Help Paola Get Her Spine Fused
I've visited Dr. Vincenc Gilete twice already: March and September 2019. He is a neurosurgeon at the Teknon hospital in Barcelona, Spain.
Have you seen the movie “The good, the bad, and the ugly?” If not, then go watch it. It's one of the best Western of all times. At the end of the movie, Tuco, one of the main characters, has a rope around his neck and dangles from a tree. His legs are supported by a creaky, unstable wooden board. A single wrong move could make it topple and kill Tuco.
That’s how I feel 24/7. Like every step I take could end my life.
But my situation is a bit more difficult to fix than Tuco’s: I have cervical instability.
Two doctors diagnosed me with atlantoaxial instability. Which means that my top vertebrae is loose. Additonally, there is a strong suspicion of craniocervical instability which means that the skull is loose, too, and it slides on top of the vertebrae.
What symptoms do I have?
This triggers a number of pretty freaky sensations, among them:
- The feeling of losing control over my limbs. It’s the sensation that my limbs don’t do 100% of what I want them to do. It feels like the first stage of paralysis. Those sensations are subtle enough not be picked up by regular diagnostic methods, but pronounced enough for me to severely limit my quality of life.
- Vertigo and dizziness. This can happen even if I lie down. The vertigo itself is not that bad and one could argue that it even has some entertaining value, unfortunately, it nearly always comes along with another symptom:
- A type of short circuits in my head or seizure like sensations, like a slipping of my consciousness. This is has zero entertaining value, it can happen several times a minute 24/7, and when it happens, it prevents me from doing anything, including walking to the kitchen to cook or even thinking. Wearing a neck brace keeps this at bay as much as possible, but with diminishing results.
- The sensation of a “bobble head”, as if my neck didn't have the strength to keep my head in place.
- A whole collection of other symptoms like fatigue, inability to concentrate, sensation of not being able to breathe, racing heart. If you’d like to indulge into more of the freaky stuff, check out my blog post I wrote on the topic.
All those symptoms make it very likely that my brainstem is implicated, so my neck appears to impinge on the part of the brain which controls breathing and the heart beat among, other life sustaining functions.
The fact that I can control most of the symptoms by wearing a neck brace makes the diagnosis the more conclusive.
Why my insurance won’t cover the costs of the surgery
I've seen 7 local neurosurgeons: none of them is willing or able to recognize the problem nor is ready to do the surgery. From talking to other patients who are in a similar situation, they all agree: there are no doctors in Germany who know how to diagnose cervical instabilities properly.
One reason why many neurosurgeons dismiss my case is that I do not have any pain. Which is highly unusual for cervical instabilities, but not unheard of.
That’s why I had to travel to Barcelona, Spain, to find a specialist who understands the problem and who agrees to operate on me: Dr. Vincenc Gilete. I am immensely grateful for that.
But that means that I will have to cover the costs of the surgery out of pocket.
There is a small chance that I will be able to claim the costs afterwards with the insurance and I have already taken out a policy which would cover the costs of a possible litigation. But even with that, the chances of re-imbursement.
Why I need the surgery
That's how I feel every day: like Tuco with the rope around his neck only sustained by a shaky wooden board. Screenshots taken from “The good, the bad, and the ugly”.
The neck brace allows me to function in the most basic way, but I have to be super careful how I move, and even with the neck brace or maybe because of it, the instability appears to get worse.
The solution is to get the neck fused, making it immobile. In my case it would be a C0-C1-C2 fusion: so my skull would be fused with the two lower vertebrae. This may sound dramatic to some, but it would actually give me more range of motion than I have now with the neck brace.
I have also exhausted all other options:
- physical exercises to strengthen my neck muscles made the situation exponentially worse
- craniosacral treatments had no effect
- chiropractic treatments had no effect
- according to a consultation with a doctor who performs stem cell and PRP injections into neck ligaments to strengthen them, I’m not a candidate for such a procedure
- atlas adjustments with a specialist would first require x-rays performed in a special position which is the one position I can’t do, or I become incapacitated. And it would require a 2 hour drive, which I would not be able to do after those x-rays. There is also the risk of getting worse after the atlas adjustment.
So I’m ready for the surgery. I’m SO ready for it! Even in light of all the possible risks, which are substantial.
The alternative right now is simply not tolerable.
What costs would your donation cover?
The estimate I received are around US$ 71,000 (Euro 65.000). Which in my opinion is a steal for this type of procedure.
Add to it travel expenses, a hotel stay of around 14 days which Dr. Gilete requires before he gives the green light to go on a plane, and the fact that in all likelihood I will be out of commission for a few months, that’s another 10k.
So in total I’m anticipating an expense of around US$80,000.
Has this surgery been performed successfully in the past?
I hope to become another success story, just like them and just like Tuco.
What happens to him at the end of the movie? Tuco is saved by his sidekick, played by Clint Eastwood. Clint shoots through the rope and saves Tuco’s life.
Be Clint, make my day and help me get rid of the noose around my neck.
Help this thriller of a life story have a happy ending.
In immense gratitude – Paola, the Crazy Ozone Lady.