Francesca Nulvesu. Neuro-cranio-vertebral syndrome, Filum disease, Arnold-Chiari syndrome type I, basilar impression, idiopathic syringomyelia, idiopathic scoliosis. Multiple disc disease.

Published by ICSEB at 29 September, 2023

Surgery date: 15/12/2020
Date of the testimonial: 12/7/2023

Joyful updates

I discovered that I had Arnold-Chiari Syndrome when I was 18 years old, inquiring about a headache that was eventually confirmed to be unrelated to the pathology.  The tonsil descent was minimal, I was completely asymptomatic and so I decided, together with the neurosurgeon I had at the time, that I would not undergo the craniectomy procedure that other doctors had advised. For 22 years, my life went on without problems, I had two children with natural childbirth and I almost forgot that I had Arnold-Chiari.

In March 2020, after a stomach flu, my ordeal began. I started having a lot of unsteadiness, difficulties in moving my neck with and occasional vomiting. My head was in a constant state of confusion, I had very intense pain in my shoulders, neck and the base of my skull. I consulted an ENT specialist thinking it was labyrinthitis, which was immediately ruled out. I had a gastroscopy and many other tests, all negative. As time went by, the situation worsened, especially because the vomiting intensified, becoming almost daily. It was the time of lockdown, and I was not able to have an MRI until September 2020, to investigate the syndrome that my mind had wanted to put aside so many years ago.

Unfortunately, it turned out that the situation had worsened considerably and severe syringomyelia and hydrocephalus appeared additionally.

The neurosurgeon I had had for years was no longer practicing; I then began to travel all over Italy, consulting among those who were considered the excellencies of neurosurgery. The answer was always the same: I had to undergo decompression surgery immediately. I was terrified, my children were 2 and 12 years old. My situation got even worse, not helped by the lack of humanity with which the doctors treated me.

I started searching on the Internet and discovered Dr. Royo’s center in Barcelona. I contacted them immediately, they evaluated my MRI and with their great compassion, they reactivated my hopes. At the same time, I contacted the Italian association of patients operated with the filum method in Barcelona. The contact person in my area, whom I will never stop thanking, explained her story to me and put me in contact with other patients who had undergone surgery like her. The Italian doctors spoke to me about Dr. Royo almost like a quack, but I decided to trust my instinct and the many patient testimonies I heard.

On 19 December 2020 I was operated on in Barcelona by Dr. Fiallos, assisted by the very kind Mrs. Gioia Luè.

Obviously, I expected to have an immediate recovery, as happened to many patients with whom I spoke.

I had a slight initial improvement, but then everything went back to the way it was before. Months went by, but my condition did not change; on the contrary: the vomiting intensified, reaching a frequency of 4 times a day. Each crisis left me completely knocked out, completely without strength and with intense pains in my head and shoulders, which seemed to be on fire with pain. I was already an invalid. My relatives had to help me to clean myself, I could not lower my head to tie my shoes, I was unstable and I was not able to have a social life, because any movement exposed me to the risk of vomiting.

The team in Barcelona had advised to do physiotherapy, and for a long time I tried to go to several physiotherapists, I went to see osteopaths, I tried to exercise, but the difficulty was also that my medical situation was complicated and here they did not know about the filum disease. After the operation, I lived sitting on a sofa for two long years, always hoping that for me too the end of my terrible experience would come, but the more time passed, the more I feared that I would remain in that condition.

When, after a long period of refusal on my part to do anymore medical visits, I decided to repeat the MRI and it turned out that what I had been assured in Barcelona was true: the syndrome had remained stable, as well as the syringomyelia. That was  in December 2022, and 2 years had passed since the procedure. I went back for a check-up with Dr. Fiallos, who encouraged me to continue looking for a physiotherapist who knew how to treat the condition and who could work with me. I could hardly walk anymore, the slightest movement caused instability and vomiting.

In January 2023, after several searches, I finally found a physiotherapist who knew my problem and had experience in treating it, and with great professionalism and kindness tried to get me back on my feet. I still couldn’t believe it: my family needed me, and I was thirsty to live again.

After a month and a half of treatment three times a week, my rebirth began. One morning, when my husband woke me up, he noticed that my posture was different and I no longer had the feeling of instability that had accompanied me for three long years. The vomiting stopped completely, it was as if my head was freed from that intense pressure that caused me confusion and brain fog. I put all my soul into it, every day I cycled kilometers on the exercise bike, Dr. Fiallos had been very clear in telling me that after the operation it was necessary to do daily physical activity and the right physiotherapy. My body finally seemed ready to get back on track.

Now I am back in full control of my life; I am back to driving, back to work, just got back from a trip and I am fantastic. I still have to regain some strength in my left arm and some head movements bother me, as do heights. But I think these are minor things, and I am convinced that I will be able to resolve these aspects as well. I continue to do maintenance physiotherapy and try to walk a lot.

And here is the story of my return to life, accompanied by my wonderful family, by the patients who have always given me courage and hope, by the professionalism of the doctors in Barcelona, by the angel of my physiotherapist and my psychotherapist, who has taught me that the disease is only a small part of my being. And with myself, who from the sofa of my house never stopped smiling and also ironizing about my condition, because life is one and it is wonderful.

For me it has taken longer than for others, but I was successful: I hope that my story can give hope to those who are going through the same painful journey.

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