Published by ICSEB at 18 March, 2022
Surgery date: 02/09/2021
Filmed on: 04/10/2021
We are the Bruno family and we are from Buenos Aires, Argentina. Our children, 14 year-old Donato and 11 year-old Rosella, underwent surgery at the ICSEB on September 2, 2021. Each experience is unique but, just as the story of other families with the same diagnosis helped us not to feel alone and to make the right decision, we want to share ours and hope that it can help others as well.
From an early age she had occasional headaches, very spaced out, especially if she felt hot. During 2020, when she was 10 years old and during the lockdown, at night she suffered more and more frequently episodes of anxiety and confusion, strange thoughts, severe headaches, nausea and insomnia. She was always a very active girl, extremely cheerful and affectionate and that baffled us.
We had a consultation with a paediatrician and he told us that her discomfort was probably of emotional origin, as there were many other children who were distressed by the confinement during the pandemic or by changes of the growth phases.
These episodes ended up being daily and increasingly intense and happened at other times of the day as well. She would say to me: “Mom, I am not sad because of being at home. I am trying to relax and sleep; it’s not that I am nervous at night. I don’t know why this is happening to me or why I have this pressure like a bankd around my head“ We had some terrible and very distressing months. We brought her to our bed in case it calmed her down and she fell asleep at four or later in the morning. Once she fell asleep, she rested and this actually gave her some relief until everything started again the next day.
One day, she broke down. Her legs didn’t hold her anymore; she felt tingling in her hands combined with nauseas and a very severe headache. That weekend, we went through four different clinics until they took us seriously and did a CT and MRI scan that showed a 4.75 mm descent of the cerebellar tonsils. We were told to look for a neurologist or neurosurgeon and, for the first time, we heard about Chiari Syndrome. We were looking for the best paediatric neurosurgeon in our country, a specialist in Chiari, head of neurosurgery at one of the best paediatric hospitals in our country.
The first thing he told us when he saw her MRIs was “for me it’s not Chiari because it doesn’t show a 5mm descent which is the limit”. At my insistence on the different symptoms that Rosella had (headache, insomnia, back and limb pain, tingling and pins and needles, nausea, blurred vision and bright spots) his response was “take her to the psychologist”. To discard any doubts, he asked us for another MRI and, during the second consultation, he confirmed that Rosella had Arnold-Chiari Syndrome Type I and Syringomyelia and she had to have a dcompressive suboccipital craniectomy with a cervical vertebrae laminectomy in order to make the LCR flow better. He wanted to be very honest with us and he told us, he did not know the cause of the disease, that surgery would only alleviate the symptoms, that it was a very serious surgery, that it could go well or not, that there was a risk of hydrocephalyus, meningitis, which may need a more invasive second surgery and he finally said “ The Chiari patient has to get used to the pain”.
My husband and I came out of his office devastated, swallowing our tears because we didn’t want to worry our children who were waiting for us in the waiting room. We are Christians. We believe in the love and grace of God, our father who saves us through His Son Jesus Christ. We read the Bible and we pray. On our knees, beside our bed, we unload our heart in front of Him and we ask Him for help and guidance on the path He intended for us. We were resigned to go through with this surgery for our daughter but, thank God, for various reasons it did not materialize despite our attempts to do it, as it was desperate to see our daughter suffering and not being able to do nothing to relieve her pain.
In the meantime, I searched and read all the information I could find on the Internet. One night I saw a picture and the name “Institut Chiari & Siringomielia & Escoliosis” struck me. Was there an Institut specialized in my daughter’s condition? I immediately searched the web and I couldn’t believe it when they described a minimally invasive surgery through the sacrum that eliminates the cause of the disease. Completely different from what the Argentinian neurosurgeon had told us. That same morning, I filled out the form without much hope. They answered me quickly and kindly offered me a free remote diagnosis by sending her MRI and then we had a videoconference with Dr. Fiallos. He was very clear on my daughter’s diagnosis and in his explanation. He mentioned that it is a disease that can be inherited, with a very varied symptomatology. This made us feel the need to test our son Donato also.
Donato did not have the same symptoms as Rosella. He had back pain, sometimes his arms, legs, neck, etc. but the Doctor’s answer was always “this is growing pains”. From an early age, he had occasional episodes of lipothymia, for various reasons: a fright of something, nervousness, heat, prolonged standing. After several studies, we were told that he had “vasovagal syncope”. As he got older, he used to be very tired and we were also told that this was because of his age.
He did an MRI in March 2021, his MRI report was: “everything according to normal parameters” but when we sent the images to the ICSEB the diagnosis was completely different. Donato had impaction of the cerebellar tonsils, rotoscoliosis and multiple disc disease. For us, it was impossible to pay for Rosella’s surgery, let alone for two.
We put everything in God’s hands. If it was His Will, He would take us to Barcelona and so it was. We made the decision that this was the treatment for our children. Family, friends, even people who didn’t know us and also the Chiari Foundation, helped us. Incredibly, in six days we were able to collect the amount we needed to cover the two surgeries and also the trip to Barcelona for all the family. God is good and faithful and He proved it once again.
The experience at the ICSEB
We would never have had the courage to make such a decision without Safaa El Idrissi who answered all our questions quickly and in detail and gave us all the help we needed at each moment.
The day before the surgery we had the consultation with Dr. Fiallos and Safaa. We were much surprised by how detailed and protocolized the assessment was, how they registered all the information and, also, by the warmth and good humour with which Dr. Fiallos did every test, making the moment more pleasant and bearable. At the end, Dr. Fiallos gave us a very detailed explanation of each patient’s diagnosis. We were surprised by Donato’s case. His disease progressed a lot but quietly not as in the Rosella’s case, which was more visible by the variety of symptoms. If we had listened to the diagnosis we received in our country, Donato would have continued to get worse. Dr. Royo also greeted us and explained to our children what would happen the next day with a lot of love and using simple terminology.
The service / attention was impeccable: punctuality, highly trained and prepared professionals but also respectful and sensitive, warm and aware of the burden with which patients and relatives arrive to the ICSEB. They even showed us a simple animated video where we could see how the surgery would be performed (suitable for children to see). We could ask questions in order to be calm and confident for the surgery.
Both surgeries were performed as scheduled on the morning of September 2 at Cima Hospital. By the grace of God, everything went fine and nothing happened. After we were in our hospital room, Donato and Rosella were able to get up and walk. From that day on, Rosella was able to sleep well again. She regained her sleep and the urge to go to bed and being able to sleep (things that seem so common but when you lose them you realize their great value). Dr. Fiallos and Safaa came to the hospital within hours after surgery to see how they were doing and did a comparative neurological assessment and there were some positive improvements. The surgical wound was minimal, easy to care for, did not require removing stitches, and in fact, after a few months, it is not even noticeable. The recovery was excellent.
We are more than grateful to our Heavenly Father for proving His love, power, and faithfulness through this test because He has given courage, strength, and peace to both our children and us. We would also like to thank all the professionals we met at the Institut Chiari and the people who helped us to provide our children with the best treatment in the world.
We encourage patients and family members to seek information and advice on all the options for making an informed choice. In times of distress it is when one is most vulnerable, everyone gives their opinion with good intentions but it is a great responsibility to decide on one’s own life and even more so on the lives of our children.
We are grateful to have gotten to know the Institut Chiari de Barcelona on time!
“YHVH is good, He is strong in the day of distress, and he knows those who trust in him” The Bible
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