Paola Sacchiero. Cord Traction Syndrome. Descent of the cerebellar tonsils. Idiopathic syringomyelia

Published by ICSEB at 23 December, 2013

Surgery date: october 2013

My name is Paola Sacchiero and I am 52 years old.

When I was 6 years old I began to suffer from severe headaches accompanied by vomiting. I was diagnosed with migraine.

In 2005, I suffered from sciatica. I could not walk due to the intense pain and I underwent surgery for my L4-L5 lumbar hernia.

In 2009 I underwent surgery for carpal tunnel on my right hand and in 2011 on my left hand due to the tingling in my arms and hands, especially at night, but the tingling did not end. In October 2012, I experienced every day: severe headaches, pain in my neck, in my shoulders, in my legs and I couldn’t sleep at night. For a few years, I had been affected by nocturnal apneas, dysphagia with saliva, pills and some solids. In addition, I suffered from decreased visual acuity, left palpebral ptosis, nominal difficulties, loss of balance that made it more difficult to walk; stiffness of the lower extremities when I got up which limited me in going up and down the stairs; polyuria, incontinence, chronic constipation, episodes of confusion and memory impairment. My general practitioner told me to do an MRI of my cervical spine in which I was diagnosed with Syringomyelia from C5-C6 to D1 and a small disc protrusion between C6-C7. Searching on the Internet, I discovered that there was a highly specialized Institute for patients with Syringomyelia, Chiari and Scoliosis in Barcelona. I was reading all the testimonials from people who had these diseases on the website and I recognized my symptoms there. Then I had the confirmation of my diagnosis and, in addition, that I could also be suffering from Chiari Syndrome.

After a few days, I went to a neurologist in my city for a consultation and it turned out that I did not have many neurological problems. I answered that I always had a headache (especially in my neck), especially with every slight effort it seemed that I could explode and I always felt very tired. Then, the doctor prescribed me some blood tests that were normal. I asked if I could have an MRI to see if the Syringomyelia was getting worse as it had been for 6 month. The doctor replied that the control could wait for later. He gave me injections for my depression and topiramate for my headaches. I did the injections but I could not see any beneficial improvements but the topiramate, and from an advice of my GP, I did not take it because it had too many contraindications.

When the neurologist prescribed me the injections, I thought that he did not consider the disease, because a depression is always considered, the condition is not recognized..

In April 2013, my GP asked me to undergo an MRI scan from the skull to the sacrum, which revealed multiple disc disease and Chiari Syndrome type 1. I looked again at the website of the Institut Chiari de Barcelona where I could see that the Sectioning of the Filum Terminale was performed with a minimally invasive technique. I decided to talk to my husband who advised me to talk to his friend who worked at the hospital in our city for an opinion. From the beginning, he was very sceptical and indicated me a neurosurgeon from Paví who performed a sectioning of the filum terminale, but I replied that I had already seen it on the Internet and the technique used in Paví was not the same as that used by Dr. Royo in Barcelona. I accepted the advice to go to Pavia and leave the idea of Barcelona.

In June 2013 I went to Pavia for a visit and I asked the neurosurgeon if he would do a sectioning of the filum terminale and he answered no, that it was not indicated in my case.. He also told me that the most appropriate surgery was osteo-dural decompression. He informed me of all the risks that this surgery entailed. He told me that in Barcelona they also practised the Sectioning of the filum terminale and if I wanted I was free to go to Barcelona, but for him I would only be wasting my time in going there. I trusted what he said because he seemed a calm person. With my permission, he put me on the waiting list to undergo osteo-dural decompression surgery. He told me it would be between July and August but the month flew by and nobody called me.

I decided to send an email to request an admission because lately I was getting worse. The neurosurgeon told me that it did no depend on him and he should call the administration to request it but they confirmed that the list was still very long. Another two months passed but, again, nobody called me.

At the same time, my daughter advised me to call Barcelona to understand if the filum section was really applicable in my case, I decided to accept and called Mrs. Gioia Luè, a very kind and available person, who knows how to make you very comfortable right away. I told her my story and asked her for confirmation, she told me to send my CDs with the resonances through the web. After a while she called me, telling me that the doctor had evaluated my resonances. I had spinal cord traction and I was candidate for the surgery there in Barcelona. I decided to immediately cancel the surgery in Pavia (at the same time they already contacted me to have the operation) and so I went to Barcelona.

They immediately booked my visit for October 23, I underwent surgery the 24th and I was discharged the 25th.

As soon as the surgery was over, I was taken to the room and in a few hours I began to notice improvements. I no longer had problems swallowing, the blood began to circulate in my legs, arms and face, my feet and hands were warm, which did not happen even in the very hot summer months in which they always remained cold. After a few hours I was walking, my legs were so light, and also my arms and shoulders. The headache disappeared and I also recovered the strength in my hands. In the follow-up medical visit, after 40 days, it turned out that I no longer had dysphagia to saliva and solids, the ptosis of the eyelids or the tingling in the upper extremities, I recovered even more strength in my hands, the nocturnal apneas and the dizziness The disease stopped. Before I was discharged, Dr. Royo came to say goodbye and wanted to know how I was doing: I replied that I was fine and I hadn’t wasted my time coming to Barcelona, as the neurosurgeon in Pavia told me; on the other hand, I had wasted a lot of time not choosing this surgery from the beginning.

Many thanks to Dr. Royo, a very humble and humane person, to Gioia Luè and the whole team

Paola Sacchiero

Phone number: +39 3387886270

Mail: [email protected]