Julia UCLA

Introduction to AVM and Personal Experience

  • Age and Condition: 19 years old; AVM damage in the thalamus.
  • Post-Surgery Perspective:
    • Grateful for life after the stroke and takes life more carefully.
    • Mental health struggles before the stroke; lacked support despite advanced classes.

Recovery Journey

  • Post-Stroke Challenges:
    • Struggled with acceptance of medical condition.
    • Friends disappeared during recovery, leading to feelings of abandonment.
    • Intensive rehabilitation for a year:
    • Types of Therapy: Speech therapy, occupational therapy, physical therapy.
    • Conditions: Right side hemiplegia, peripheral vision loss, aphasia (language disorder).

Awareness Advocacy

  • Youth Ambassador Role:
    • Working with the Aneurysm and AVM Foundation to raise awareness that strokes can happen at any age.
    • Hosting a virtual podcast soon.

Emotional Support

  • Support from Family and Friends:
    • Significant family support, especially from mom, aunt, and stepdad.
    • A few friends remained supportive.
    • Yes, support from some teachers and medical team at UC San Francisco.

Diagnosis and Initial Symptoms

  • Experience Before Stroke:
    • Invited to a friend's birthday; felt anxious and had headaches leading up to the stroke.
  • Stroke Experience:
    • Initial symptoms included drooping face, slurred speech, paralysis.
    • Admitted to Stanford Children's Hospital; underwent several surgeries due to complications.

Recovery Adversities

  • Surgery Details:
    • Multiple surgeries: craniotomy, embolizations, emergency bypass surgery, fasciotomy.
    • Experienced a blood clot leading to further emergency surgery but managed to keep foot and leg.

Ongoing Recovery

  • Long-Term Effects:
    • Gradually progressed from wheelchair to cane; now able to walk without assistance.
    • Continues therapy (physical, occupational, speech).
  • Mental Health:
    • Anxious pre-stroke and remains anxiety-prone post-stroke; actively seeks therapy and support groups.

Insights on Prior Symptoms

  • Symptoms Prior to AVM Discovery:
    • Noted anxiety and fast heart rate; thought they were due to stress.
    • Missed opportunity for early diagnosis due to being brushed off by doctors.

Coping Mechanisms

  • Coping Strategies:
    • Journals to cope with emotions; recognizes the need for ongoing emotional maturity and self-reflection.
    • Engages family and online support groups for comfort and understanding.

Impact of Stroke on Daily Life

  • Quality of Life:
    • Mourning former lifestyle; participation in sports and music altered significantly.
    • Challenges with running and piano playing, but progress is evident (playing piano with one hand).

Final Thoughts

  • Growth Through Adversity:
    • Acknowledges emotional growth and maturity through recovery process; learns to process grief and loss.
    • Now understands the importance of mental health and the effect of stigma around it.

Future Goals

  • Aims to continue advocating for awareness and eventually return to a level of activity and independence that feels fulfilling.