Published by ICSEB at 9 March, 2020
My name is Angéline, I’m 36, a wife and mother of 2 beautiful children. Sharing my experience here has a liberating effect and hopefully will help those who are stuck in the process of finding the appropriate treatment.
Since 2016 my life and that of my family has been altered by the diagnosis of Arnold-Chiari Syndrome type I and later on by a C5-C6 cervical herniated disc operated by Dr. P. in Bordeaux (France) in 2017.
Arnold-Chiari Syndrome type I is a rare, congenital malformation, characterized by the descent of the cerebellum through the foramen magnum, associated with unbearable daily pain, like headache when binding forward or rotating the head and when changing position, neck pain, strong photophobia, tinnitus, intense facial neuralgia, contracture of the trapezius, difficulty to swallow, lack of sensitivity and strength in the upper extremities, vertigos, tiredness, …
These symptoms, very painful and recurrent, forced me into isolation. This had an impact in my activities with my children and my husband. This condition is invisible but it’s very real! Furthermore, it is very little known even by many health professionals… who hide behind their own words whenever they feel impotent: “Madam, you are stressed!” or “you are nervous” or “you are depressed”. A well-reputed neurosurgeon simply told me: “Madam, you need to see a psychiatrist”! This irritated me! Imagine the psychological impact on my family and work life! I’ve always been active and all of a sudden I found myself with pain that forced me to stay home and leave the caregiver job that I loved so much. Therapists must be trained for pain treatment … there’s still a long way to go and for some radiologists to train to advance in knowledge and not to denigrate!
Luckily my GP, who knows me well, had the will and energy to keep on researching and finding a diagnosis. Since then, I had various tests and received several medical opinions (at the CHU in Limoges, at Châteauroux Pain Clinic, at Kremlin Bicêtre Paris, at Bordeaux Sport Clinic). They prescribed intense treatments, then injections of botulinum toxin into the jaws, occipital region and trapezius initially at Limoges CHU and then in Issoudun with my rehabilitation physician in the trapezius area and in the sternocleidomastoid muscle. These injections act on the hypertrophic muscles and their effect lasts 2 to 4 months.
I consulted several times a neurosurgeon in Paris, who’s well known for his experience in this condition. However, he considered that nothing could be done in my case, as the stage of my condition was not sufficiently advanced.
After the cervical herniated disc surgery in Bordeaux, I was directed to a rehabilitation centre in Issoudun from December 2017 to July 2018. During 7 months my children didn’t see their mom and my husband managed to get by on his own. There was so much sadness in their eyes when I returned home every Sunday night. Despite everything, I wanted to show them that I remained strong and positive and that our love had to keep us together!
During my stay at the centre I met wonderful people both among the multidisciplinary staff and the patients. Thanks to their skills, their ability to listen, their humanity, I gained some mobility in the upper part of my trunk. With time, I regained my self-confidence and recovered, even if partially due to the symptoms of Arnold-Chiari Syndrome.
My rehabilitation physician at this centre was Dr. Gianluca Pisciotta, who became like family, a trusted person and my “saviour”, who never judged me like many others did! His experience, not limited to France, led me to consider a different surgical approach, which is applied at the Institut Chiari de Barcelona, an international reference centre. This includes the sectioning of the filum terminale, a much less invasive and risky intervention, compared to the suboccipital craniectomy that is performed in France. Through an incision at the level of the sacrum, the ligament (filum terminale) is reached and sectioned, thus releasing the abnormal tension that it exerts on the spinal cord and that can produce a lack of blood flow (idiopathic Syringomyelia).
I thought about it and made my decision freely. Dr. Pisciotta, as well as the therapists and my GP, supported me in my fight and in pursuing a solution. Thus, we prepared a dossier to send to Barcelona in order to know the opinion of the specialists at the Institut. Despite the economical and emotional difficulties, I decided to go on without the help of donations, as this was my battle against a disabling condition.
In October 2018, Dr. S., neurosurgeon in Barcelona, diagnosed: Neuro-Cranio-Vertebral Syndrome, Multiple disc disease, Descent of the cerebellar tonsils (Arnold-Chiari Syndrome type I). After several mails, also with my doctors, I got in touch with an association that guided me when I had to take my decision.
On 7 November, I had a 2-hour consultation with Dr. S., with the assistance of my translator, followed by preoperative tests and finally the surgery on 8 November. Only a few hours after surgery, I already experienced some improvements – I couldn’t believe it – except the pain in the sacrum region due to the intervention. What a relief for my family and me! Congratulations for the human part, listening and kindness of Barcelona staff!
I had post-surgery check-ups scheduled, one very positive in December 2018 and another one in November 2019 with new scans.
I’m immensely grateful to Dr. Miguel B. Royo and his staff, for being very skilled both on a human and technical level.
I can now tell to all those who suffer from this condition that its progression can be stopped, as well as the pain and its cause. We can’t keep on suffering without doing anything. We deserve a better quality of life. It’s true that this is a rare condition, however if the costs of the sectioning of the filum terminale were covered – at least based on those of the surgery that is performed in France – or if the travel costs were covered, how many people could stop suffering?
There are doctors who still have too many prejudices and people, whom we know well, that call us “psychiatric depressive”!
I made it thanks to my research and perseverance, with the support of my husband, my children, my friends and doctors. Today I’m doing well. I did a day hospital rehabilitation in Issoudun for 5 months, I started to do activities again with my kids and my husband without being in constant pain as before. Regarding work, I’m participating in a professional reorientation programme, which includes social and health care training and will allow me to keep on helping people, that is what I love to do.
A new serene beginning is waiting for me. I’m deeply grateful to my family, Sylvie, my friends, my doctor, also to the Rehabilitation Centre in Issoudun, where Dr. Pisciotta’s experience together with the therapists, the caregivers and the patients played a fundamental role in this long journey. It will leave an indelible mark on my children and my husband …. but we won the battle!
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