Carissa's Story - A World Traveler's Journey to Find the Right Expert for Moyamoya, Deep Expertise Outweighed Being Close to Home

Hailing from Alexandria, Virginia, Carissa had been an active, healthy person working as a high school counselor. In her spare time, she and her husband were passionate about travel and had been to many exotic destinations. On their recent trip to Turkey this past July, however, Carissa started to experience "brain fog." At first, Carissa just thought she'd been suffering from exhaustion since they had been in Turkey for almost two weeks before she felt weird. She thought the extreme heat and hectic schedule, flying and driving from one Turkish city to another, was the culprit, so she decided to cancel a scheduled excursion. She took a day and rested at their hotel, hoping the symptoms would go away. But after continually forgetting her cell phone's passcode and not being able to recall familiar words when speaking or texting, Carissa called her sister, who had medical expertise working as a dentist, and was concerned she may be having a mini-stroke.  

Much More Than Exhaustion

Upon learning from her sister that a stroke was a possibility, Carissa and her husband decided to fly home the next day and went straight to the ER upon arrival. Carissa was admitted to Virginia's Inova Hospital's ER, where was revealed the presence of a Transient Ischemic Attack (TIA), also known as a "mini-stroke," It's a temporary disruption of blood flow to the brain that causes stroke-like symptoms but doesn't cause permanent damage. While symptoms are similar to a stroke, they typically resolve quickly, often within minutes. Her CT scans also showed blockages. Carissa stayed in the hospital for observation and monitoring, was released after five days, placed on blood thinners, and went to a neurologist. There she was further prescribed Plavix and aspirin, advised to change her lifestyle, maintain a healthier diet, stay away from stressful situations, and ordered additional imaging.

At this time, Carissa was also suffering from tinnitus or a "ringing in the ears," although some people may hear other sounds. The sounds may come and go, be continuous, occur in one or both ears, and vary in pitch. This condition could be severe enough to interfere with daily activities. The additional imaging (head and neck CT scans) revealed that Moyamoya may be a diagnosis, but a cerebral angiogram was required to know for sure.  Carissa proceeded to Fairfax Vascular Center, where a cerebral angiogram confirmed the Moyamoya diagnosis.              

What is Moyamoya? 

Moyamoya syndrome is a rare condition in which blood vessels at the base of the skull progressively narrow, limiting the flow of oxygenated blood to the brain. "Moyamoya" means "puff of smoke" in Japanese, and the condition is so named because the body grows a secondary network of small vessels to compensate for the restricted blood flow. The network of new vessels on an arteriogram resembles a cloud or puff of smoke. 

When Carissa's care team in Virginia advised that the necessary surgical treatments for this condition may include a direct revascularization procedure, such as an EC-IC bypass, as well as indirect revascularization procedures like encephaloduroarteriosynangiosis (EDAS) and pial synangiosis, Carissa's instincts kicked in. For a rare condition like this, she knew she'd have to find a true expert and began to do her own research on the country's leading specialists. First to see on her list was Columbia Neurosurgery's Dr. E. Sander Connolly, a world-renowned endovascular surgeon and Chair of the department, with a reputation for excellence in specialized care for Moyamoya.

Choosing Columbia Neurosurgery

At her initial consultation, Carissa was impressed with Dr. Connolly's experience and 95% success rate for these procedures. She shared, "Dr. Connolly took a great deal of time to educate me about the procedure. He was confident and cautious at the same time." She continued, "Once I met him, I knew in my gut he was the right person, and I did not need to see the other surgeons on my list."

Dr. Connolly and his team performed an EDAS and craniotomy surgery on Oct 15, 2024.

Carissa's Patient Experience

Carissa shares that during her time from the initial consult to recovery, "I was never rushed during my appointments, and they took their time explaining to me what to expect. Everybody had excellent bedside manners." The team also had to closely monitor that Carissa was also managing diabetes while adjusting to a new blood pressure baseline and tinnitus. After surgery, Carissa was transferred to the Neuro ICU, where Dr Connolly, the staff, and the NPs visited, "even on their lunch breaks, which meant a lot to me." Carissa shares that Alex Agopyan-Miu, MD, a resident who checked on me daily, "treated me with deep respect and communicated all my concerns to Dr Connolly."  NYP Hospital also honored and supported Carissa's Catholic faith by accommodating daily visits from a priest. Carissa says, "This contributed greatly to my peace and healing." After two weeks, Carissa had a seamless discharge, with clear post-operative instructions and resources. She was ready to head home to Virginia to recover and start PT. 

Now, months later, Carissa highlights the well-coordinated teamwork. All departments worked together seamlessly, from surgery, neurology, and nursing to ancillary services like dietary, housekeeping, and physical therapy.

Carissa shares, "I will always be grateful to the entire team for the excellent care I received, including Gaby T'Osto-D'Antonio, Jeannette Abella, Georgio Dano, and Elise Bouchard, who are excellent NPs who gave me their personal cellphones for emergencies and answered messages on the Columbia portal."  She also highlighted William Riquelme and Tania Mercado-Camacho in the office, who took care of my paperwork—FMLA forms and short-term disability forms—and coordinated with my employer and insurance companies. 

Final Reflections

Carissa is back to work and thriving. MRI and MRA imaging tests confirmed the surgery was successful six months after the surgery.  Blood flow was restored on the left side of her brain. Before the surgery, the left carotid artery was almost completely blocked; the surgery allowed more pathways for the brain.  During her recent follow-up with Dr. Connolly, he told her that everything looked excellent and stable and that he did not have to see her again until her one-year follow-up. She's looking forward to continuing to live life to the fullest.  She is resuming her love for travel. 

Says Dr. Connolly, “We’re so glad her surgery was uncomplicated and she’s done so well.”

Carissa shares, "I will always be grateful to Dr Connolly and his team's commitment to exceptional care. They didn't just treat my condition; they treated me as a whole person. That level of care is rare and deserves to be celebrated." Finally, as to what she'd like others facing similar medical challenges to know, "I encourage others to trust Dr Connolly because I can assure them that they will be in capable and compassionate hands." When it comes to a rare brain condition such as Moyamoya, it is essential to seek intervention from an expert surgeon and a hospital that has an excellent research facility for the disease.  For me, the best thing I did to manage my Moyamoya was to look for the best, even if it meant going outside Virginia for it.