When you are receiving your diagnosis of this disease for the first time, I am sure that most of us had never heard of it, «How can they be giving me a diagnosis of something that I cannot even pronounce correctly?» this was one of the first things I thought.
However, one of the things that helped me the most to accept what I was living was to love my body with everything even with Syringomyelia and to be happy despite the situation, to know it better and to understand that, even more rare than this disease was, there were many positive things to get out of it.
The purpose of the videos and texts of these first weeks is to better understand our disease, they will be a bit theoretical but I will try to summarize it in everyday terms so that they are easier to understand, it will help us a lot to remove that fear that invades us by being diagnosed with something unknown. So let’s get started…
What is it? Definition
● Siringo: Cavity
● Mielia: Spinal Cord
● Syringomyelia: Cavity of the spinal cord
Chronic degenerative disease of the spinal cord. In which there is cystic cavitation of the spinal cord.
Cysts in this disease are called Synrix and are filled with cerebrospinal fluid that is normally found around the marrow and brain to provide protection.
Surely, you will wonder why you have this disease, or what happened in your body so that you will develop this disease, there are four causes:
1. 70% of cases: Malformation of Arnold Chiari I
The main cause of Syringomyelia is Arnold Chiari I, congenital malformation. It is a rare, congenital malformation (which is present from birth) of the central nervous system where the tissue of the brain and cerebellum moves into the space below the foramen magnum at upper spinal canal.
2. 15% of cases: Tumor in the spinal cord
3. 10% of cases: Trauma
4. 5% of cases: Idiopathic
It means that there is no scientific explanation to explain why you developed Syringomyelia, it is known that it is generally something congenital (that is present from birth) but there is still no certain explanation. It sounds difficult to be part of this 5% because generally we always look for answers to things, I am part of this 5% however although we do not know why of our disease we must be grateful that we are already diagnosed and therefore we can be better controlled.
They generally begin during the second and fourth decades of life, it is important to emphasize that the symptoms will depend on the size and location of the cyst and not all people will have the same symptoms. There may even be cases where there are people who have Syringomyelia but never develop any symptoms.
● Loss of temperature sensitivity
● Loss of sensitivity to pain
● Neuropathic pain
● Pain and stiffness in the neck, back, arms, legs.
● Limb muscle weakness and atrophy
● Loss of reflexes
● Loss of toilet training
● Severe headaches
The specialist you should consult to be treated is a neurologist or neurosurgeon. An exhaustive neurological examination must be carried out for each patient and a complete medical interview so that together with the imaging studies there is an accurate and complete diagnosis.
The imaging study to diagnose Syringomyelia is: Magnetic resonance (MRI)
If the cause of your Syringomyelia is due to the Arnold Chiari malformation, surgical treatment will be the correction of the malformation and consequently the Syringomyelia will be improved.
On the other hand, if you do not have Arnold Chiari, surgical treatment will focus on the placement of a catheter in the spinal cord to drain the cyst and thus decrease the pressure to which the spinal cord is subjected. It is true that not all are candidates for surgery, this will depend on the size of your cyst, the measures that my doctor managed with me were that a cyst greater than 5 mm can already be considered for surgery.
Why a smaller cyst cannot be operated on? Because we have to remember that in surgery a catheter is going to be inserted into the spinal cord, which is a nervous tissue that governs the functioning of our body, and the smaller the cyst, the more tissue the catheter will have to pierce. and therefore you can increase the patient’s risk of developing worse symptoms than he had.
Something that is often not mentioned in the bibliographies is that even with surgery, the cyst will not completely disappear, since the spinal cord, being a nervous tissue, is almost impossible to return to its original form.
The pharmacological treatment will be to help the symptoms, however it is important to mention that there is still no pharmacological treatment that will make the cyst disappear or reduce its size. So, this treatment will be to improve symptoms but not to cure the disease.
What drugs are used? Please consult your doctor so that he prescribes the perfect medicine for you, since each case is different and they are usually medicines whose doses are different in each person who takes them, depending on age, sex, symptoms, etc.
The most used for Syringomyelia are medications that will help control pain, a strong relationship has been seen between antidepressants and anxiolytics for neuropathic pain. Medicines such as gabapentin and pregabalin are also very commonly used.
Mental health is just as important as physical health and it is not easy for anyone to be diagnosed with a disease, especially that causes symptoms with very severe pain, so I will always recommend that, in parallel with their treatment with the specialist, they seek help from a psychologist, so that in this way it is much easier to accept our condition and learn to live with it.
Articles to read more about Syringomyelia:
● Rare Diseases Research Institute: http://www.sen.es/pdf/2010/Consenso_Chiari_2010.pdf
● National Institute of Neurological Disorders and Stroke: https://espanol.ninds.nih.gov/trastornos/siringomielia.htm
● Osmosis: https://www.osmosis.org/learn/Syringomyelia