{"id":83138,"date":"2014-04-25T00:00:35","date_gmt":"2014-04-24T22:00:35","guid":{"rendered":"https:\/\/dev.institutchiaribcn.com\/comunicacion\/letter-written-to-the-french-minister-of-health-from-father-of-a-patient-operated-at-icseb\/"},"modified":"2026-04-02T10:29:52","modified_gmt":"2026-04-02T08:29:52","slug":"letter-written-french-minister-health-father-patient-operated-icseb","status":"publish","type":"comunicacion","link":"https:\/\/institutchiaribcn.com\/en\/letter-written-french-minister-health-father-patient-operated-icseb\/","title":{"rendered":"Letter written to the French Minister of Health from father of a patient operated at ICSEB"},"content":{"rendered":"

Published by\u00a0ICSEB<\/a>\u00a0at 25 April, 2014<\/p>\n

 <\/p>\n

Evelyne and Jo\u00ebl Saint-louis \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Ir\u00e8ne Saint-Louis
\n21 rue des Chaponni\u00e8res \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0Born 27-03-1996
\n89100 Gron \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0High school student
\nTel\u00a0: 09 54 39 09 32 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a09th of Jan 2014
\nLRAR<\/p>\n

A
\nMrs. Marisol Touraine
\nHealth Secretary
\n14 Avenue Duquesne
\n75350 Paris 07 SP
\nSubject: Reimbursement of cross-border treatment \u2013 rare diseases \u2013 Syringomyelia<\/p>\n

Madam Minister,<\/p>\n

Our 17-year-old daughter Ir\u00e8ne Saint-Louis, and us, her parents, wish to make you aware about the reimbursement of the treatment of a rare disease, syringomyelia, of which the pathophysiological mechanism seems to be the same as of idiopathic scoliosis.<\/p>\n

Nearly at the age of 6 Ir\u00e8ne was diagnosed with scoliosis and the indication was limited to simple check-ups. Ir\u00e8ne is full of life, she practices dance, gymnastics at interregional level, has a good social life and excellent results at school.<\/p>\n

In 2010, because of back pain in the lower left sub-ribcage region, we did an orthopaedic consultation at the Saint-Joseph hospital where she was diagnosed with syringomyelia. She was referred to the reference centre for syringomyelia at Kremlin Bic\u00eatre.<\/p>\n

At this time the classic painkillers, which were prescribed, no longer soothed her pain. She regularly took anti-inflammatory and sometimes (rarely) took opioid drugs prescribed by her doctor.<\/p>\n

The surgeons whom we visited proposed a bi-annual orthopaedic and neurosurgical monitoring (4 visits per year) for all the treatments, and give us a new test report (X-Ray and MRI) every time we visited and it required us to drive regularly to Paris and Ir\u00e8ne had to skip the classes, later had to recover them, which caused her even more fatigue.<\/p>\n

On the other hand, it was difficult not only to obtain and synchronize the medical appointments but also the appointments of scanning services which refused to give us the results in hand on the very same day. In this way, we are forced to carry out multiple journeys to Paris from Gron.<\/p>\n

Therefore, it was a journey full of obstacle that Irene had to do for the last three years without any results, because apart from the advised bi annual check-ups, the only proposed treatment was taking Paracetamol which showed to be totally ineffective in her case.<\/strong><\/p>\n

Indeed, new neurological disorders appeared: urgency to void, misalignment of the tongue and uvula to the right, cutaneous hypoesthesia, certain reflexes were absent, dysphagia for liquids and solids appeared, along with an intensification of smell that could become annoying in the day-today life (hindrance in alimentation); and 2 times she experienced an episode of severe lower limb weakness with a feeling of dizziness.<\/p>\n

Searching in the Internet, we found information on the work realized decades ago in this field by Dr. Miguel B. Royo Salvador, Neurologist and Neurosurgeon, Director of the Institut Chiari & Siringomielia and Escoliosis Barcelona.<\/p>\n

Regarding this institute, we had been explained in Paris that the proposed treatment was useless, and that the results, if they had any, were only linked to a placebo effect.<\/p>\n

Trusting the team which was a reference in France, we continued Irene\u2019s follow-up in the Kremlin Bic\u00eatre for three years and during these years, although her disorders increased, her pains increasingly made her incapable to do things (following difficult courses: she had to attend certain classes remaining standing at the back of the class with teachers who were fortunately affable) no treatment was proposed.<\/p>\n

That is why we finally decided to take Irene to a consultation in Barcelona, in order to have the opinion of Dr. Royo.<\/p>\n

She was diagnosed to be suffering from \u201cCord Traction Syndrome\u201d, with syringomyelia and idiopathic scoliosis and Irene left the appointment happily because finally she found a possible solution for her problems. As she wanted to be operated, we, his parents agreed to her request.<\/p>\n

The budget for the surgery and stay at hospital with an accompanying person amounted 15,772, 00 euros. We acquired a loan repayable over 9 years. To this we had to add the cost of travel, hotel, restoration, travel etc.<\/p>\n

Our daughter was operated on 16th<\/sup>\u00a0of January 2014. The surgery lasted less than an hour and it left a small scar above the coccyx.<\/p>\n

In the next few hours after the operation, the uvula and the tongue centred, the reflexes reappeared, sensory disturbances, besides mechanical pain decreased along the spine. Within the past one week, Irene was feeling better.<\/strong><\/p>\n

Two consultations are still planned in Barcelona to monitor her state: one within a month, and another within 6 months.<\/p>\n

We are various families to accompany our relatives to Barcelona, where they are attended successfully by the team of Dr. Royo, while the only treatments proposed in France for this disease are either ineffective or sometimes craniectomy, a heavy and invasive surgery that lasts 2 or 3 hours and with costs (especially long post operative follow-ups), and risks.<\/p>\n

Considering the above, don\u2019t you think Madam Secretary:<\/p>\n

 <\/p>\n