Hello to everyone. Today is my jurney and info of the diagnosis Arnold Chiari Malformation type 1 (short: ACM) and Filum Dissease, decompression surgery, surgery Filum Terminale, symptoms, status and much more. Check Links with my video jurney and other resources.

ACM Neurological and neurosurgical journey

After 12 bad health years at June 2019 neurologist diagnosed me with Arnold Chiari Malformation type 1* (short: ACM) and at the same day sended me to neurosurgeon checkup where they confirmed ACM and sended me home because panel of doctors needed to review my case. Couple hours later I recived a call from a nurse that panel decided for the decompression surgery in the October of the same year 2019. In October 2019 I was hospitalized for a week for the surgery with recovery where everything went well and after which I was sent home. By then most of the symptoms went away but memory and concentration issues remained.

3 months after the surgery I was able to walk and have more activities than before the surgery. Last 2 weeks of February 2020 I was in Thermana Laško spa center for the physical therapy where during harder exercises I started blacking-out/passing-out first time since the surgery and health did not improve anymore but I was still okay. After Thermana Laško at home I continued exercises but arround the April of the same year health went to worse than before the surgery. Again with the MRI imaging and neurosurgeon checkups but everything was okay, surgery was still a success. Only thing they suggested me is to take antidepressants which I refused.

First contacts with the institute

So what now? After ton of research in 2022 we found The Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB short) Spain so I contacted them with brief info about my symptoms, status, etc. via their mail icb@institutchiaribcn.com in english language because the institute works only with Spanish and English language. They responded me in a day and gave me detailed procedure informations. First is free preliminary assessment at distance (over the internet) and they need the following stuff:

  • MRI of the cranio-cervical region (head and c-spine)
  • MRI of the thoracic spine
  • MRI of the lumbosacral spine
  • Scoliogram (x-ray of the entire spine on one film, profile and front view, taken in standing position)
  • A short description of your medical history / symptoms
  • Besides this, you can send all radiological reports and other relevant documentation (undergone surgeries, description of symptoms, etc).

BEWARE that because they work only with spanish or english language, imaging reports and other info you give needs to be in one of those two languages.

All my reports and data was in Slovenian language (because I live in Slovenia, Europe) so I scanned all the documents, used Google Translator to translate it, fixed all the texts as much my not so great english and sended all the translations to a transcribe company for the correct fix. I could have sent Slovenian translations but that way was cheaper. When I got back the documents, I copied content of the each imaging CD of MRIs and X-Rays to to individual folders and with translations I archived it all into one ZIP archive file and sended them the file over WeTransfer website. If you want me to make and video tutorial on how to do copying files, archiving, sending, … write in the comment section of my video. 2 days after my medical reports and images were sended preliminary result confirmed that I am potential candidate for the Filum disease.

What if you are potential candidate for the first checkup?

If they think you are potential candidate then you are invited to neurological checkup on the institute in Barcelona. Brain and cervical spine MRI images needs to be no older than 6 months at a time of checkup. Appointments are on Mondays or Wednesdays mornings and next you set up the date and visit the institute. There doctor will ask you a lot of questions and go through bunch of neurological tests like coordination, pressure points, sensitivityes, walking, … . After that you seat in the waiting room and later called in to the doctors office where you will get detailed report about what they found out and you can ask the doctor your conserns etc.. If surgery is needed you can do it the next day in the very close hospital and wire transfered to their bank accound before the procedure. Procedure price includes also hospitalization, private room (for you and your companion also with 3 meals a day) after the surgery. In my country bank transfer can be done without your bank account but your bank will take your personal info. Post surgery medicines can be bought and payed in the near farmacy. In case for what ever reason you can not do the surgery right away then you can book it for some other date but remember that MRI images needs to be no older than 6 months to the day of the surgery. Filum Terminale surgery is done by the institute neurosurgeon in nearby hospital and no where else in the world. About Tethered Cord Syndrome you can ask your neurosurgeon if checkup and/or surgery is preformed in your country but still you can do it all in in the Barcelona if you decide so. If you have any dissease, you are hurt or anything else remember to tell the institute before you book a date for the checkup and surgery because some issues can make the surgery to be posponed!

Just for info, direct flights from Zagreb to Barcelona are only arround from beggining of May to end of the Semptember every year. I also suggest you book the checkup couple of months in advance so you can find best room and flight. If you are in need for a wheelchair from airport terminal to a plane and in destination country from plane to the taxi for example make sure you notify the departure airport up to 3 days in advance or however your airport operates.

My first flight experience

Checked airplane flights and found direct 2 hour flights from Franjo Tuđman Airport Zagreb Croatia to El Prat Airport Barcelona Spain, then booked the checkup date on the institute without surgery, the plane tickets and hostel room for me and my dad as a companion/help.

Wheelchair waited for me at a terminal and personel pushed me all the way to the plane entry. I sitted in the plane and the moment plane started accending I blacked out, being unconscious for an hour then after few failed waking up attempts I woke up untill plane started decending, again I blacked out and I woke up when most passagers was alerady out of the plane. Because of the blackout my whole body muscless were weaker, made few steps and collapsed between the seats and been unconscious for a minute. Most of the body muscle power dissapared and waited about 5 minutes untill I was able to stand up with difficulty and with my fathers help get to wheelchair, sitted in it and driven to the taxi outside.

First checkup and the surgery

In my case Filum Terminale surgery was needed. Doctor told me my spine is in slight S shape because Filum is pulling spinal column down. Check the video for more information.

We managed to gather the money till the june of 2023 where I booked a surgery date for 06.09.2023. In the morning of Wed. 06.09.2023 went to the institute, signed some papers, later went to the CIMA Hospital nearbay, did some tests (blood, x-ray, …), talked to anestiologists and everything was okay so surgery was approved. In my case EMG checkup was needed because on the images it looked like I have issue with sinuses but checkup was okay. Remember that if anything is wrong, surgery will be posponed to another date and they will tell you everything you need to know. Next morning went back to the Hospital, they prepared me, put anesthesia and few hours later I woke up. Surgery usually takes from 45 minutes to 1,5 hour but in my case was little longer. Then I was transfered to private room in hospital where I stayed till noon next day (friday 05.09). In friday at 11AM neurosurgeon came and did bunch of neurological tests and then I had my last of epilepsy like seizures, blackouts, unability to talk, … for arround 10 minutes and it was last time till today that all those big symptoms went away. At noon Friday discharge papers were signed and went to a pharmacy with my dad. Imidiary person from the institute will say that you take one box of Somazina 1000 mg medicine just to test that there are no bad side effects from it.

In Friday I alerady felt bether, clearer head with less pressure in neck and head. In Tuesday went back for the rest of Somazina medication because I did not have any bad effects and that medication you take for 6 months, 1 bag dialuted in water or juice per 12 hours. REMEMBER to follow instructions to the letter like not taking a shower untill 10 day surgery scar checkup when your or institute doctor allows you to. Also take all the pills, etc. . Just follow the instructions!

Flight back and post surgery

When I went to the flight back from Barcelona I did not blackout during takeoff and decending at all where before the surgery I did.

10 days after the surgery my phisician checked the surgery wound but it was not great so I waited 4 more days changing cotton patch several times a day. 14. day after the surgery my phisician said it was all okay so I was allowed to take a shower and for 10 days I administrated a cream (from Barcelona) to help the wound heal. I was getting bether and bether slowly but when colder unstable weather dropped down I was not as good but still bether then before and still slooowly getting bether.

A month after the surgery as instructed I contacted the institute and I filled an questionnaire, doctor reviewed it and allowed me to start with physical work like cleaning room, very light exercises and such. I do light exercises every morning and evening untill my body allows me and that can be 15 seconds to few minutes. Remember that in your case can be different.

Pre and post surgery symptoms

Before the surgery I had ton of symptoms. For example if I do something and suddently I freeze in place like people with narcolepsy barely concious and if I do not snap out of it I just fall down like a brick or just fall into my self and unconcious/blackout state and with occasional epilepsy like seazures, paralysis of whole body or bellow the neck or bellow the belt on little times when I wake up. During blackout I move my eyes uncontrollably, head violent shakes with strong back head punch on the end of shakes. All this usually went on for arround 30 minutes and it could go up to 1,5 hours. Other times drugged or drunk like state was stronger before the surgery, walking was worse, dizziness, … . If I lied on my back after couple of minutes I just passed out and in tames of being awake I was paralysed in whole body with no movement for minutes or more. Here and there for few moments I can start moving and try to move to my side so symptoms can calm down. In the MRI machine where you have neck support I was mostly unconcious and had barely any moments with and without paralysis. On the end of MRI father held my head away from the table so when I woke up he helped me sit on the table. So when I was not feeling good few days ago I lied on my back and after couple of minutes I was paralysed again but without any blackouts. Basically it is way bether than before.

After the surgery few symptoms remained. Memory and concentration is little bit bether, capacity of moving arround, doing stuff, etc. is still veeeery limited. For example one day few glocery stores, next day going with a friend in to the city and maybe 3. day to clean my room a little and roughly for 3-5 days after that just relax, couple of times a day go outside to sit on the porch sofa and such. What remains also is mostly light pressure and pain in head and neck, ringing in my ears tinitus, changing of how good I can see, slight unstable walking sometimes, unable to stand on one leg more than second or two. Also figured out if I lie down on my side, move extended leg up and down for some time I loose power in my muscles and it takes few minutes to recover but possibly makes me worse for days but not confirmed. There is also slight feeling like I am drugged or drunk, etc. .

Expanses in connection of ICSEB institute

  • Preliminary checkup over distance: FREE
  • First checkup on the ICSEB institute: 200€
  • Filum Terminale surgery (if done right after the checkup, checkup is included in the price otherwise you pay both seperatelly): 19.300€
  • Post surgery medicines: approx. 600€
  • EMG checkup: 120€
  • Zagreb to Barcelona return flight ticket for 2 adults: approx. 460€
  • Hostel room, private shower and toilet, 2 beds, 2 days: approx. 170€
  • Hotel room, private shower and toilet, 2 beds, 7 days: approx. 1000€

Guide in other languages

Video version