A resource for Moyamoya patients and their families that shares the personal experiences of Moyamoya patients. This motivational book helps those diagnosed with this rare disease recognize that there is hope and that they are not alone.
Samantha was diagnosed with MoyaMoya on May 13th, 2014 at the age of 19.
Her journey began on May 6th, 2014 when her smile began to fall. The doctors at Spear Memorial Emergency Room in Plymouth, NH, initially began treating her for Bell's palsy.
Just a few days later on May 11th, 2014 she felt her left arm going numb and her hand stopped working. Samantha went back to Spear Memorial where they then conducted a CAT scan around midnight that day. After having the CAT scan, doctors determined that an MRI was needed. Samantha had to wait until May 13th for her MRI, as the machine was only available Tuesday's & Thursday's in the small rural hospital. Spear’s team worked with Dartmouth Hitchcock’s neurology team; upon reviewing the MRI, Samantha was diagnosed as having a stroke and care was transferred to Dartmouth Hitchcock. Later that day, Samantha was officially diagnosed with MoyaMoya.
She had her first brain surgery June 10th, 2014 on the right side of her brain at Dartmouth Hitchcock. This surgery was successful and Samantha was able to return to Plymouth State University for her Junior year. Over the next two years with no additional strokes or TIAs, she finished college, and graduated Plymouth State University cum laude in June of 2016. She began working as a full-time Early Childhood Teacher as of August 2016.
The second phase of her MoyaMoya journey began on March 4th, 2017. Samantha felt her face drop and her words slurring as she was singing in the car. Her smile had begun to fall again and she soon went to Hartford Hospital Emergency to be checked out. It was determined that they needed to speak with her neurologist as her MoyaMoya was progressing again.
After following up with her neurologist in April, Samantha had an MRI and was referred for an Angiogram with Boston Children’s Hospital. On May 18th, 2017, she went up to Boston Children's for an Angiogram to determine when her next surgery would be scheduled. The following day, after returning home to Connecticut, she had another stroke. This stroke was causing aphasia: affecting her memory, thought process and ability to find the right words. Unlike previous times, she was sure this was a stroke and needed to spend 5 days recovering at Hartford Hospital. Even after the recovery, Samantha continued to have issues with finding her words and had to go through speech therapy.
Samantha had her second and third brain surgeries both on June 21st, 2017, at Boston Children’s, now on her left and middle sections of her brain. Later that day, following her surgeries, she had 3 additional strokes which lead to her staying in the hospital for 11 days. The first stroke affected her ability to speak; the second affected her tongue and swallowing, resulting in a feeding tube; the effects of the third were undetermined.
Samantha was in speech therapy following her surgery and strokes from June until September of 2017. Finally, in October of 2017, with her speech improved she was able to return to work part time as an Early Childhood Teacher. As of April 2018 she is no longer in speech therapy and is back to work full-time. She still has a GIANT smile on her face and is proud to be a MoyaMoya Warrior!
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