Embracing the New Normal: My Life with Spinal AVM

How long did it take for you to receive a diagnosis?

On February 8, 2020, I was admitted, and a series of extensive medical tests were conducted. The process culminated in a Spinal AVM surgery on February 18, 2020.

How did you feel when you received your diagnosis?

It all happened so fast. The whole experience felt surreal yet frightening with the battery of tests I had to undergo, including MRIs, MRA, nerve testing, blood testing, and chest x-rays.

How did you communicate your diagnosis with your loved ones?

My family was by my side throughout the process and even sat in a conference with my team of neurosurgeons.

What treatments have you undergone and how have they impacted you?

Following my surgery, I became completely immobile and experienced significant pain. I was provided with a morphine pump, Tramadol, Panadol, and started rehabilitation with an occupational therapist (OT) and physical therapist (PT). It took me 20 months of physiotherapy to use a walker. Today my other mobility aids include a wheelie and a scooter 🛵 wheelie.

What is the most difficult part of your treatment, and how do you manage it?

Chronic pain became an issue in October 2020. I have managed it gradually through pain medication, mindfulness, physiotherapy, and acupuncture.

What has been the most challenging aspect of living with your condition?

Living with my condition presents challenges on psychological, physical, and financial fronts. Including having to manage a bladder & bowel issue.

"I have to learn how to live life again in my new normal."

How has your daily life and routine been affected by your condition?

I have to learn how to live life again in my new normal.

How has your condition affected your mental health and emotional well-being?

Initially, it sucked as I felt like my life was over. However, after accepting my condition, I have managed to regain much of my old life back.

What strategies have you found helpful for managing your emotions and thoughts?

I have learned to be humble, grateful, and kind to myself and those around me.

How has your diagnosis impacted your relationships with your friends and family?

I feel incredibly fortunate to have a supportive group of schoolmates from my Primary and High Schools who have rallied around me and my family.

What support systems have been helpful during your health journey?

I have found great solace and strength in the support groups I have cultivated. They have played a vital role in keeping me going.

What advice would you give to someone who has recently been diagnosed with your condition?

Be a Spinal AVM & chronic pain warrior all the way! Never lose hope and remember that life is truly worth living.

What advice would you give to your past self if you had the opportunity to go back in time?

I would tell my past self to have faith in God and to trust in the angels he surrounds you with.

How can others be more supportive and understanding of people with your condition?

It is crucial for others to cultivate greater empathy by educating themselves about Spinal AVM, chronic pain, and by spending quality time with individuals who are afflicted by these conditions.

Want to find out more about Arteriovenous Malformations (AVMs)? Click here.‍

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Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at marketing@jonda.io to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.‍

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Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.