Ear clinicians and scientists are driven by a mission to find cures for blindness, deafness and diseases of the head and neck. Each year, 300,000 people—adults and children—from 80 countries seek care at Mass. Eye and Ear and 20,000 of them undergo life-changing surgery.
Mass. Eye and Ear is home to the world's largest vision and hearing research centers, offering hope and healing to patients everywhere through discovery and innovation. As a Harvard Medical School teaching hospital, Mass. Eye and Ear trains future medical leaders in ophthalmology and otolaryngology through our highly competitive residency and fellowship programs.
Mass. Eye and Ear is ranked a Top Hospital by U.S. News & World Report and a proud member of Partners HealthCare.
Learn more at MassEyeAndEar.org