Anna Maria Bernardi. idiopathic Syringomyelia, Scoliosis and Medullary Traction Syndrome.

Published by ICSEB at 15 February, 2011

Date of the intervention: November 2010

My name is Anna Maria Bernardi and I would like to share my testimonial for other patients to understand how hard it is to live with such a rare pathology and for others to find the strength to fight against an unknown disease in Italy, my country: the Arnold Chiari Syndrome. 10/2010: I officially discovered that I had Syringomyelia. Since some years ago I had been suffering a number of symptoms from which I did not understand its origin (idiopathic symptoms): loss of conscience and of balance, sudden headaches, repeated stiff neck, cranial pressure, difficulty in limb coordination, concentration problems and sometimes of expression, pins and needles in right hand and foot, problems with the cicatrisation of minor injuries, as well as some less frequent but real symptoms, which made my days difficult but for the rest were subjective.

My troubles started when I was 25 years old, after my first labor: strong back pain, vertigo, loss of consciousness and absences. I started visiting specialists in different hospitals showing images of the lumbar-sacrum region, from which different herniated discs turned out. Result: abundant administration of AINES, cortisone and physiotherapy sessions.

In 1989: I had a traffic accident with subluxation of the first cervical vertebrate and other two crushed vertebrae, high fever, vertigo during various days, I was obliged to wear a fixed orthopedic neck brace during 7 months. At the end of this period I noticed numbness on my left side with loss of sensitivity during approximately a year and a half and an increase in the fainting and joint pains, tachycardia and pulmonary pain. Result: The doctors there also suggested me to take analgesics and for the tachycardia beta-blockers.
Other problems appeared at the stomach level, so I followed a therapy together with the other ones with a proton pomp inhibitor. My heart pain did not go away; on the contrary, other pains at the level of carotid arteries appeared, followed by a sensation of suffocation.

Over time, apart from the previously described symptoms, severe pain in the trapeze added on, and the sensitivity on the left side of the body was constantly decreasing with the sensation of pins and needles and difficulty to warm up. Result: the doctors did not know how to explain to themselves such phenomenon and continued prescribing me AIMES, painkillers and to sleep benzodiazepines.

However, the phenomenon of sudden fainting with loss of consciousness during long moments, the vertigo, and the strong joint pain increased exponentially along the years. Result: diverse physiotherapy and osteopathy sessions which did not calm the pain but worsened it.
11/2009: mi brother had a traffic accident and his doctor, Dr. Luizza who observed how I walked, recommended me to have a total MRI done. I was skeptical after all the TACS and X-rays I had done before, so I did not believe that anything could change but to feel more calm I had it done anyway. Result: nothing new appeared and the neurosurgeon from the “Sant’Andrea” hospital in Rome who saw me told me “I was someone who could stand the pain and who could take “Lexotan” to be able to sleep since I had the tendency to feel pain”. He also told me I had to have cyclical therapies with AINES and anti-inflammatory because for what he could see in the MRI, could not do anything else to help me.
However, Dr. Liuzza, after studying my cd, recommended me to immediately get in contact with the Chiari center of Barcelona because I had a serious pathology, Syringomyelia. But I did not believe it right away, how was that possible?

So I made an appointment with Dr. De Feo, director of the neurologic center in the Sapienza in Rome. She as well, after seeing my MRI suggested me to contact urgently with Barcelona.

I did all the exams and in September 2010 I decided to contact the Chiari center.

Dr. Royo saw immediately my images and gave me an appointment for October 2010. From what he saw on the cd, the X-rays and the neurologic exploration showed the Syringomyelia and I had to go through surgery quickly since the pathology was already in an advanced stage. So, there wasn’t really a cure but at least the progression of the pathology could be stopped.

I did not decide to operate myself straight away, although the technique was minimally invasive and the team seemed to be reliable, I was afraid of ending up in the surgery room but approximately after a month my pain increased a lot and my discomfort was quite unpleasant such as the fainting, which was now daily, I did not have another option, so I contacted with the Chiari center to set up an appointment for the surgery.

25/11/2010 I had the surgery done and my life changed. I recovered the heat and pain sensitivity in the left part of my body and the strength in my hands, no more pins and needles, nor joint pains in the trapeze, nor fainting.

19/1/2011 after the control visit, everything was working correctly and I started the rehabilitation.

In the past I had been depressed, I cried many times and some I felt cheated by doctors who felt superior, although finding themselves in front of something to which they were not familiar with, they took the risk in spite of my health to make me end up being in a wheelchair.

This is why I want to thank everyone who has participated in making me become how I am now, as I seem to be another person, specially to Dr. Royo, to Ms. Luè, to Dr. Fiallos and all the team from the CIMA clinic, for all the professionalism and humanity.

One disinterested piece of advice to everyone: do not stop at the first medical consultation, always continue to look beyond and trust in what is best for your health.