Karol Putra. Arnold Chiari I malformation, Idiopathic Scoliosis, Cord Traction Syndrome. Descent of the cerebellar tonsils (DCT).

Published by at 22 July, 2016

Surgery date: December 2012


2009- 15 years old
Routine check up at the Children’s Hospital of Białystok (Poland) – annual cardiology check up due to the long QT syndrome (diagnosed in 2006 when I was 12 years old).
During the check up appointment I mentioned having very strong and fairly frequent headaches that would trigger blurry vision, vertigo and that would appear above all when bending downwards or sneezing. I was referred to a neurologist who requested a cranial MRI that showed an Arnold Chair malformation type I. The cerebellar tonsils were some 10 mm below the foramen magnum.
Symptoms: very strong pain in the back region of the head, blurry vision, vertigo that would last for several seconds and a feeling of fatigue that would accompany me almost at all times.
Diagnosis: Arnold Chiari I malformation – cerebellar tonsils 10 mm below the foramen magnum.
Medical recommendation: neurological check up within one year.
Treatment: none

2010- 16 years old
Routine check up at the Children’s Hospital of Białystok (Poland) – neurological annual check up, cranial MRI.
Symptoms: very strong pain in the back region of the head, blurry vision, vertigo that would last for several seconds and a feeling of fatigue that would accompany me almost at all times.
Medical recommendation: neurological check up within one year.
Treatment: none

2011- almost 17 years old
In February, after spending a few in days in hospital for some cardio check up exams, I had to return to the ER due to an indescribable headache.
Symptoms: very strong pain in the back region of the head irradiating into the neck and eyes, tinnitus, discomfort with light and noise, trouble to concentrate and reason, severe memory problems – when opening the cupboard to get a mug I wouldn’t remember what I wanted to get. On top of that I was really tired due to the lack of sleep, it was really easy to drive me up the wall, this would trigger rage and depression onslaughts. I opted for admission at the hospital after few when I realised that I couldn’t remember half of the days, I felt as if I was on a big wheel not able to walk straight.  I was discharged ten days later when the symptoms decreased and I went back home.
Diagnosis: Arnold Chiari I malformation – the MRI could not be done due to a broken scanner, electrocardiogram, fundus occuli, general ophthalmological exams.
Medical recommendation: neurological check up within one year.
Treatment: none, however due to my mother’s insistence I was prescribed Nootropil for concentration and memory, I took it during a month, but I didn’t note any improvement.
That’s when my troubles to focus and of the state of psyche increased. I was unable to study. I was diagnosed with a severe depression that was treated without anti-depressants (I can’t take any because of my heart condition).

2012-18 years old
I grew 2 cm during the summer and that is when my symptoms got worse.
Symptoms: very strong pain in the back region of the head, trouble to concentrate and with the memory, bad articulation, trouble with my ears, often I wouldn’t hear what I was told or understand something different. Between summer and December, some five months, I would wake up increasingly with strong headaches that did not allow me to lead a normal life. I was not able to get up, because every movement, every noise and every bit of light triggered pain. The only thing that I was able to do then was to sleep.
That’s when I started to search the Internet for a solution and I found the Institut Chiari & Siringomielia & Escoliosis de Barcelona. I quickly decided to write to them. I got the magnetic resonances of the thoracic and lumbar spine that were missing to complete the diagnosis and it turned out that I was a candidate for the surgery.
Diagnosis in Poland: Arnold Chiari Malformation I, cerebellar tonsils below the foramen magnum by some 14 mm.
Diagnosis by Institut Chiari & Siringomielia & Escoliosis de Barcelona: Only at the Institut they did complete neurological testing that showed the lack of plantar reflexes and the little grip strength in both hands. Apart from the Arnold Chiari I syndrome they also diagnosed a mild idiopathic scoliosis, that could have had the same cause as the Arnold Chiari I syndrome.
Diagnosis: Arnold Chiari I Syndrome, Discopathy C2-C3/C3-C4/C4/C5, C5-C6/C6-C7, cervical isquemia-oedema, dorso-lumbar scoliosis.
After surgery:
The neurological testing was carried out again and the outcome was that the grip strength had increased, the reflex of the left foot had been normalised and improved in the right foot.

Information for those considering having surgery:
I confirm sincerely and without exaggeration that the headaches have disappeared.  One month after surgery I had a bad week, but nothing else and up to date nothing has come back. I sleep much better, 7-8 hours of sleep allow me to function normally during the day and taking a afternoon nap don’t bring clumsiness about anymore, on the contrary, I rest properly. I am so much more energetic and feel like doing stuff. I can focus better; reading isn’t a problem anymore. Going to school is a pleasure now as I am capable of thinking and reacting as everybody else, my memory doesn’t fail and I get good grades.
I can even do different things at a time, my pronunciation is better and my eyesight does not fatigue. I can move my head without problems, before surgery those movements triggered pain at the back of the neck. The vertigo hasn’t appeared again; now, even I change my pose abruptly, i.e getting up quickly from bed, I am fine and don’t lose my balance. Last Christmas (eleven days after the procedure) I was able to sing all the Christmas carols with my family. The year before I had to interrupt the singing all the time because my head was aching.
Institut Chiari & Siringomielia & Escoliosis de Barcelona is a professional centre that treats Chiari patients and other related diseases. The members of staff do a great job; they offer detailed information to the patients regarding the surgery and how to care for themselves afterwards. The atmosphere is very nice; the doctors inspire confidence. I am very grateful for their work and the research they are carrying out over so many years and especially for their desire to reach patients all over the world.
Anyone who suffers from Arnold Chiari and is not able to lead a normal life due to the symptoms that come along with it should try to raise the money for surgery, because this kind of procedure can only be done in Barcelona. It’s really worth it! My scar, four months in now, is only 4-5 cm long and it is very well.
I am aware that every case is different but his surgery always brings benefits. Sometimes more and sometimes less, depending on the state of every patient, but in my case it was worth it.

Testimony update: July, 2016

3.5 years after surgery I have decided to add an update to my story.

I wrote my first testimonial 4 months after surgery and in that I mentioned that I didn’t feel any symptoms of my illness. Unfortunately, recently the headaches reappeared in the occipital part. They appear only when I’m very tired, have a cold or after intense physical effort. I am also allergic and because of respiratory problems I sneeze very frequently, so during the summer, pains appear several times a week. However, the pains are much less intense than before surgery. These are mild and very short and last a few seconds. In the worst case – for example after an intense physical effort, the pain can last for half an hour (this happened only 2 times during these 3.5 years) – before surgery, with a slight effort, the pain lasted all the day. The difference is huge and I can say that practically I don’t feel my illness. Overall I feel pretty good.

One year after the surgery I got MRI done for the check-up, where a slight rise of the cerebellar tonsils could be observed- about 2 mm (14 to 12 mm). This year I am planning to get a new MRI. When I have the new results, I will update my testimonial.

Although, one of the symptoms is back, I’m still very satisfied with the results and I still recommend the SFT to everyone.

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