06/23/2023
June 23, 2023:
I wanted to provide everybody an update on my son. As many of you know, Will was affected with a virus in 2014 which was reported as a polio like virus, Enterovirus D68 / Acute Flaccid Myelitis (AFM). This virus left his right arm and neck with paralysis, and he was unable to move his entire arm.
In 2015, after seeking many professional opinions from John Hopkins, UCSD, and UCSF we opted to perform nerve surgery on Will’s right arm. Dr. Justin Brown at Rady’s/UCSD performed his surgery. Will's surgery was very intense and took over 28 hours over 3 days. They spliced two nerves in his good arm to move to his biceps and deltoid. They took the C7 root nerve from the good shoulder and bridged it over to his right side. We took the nerves from his ankles/calves to complete the bridge around his neck.
We did not see any improvement right away, but around the 3-month, mark we started seeing slight improvements. Within the year, Will was able to move his arm from his elbow down, he had full use of his wrist and fingers. Will immediately started up with his normal activities such as baseball, piano, rock climbing, and all things boys like to do.
Will continued with therapy the entire year of 2016 and 2017 then tapered off at the end of 2017. He played baseball with the Patriots league and a Christian Travel ball league. He played first base, pitched some, caught some, and played in the outfield.
In 2018 he was no longer able to play the piano due to the pain it caused in his wrist. He continued with baseball and the entire community was very supportive of Will. He was catching and throwing with one arm and played very well on first base over the next few years. As he continued to grow and go through puberty, he started getting a bit of pain in his wrist and shoulder.
At the end 2020, the pain in his shoulder, arm, and wrist started to become a weekly thing. We started back at Rady’s with very little help other than PT/OT. He continued to do the therapy but did not have any improvement with the daily pain. Dr. Wallace and the entire group of physicians were no help at all. Sadly, Dr. Brown had left San Diego and was working in Boston.
In 2021, as Will grew, the pain was getting worse while playing baseball so it was then that Will knew he could not keep up as a player. It was very devastating, but Will made the best of the situation. Will decided to stay within the baseball community and with the help of his high school coach, Coach Watkins, Will was given the opportunity to become the Director of Baseball Operations for the Varsity team at his High School. This opportunity has been amazing and has led Will to want to major in Sports Management with a minor in Kinesiology. He hopes to attend one of the Top Universities for Baseball and wants to immediately be part of the baseball team while attending college. His ultimate goal is to become a baseball manager, statistician, analytics manager, or manager for player development.
In February of 2023, we decided to fly to Boston to see Dr. Brown where he collaborated with 2 other physicians during our visit. Our goal was to see what we could do to ease the pain in Will’s wrist, shoulder, and arm. While in Boston we saw Dr. Bassem Elhassan, Orthopedic Surgeon who examined Will and determined he had no muscle support in his neck or shoulder and that was most of the daily pain he was experiencing to hold up his arm, and adding strain on his neck and back muscles. He advised us to do a Fusion Scapulothoracic Joint Shoulder surgery, which is basically to fuse his scapula to his ribs.
In April of 2023, we were also referred to see Dr. Abrams at UCSD for Will’s wrist pain. After our consultation with Dr. Abrams, he recommended Will have surgery on his wrist.
In June of 2023, we went forward with the wrist surgery with Dr. Reid Abrams at UCSD. Will had wrist surgery to the right wrist which consisted of arthroscopy with debridement of the triangular fibrocartilage tear, right ulnar styloidectomy, and right extensor carpi ulnaris stabilization with dorsal wrist retinaculum. Will has a soft cast on his wrist for 4 weeks and will have the cast on during his shoulder surgery.
June 20, 2023, we flew to Boston so Dr. Elhassan could perform his Fusion Scapulothoracic Joint Shoulder surgery. During the surgery, they did have evidence of complete
paralysis and atrophy of the trapezius muscle as well as near complete paralysis of the
rhomboid major, rhomboid minor, and levator scapulae. All these muscles were replaced with
significant amount of fat. The serratus was functional. They elevated the lower trapezius as
well as the middle and upper trapezius. Dr. Elhassan inserted 3 plates inside of Will to fuse his shoulder due to the lack of support. One of the plates was fused to his ribs, which has been the most painful procedure to date.
This surgery is a 8 week recovery in bed; then intense therapy for 6-8 months. We are praying that going through this major surgery Will can have relief and can be pain free.
Thank you for all your thoughts and prayers through this time.
