Instable spine, Barcelona

Last time I wrote a blog, I wrote about having a functional instability of C1 and C2. I couldn't find any surgeon willing to help me, nobody wanted to take my case due to the complexity and upright imaging was impossible because besides having severe neurological symptoms, I lost my consciousness without wearing the neck collar; every doctor and every radiologist found it too dangerous to perform the tests necessary to diagnose me. 

Eventually a neurologist talked to me and he explained the situation to me. He told me more about the instability in my upper cervical spine and the complexity of the condition. He said he didn't know anyone who was capable of performing this surgery and that I wouldn't find anybody willing to help me. What I needed was a specialized surgeon who did nothing else then performing these surgeries. He didn't know if this person existed. 

With his information regarding my neck, I was able to look for more information and that is how I finally managed to find my neurosurgeon in Barcelona. Every doctor I saw before this neurologist never spoke to me, they didn't look me in the eyes, avoided all my questions, didn't allow me to take off my neck collar and they didn't refer me to anybody else. This meant I always left their office with even more insecurities then before, with not a single answer to my questions and we never had any idea where or to whom we should go to. 

We went to Barcelona for a diagnosis. I knew when I went that I was in a very bad shape and that the surgery should take place relatively short term. However what followed, I had never expected and nobody could have seen that coming. We drove to Barcelona, I chose for going with our own car in stead of going by ambulance. The thing in my case was, my neck needed a certain amount of traction that no collar could optimally provide me. This meant that with everything I did, I deteriorated and never recovered. The situation after the deterioration became my new baseline.

I knew what I had to do to keep things as good as possible, but strangers often made things much worse. Laying me down on a stretcher without the right knowledge would have destabilized me and set off my symptoms. They would have tried to stabilize me without the right knowledge and this would have been very dangerous for me. So where this would seem to be a good solution, for me it wasn't really an option. 

We filled our van with 400 kg of sandbags so the car would react less to the road surface. We also had a camping toilet inside the van. Besides that my dad couldn't drive over 100 km/h because the pressure created by the speed also destabilized me. We did the travel in 7 days. 

Once we arrived to Barcelona they tried to do the imaging tests but this turned out to be impossible. There was no way they could take off my collar without me having severe neurological symptoms and losing my consciousness. They have a special device where they can do the scans much more quickly, making it much safer then an upright MRI which usually takes about 40 minutes. But in my case it was impossible in Barcelona as well. They decided it was unsafe and stopped the procedures. We would meet the neurosurgeon the day after. 

The next day, the neurosurgeon looked at the normal scans which I already had and concluded that my entire cervical spine was instable and that I had had a fracture in C2. Besides that there was a birth deficit in C2 which also created instability. He then did his examinations and came to the conclusion that it was impossible to put a halo frame or a thoracic brace on me. There was only 1 spot left in which my cervical spine was stable, only a millimeter to the side, up, down, front or back and I was immediately gone. 

He saw three bulging discs in my thoracic spine and suspected thoracic instability. He wanted another MRI to take a better look. When they tried to put me in the MRI I started having very severe non-epileptic seizures with a lot of difficulty breathing. I turned completely blue. They called an ambulance and admitted me to the hospital. The surgeon tried to stabilize me but it was getting harder and harder to find the right spot. He had to tie my legs to my chest to get me stabilized and transferred me to the ICU. 

Why tie my legs to my chest? Because of the tethered cord in my lumbar spine the position of my legs affected the instability of my cervical spine. 

I was admitted to the ICU on the 22nd of March and the surgery was scheduled for the 27th of March. Why not sooner? It was Easter holiday and most people were gone, also the necessary hospital wing was closed. I needed a very specialized team for my surgery. My surgeon did everything he possibly could to schedule the surgery as soon as possible, this was the best he could do. He planned everything and only found the last member of the team on the night before my surgery.  So the fact that it could be performed on this Wednesday, was a miracle to begin with. 

The days on the ICU were incredibly difficult. Because of the severity of the instability, my head and legs were tied to the bed and my chest and there could be absolutely no movement. Every time somebody moved me I went into non stop non-epileptic seizures and I choked until they could find my spot again and fixate it in exactly that position. Something which was incredibly difficult to do. Fortunately I made it alive into the first surgery. 

After this surgery I woke up and couldn't move my legs, also I couldn't control my left arm. We had to wait and see if it was a side effect from the surgery because this was a possibility. But after 4 days my surgeon came running in because I should have improved and when he performed traction on my spine I could move my legs again and my arm stopped moving. Through several tests, it became clear my thoracic spine was instable as well. There was a possibility my lumbar spine would be instable but in my case we could only know after the surgery.

Once I woke up it became clear that both my lumbar spine and pelvis were instable and had to be fused with a lot, really a lot of traction. Luckily my second and third surgery were both a great success. 

These were the symptoms I had before the surgeries without stabilization of my neck: non-epileptic seizures, choking, difficulty swallowing, difficulty speaking (dysartria), blurred vision, blindness, difficulty hearing, difficulty breathing, loss of coordination, tremors in my left arm, bad function of my bladder, loss of consciousness, high pressure behind my eyes, high pressure in my ears, high pressure in my head, not being able to sit or walk and severe pain in my neck and head. 

After the surgeries all of these symptoms have been dissolved. I am now recovering. However in the near future it is possible that another surgery will have to follow to solve the problem I have with my veins. 

The surgeries were not covered by insurance, this means we are now in great debt and the ability to pay for another surgery becomes more and more difficult. We started a crowdfunding and without your help, receiving these past surgeries would have been impossible. I don't know how to thank you for your help. We managed to pay for the surgeries by using everything we have, the money from the crowdfunding, a donor who likes to stay anonymous and through loaning a lot of money. 

Our expenses are still growing, we are in Spain for at least another month and I have several treatments and doctor appointments that I still have to do. Besides ofcourse the expenses of our stay here in Barcelona. 

The money problems are ofcourse a great burden on my family. However besides that we are ofcourse all more then thrilled that I finally receive the right care and that my life has been saved. 

Right now we are in Barcelona and I'm enjoying every stage of the recovery I'm in. It's wonderful to have a chance again, a road. The possibility to work with your body again, no matter in what way this is. I'm building something in stead of everything falling apart. I have tried so incredibly hard for these past 5 years but no matter what I did, I only got worse. My surgeon always tells me: you are very strong, your body is very strong, but your tissues aren’t strong at all. Knowing this will help me in the future, I can work with it in stead of unknowingly working against it.

To walk this road now is wonderful and indescribable. For me it is magical. It is a second chance of life and I want to use it for something good.