A Scoliosis Journey
What a scoliosis journey looks like? Well it started with us discovering about my son’s rare disease called idiopathic scoliosis and kyphosis double curves when he was only 6 months old.
The journey started with many uncertainties and mysteries like: No doctors in our country to treat him because of his young age. Or we need to wait until he is 7 years to start with multiple surgeries.
The thing that kept us moving and not losing hope is the divine faith. The believe there could be a treatment and the possibility of his recovery from this illness.
Of course the moment we knew about his diagnosis, research started. I have read articles, papers and blog posts about this condition. I watched you-tube videos as well of patients closer to my son’s age who went through treatments to ease the spinal curves. I even joined the facebook community groups related to casting, bracing and halo gravity treatments. Doing this empowered me with information. It wasn’t that hard to understand what the doctors were talking about.
After doing lots of research and analysis, we decided to start with casting treatments. We knew his spinal curves were so severe but we thought it was worth a try. So the casting treatment started on 30th May 2022 with Dr. Zaid Al Obaidi in Al Zahra Hospital in Dubai. He had the full body cast called: the turtle neck body cast with an opening around his stomach area to allow his breathing and feeding functions.
The casting treatments kept going every 3 to 4 months until he was 2 years old. Then we shifted to bracing treatment temporarily to allow his muscles to grow and strengthen.
After 4 months of using the brace, his spinal curves worsened to reach the severe levels again. The initial suggestion was to go with the halo gravity traction. But we didn’t stop there. We sought for several opinions from different doctors in different countries. It was not easy to watch him suffer in that condition. But it was important to know his treatments options and take the necessary time to decide. I remember his reports were sent to hospitals in Thailand, India, America, Egypt, Malaysia and Türkiye.
Finally we landed on the treatment called: VBT. It is a surgical treatment where the doctors insert screws on the side of the spine that is curving and attaching them with a thread placed on the other side of the spine to encourage it to start growing. This treatment was facilitated in Emsey Hospital in Türkiye with Professor Mehmet Aydogan on 29th November 2023.
The idea behind this treatment is to use the patient’s growth as a support where the more growth happens, the spinal curves reduces which as a result increase his lung capacity to breath.
As the doctors mentioned, the effects of this surgical treatment would be noticeably visible in the long run when he is 7 to 8 years old.
Reflecting on this journey from a distance, it includes lots of patience and waiting. It needs the belief and hope that things would work out eventually and this situation was meant to happen for a divine reason and purpose. It is the positive expectation and the thought that whatever comes your way is for you to get the message, the lesson and the wisdom. That is priceless and I hope every patient and care-giving families realize this sooner than later.