Baojie Liu, Neuro-cranio-vertebral Syndrome. Filum Disease. Arnold-Chiari Syndrome Type I. Idiopathic Syringomyelia and Scoliosis.

Published by ICSEB at 6 September, 2024

Surgery date: May 19, 2016
Filmed: December 8, 2023
 

Hello everyone, my name is Baojie Liu, I am from China and I have idiopathic Syringomyelia and Arnold-Chiari Syndrome Type I. My first symptoms appeared in September 2014 when I was 18 years old: suddenly, I noticed numbness and pain in my arm. At first, I didn’t pay attention to it, thinking it might be a mild cervical issue. However, at the beginning of 2015, I started feeling back pain when sneezing. I felt a pulling sensation in my back. When I sneezed, it hurt a lot, and then I experienced dizziness. I didn’t care much; I thought it was due to my usual fatigue from work or studying.

It wasn’t until September 2015 that I started noticing my right arm and right hand were atrophying, and I also lost sensitivity to temperature and pain. I then went to the hospital for a check-up and was told I had C1-D8 syringomyelia with Arnold-Chiari Syndrome Type I, and that my condition was quite serious. I asked what solutions there were, and they told me that there is currently no effective treatment for the disease. Once you get it, the condition will continue to progress, and your body will be accompanied by pain. At that time, I had a lot of pain and numbness in my arm and cervical area. I visited many hospitals in Beijing, and they all recommended craniectomy, decompression surgery, cerebellar tonsil resection, or syringostomy, etc. I asked about the outcomes, but the doctors did not guarantee that the surgery would be successful – it could even be worse after surgery. The risks were relatively high, and I could become paralysed.

I decided against surgery. I went home, searched on Google, and found the Institut Chiari de Barcelona in Spain, a centre specialised in syringomyelia. I tried to contact Ms. Chen, a translator who looks after Chinese patients. Ms. Chen asked me to send her the MRIs and X-rays of my spine. When she received my tests, she passed them on to the medical team at the Institut, and they finally told me that I was a candidate to come to Spain for surgery.

According to my research, the risks of surgery in Spain are relatively low, and the cost is not too high. The surgery involves sectioning the filum terminale at the coccyx level. The surgery time is only about 45 minutes. There’s no need to lie down after the surgery; you can get out of bed and walk in the room, and the next day you are discharged from the hospital.

I decided to try it, so I applied for a visa. On May 16, 2016, I travelled from Beijing (China) to Barcelona (Spain). On May 18, I underwent preoperative tests, and on May 19, I was admitted to CIMA Hospital. The surgery went very well, and by noon the next day, I was discharged from the hospital. Before discharge, the doctor examined my wound in the morning. I returned to the Institute for wound control a week later.

After the surgery, I noticed a significant improvement; the pulling sensation in my back improved and I didn’t have neck pain. When sneezing, my back didn’t hurt anymore. The pain and numbness in my right arm have decreased, although I haven’t regained sensitivity to pain and temperature, my symptoms have generally improved a lot. After the surgery in 2016, I didn’t undergo new tests because I haven’t had any new symptoms and I feel very well.

In November 2023, I went for a check-up, and it turned out that the syringomyelia cavities I had at the cervical level had disappeared. I still have a bit of syringomyelia at the dorsal level, but I am very surprised that the surgery has made my syringomyelia disappear. In conclusion, the surgery was very successful, and my disease did not affect my life, work, or studies. Although I have not been able to recover from muscle atrophy, we must understand that some damage is irreversible.

MRI 24/02/2016 MRI 08/11/2023

To conclude, I wanted to tell everyone that when you are diagnosed with this disease, don’t be afraid, don’t worry, keep a positive attitude because the world is very big; we don’t have to go to doctors only in our home country. I recommend doing a lot of research on Google, being optimistic and patient to find a better solution. I recommend going to the Institut Chiari de Barcelona in Spain – you can check out their website.

Wishing you all a 2024 filled with good health, happiness, and prosperity. Don’t always think about your illness; maintain a positive and optimistic attitude towards life; after all, we still have a long way to go. At the same time, I would like to invite everyone to come and visit my hometown, Hohhot, in the Inner Mongolia Autonomous Region of China. You are all welcome to visit. Thank you.

Email: [email protected]