Annalisa Caicci. Arnold Chiari malformation type I, Cord Traction Syndrome. Descent of the cerebellar tonsils, idiopathic syringomyelia and idiopathic scoliosis.

Published by ICSEB at 8 October, 2012

Surgery date: December 2011

My name is Annalisa Caicci, I am 27 years old, I live in the Province of Padua and on 20 December 2011 Dr. Royo performed surgery on me.

I never had any problems during my childhood: I always did ballet, lots of sports and movement. From April 2004 onwards, following a sports accident- passing on the baton in a relay race- I started having pains similar to electric shocks and stinging in the area of right side of the abdomen, and progressive loss of hot and cold sensitivity. In the beginning I didn´t give any importance to the matter and kept on going about my life normally, however with discomforts, back aches and frequent electric shocks. All of this later on moved downwards into the inguinal area and the thigh and finally, after a strong flu with lots of coughing, in March 2007 it slowly took over also the right armpit, arm and hand. After this episode, every coughing fit turned into something painful. The same happened with sneezing or any kind of effort that would involve internal compression. I started to feel very intense shocks that would radiate into the neck and the right arm: the hypo-sensitivity was a nuisance like pins-and-needles and there were electric shocks with every little jump or movement, also when simply walking or on the stairs. Due to the pains that increased with temperature changes, and the lack of the doctors´ capacity to comprehend what was the reason for these symptoms, many would ascribe it stress or a psychologic problem, in September 2007, I had a magnetic resonance of the cervico-dorsal spine done with the diagnosis of a presence of a pluricavitary syringomyelia from C4 to D8 and Arnold Chiari malformation type I.

After the initial panic that took over when I started to search for information on the internet and was finding that I was dealing with something serious, I tried to gather strength and make it through, even with my difficulties and despite the fact that I did not want to realise what kind of disease I had, or what were its consequences.

Since July 2011 I started to have hypo-sensitivity also in the ends of the fingers of my left hand, along with the pain in my right heel that would sometimes come over me. In September 2011 I discovered that a dear friend of mine had the same disease, however, she had already undergone surgery with Dr, Royo: a coincidence that I could not let go.

I spent many a days thinking about the surgery and the related advantages that she had told me about personally, and about the fact that this could be the solution that I could need as soon as possible. The idea to have surgery had never crossed my mind, specially keeping in mind the very invasive techniques that I had been told about, but after hearing this testimonial, that moved me deeply, I took a step back to think about my future and what I could be expecting. I got in touch with the Institut Chiari de Barcelona and thanks to the availability of the psychologist Mrs. Luè, I sent in all the resonances and material that I had in order to get them assessed for the possibility of having surgery.

On Sunday 18 December I left for this new adventure I was starring. On Monday 19 the appointment with Dr. Royo for all the examinations and Tuesday 20 the sectioning of the filum terminale surgery which lasted 50 minutes: minimally invasive surgery without any kind of risks. Three hours after the surgery I was already walking, I had recovered the sensitivity in right arm and thigh, and the strength in both arms, the uvula, which had been diverted returned to being straight, and furthermore an interior well-being as I had not felt for some time. On Wednesday 21 December, on the check up, Dr. Royo discharged me in order to return home and I spent ten days in total relaxation: the best christmas of my life.

I can confirm, with regards to many people who enter hospital in difficult conditions, I wanted to have the surgery in order to prevent and block the pathology, which degenerates on a daily basis. But actually I realised that I had learned already some time ago to live with chronic pain, believing that it was part of being well. Until 20 January I had stuck to a quiet life, without strains, and after the check up appointment on 1 February when they told me that I could go back to doing sports, I started to train again, to dance and to take up again all my activities without any problems.

Now, everything is different and everything is a discovery: I know that Arnold is always with me, not being able to degenerate any further, I know I have to be careful, because if I overdo it, he reminds me that he is there, with a pain or light discharges with my movements, but I am so happy to know that I am still living and living well!

I have been practising ballet for 25 years, I teach ballet, musical fitness and motor training and I love doing all kind of sports even with special care to each movement that could damage my health, despite the fact that I had to dismiss those that I could not deal with any more.

I hope that my story can be useful to many other people, because I believe that it is important to inform oneself without stopping at the first closed door, to be a little bit our own doctor, to understand what is best for our health and to get to know new and diverse techniques that, like this one, solve a big problem in one hour of surgery and with a very short recovery time.

I recommend to get in touch with Dr. Royo and the Institut as soon as possible, because I have found wonderful people who put the person in the centre of things and that return to you strength, dignity and tranquility in order to face this disease, which is less rare than it seems, in order to take back your life into your own hands.

A huge thank you to Dr. Royo who is a unique person, of great professionalism and humanity, and who has given me the chance to live for a second time, and to the entire team of the Institut Chiari, especially to Mrs. Luè and Dr. Fiallos.

My gratitude goes to AISACSISCO for their network of people that I got in touch with and with whom I continue to exchange advise and opinions.

I leave my telephone number and email address for further information.

Annalisa Caicci

+393408202465

[email protected]

30/04/2014

Two years after surgery, the patient shares the link to her personal website with us, to show us all she is able to do and how she feeling currently. Many thanks to her for this!!

www.annalisacaicci-danza.it

Video testimonial of Annalisa