Published by ICSEB at 25 April, 2014
Evelyne and Joël Saint-louis Irène Saint-Louis
21 rue des Chaponnières Born 27-03-1996
89100 Gron High school student
Tel : 09 54 39 09 32 9th of Jan 2014
Mrs. Marisol Touraine
14 Avenue Duquesne
75350 Paris 07 SP
Subject: Reimbursement of cross-border treatment – rare diseases – Syringomyelia
Our 17-year-old daughter Irène 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.
Nearly at the age of 6 Irène was diagnosed with scoliosis and the indication was limited to simple check-ups. Irène is full of life, she practices dance, gymnastics at interregional level, has a good social life and excellent results at school.
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 Bicêtre.
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.
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 Irène had to skip the classes, later had to recover them, which caused her even more fatigue.
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.
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.
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.
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.
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.
Trusting the team which was a reference in France, we continued Irene’s follow-up in the Kremlin Bicêtre 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.
That is why we finally decided to take Irene to a consultation in Barcelona, in order to have the opinion of Dr. Royo.
She was diagnosed to be suffering from “Cord Traction Syndrome”, 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.
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.
Our daughter was operated on 16th of January 2014. The surgery lasted less than an hour and it left a small scar above the coccyx.
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.
Two consultations are still planned in Barcelona to monitor her state: one within a month, and another within 6 months.
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.
Considering the above, don’t you think Madam Secretary:
Therefore Madam Minister, we would to ask you persistently to intervene in favour of the affected patients so they can receive the most appropriate care according to their state, being cross-border, and this without any hindrance on the part of health systems and French social security.
Taking into account the proven effectiveness of the treatment method developed by Dr. Royo, all the measures taken in this regard would benefit not only the mentioned patients, but also to the French social security. Indeed, once cured, these patients are no longer burden to it.
Finally, couldn’t it be contemplated as a European practice, for the benefit of all, a greater cooperation between health systems of different European Countries of the Union?
In the hope of a positive response in this regards and thanking deeply beforehand, Please receive my sincere considerations.
Evelyne Saint-louis Joël Saint-louis Irène Saint-louis
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