The Explanation for Everything
If you have followed me for some time, then you may know that I first thought I had Lyme disease, then I thought I had mercury poisoning, then oxalate issues, and in between all that I also thought I had a bad case of candida.
Well, as it turns out I never had Lyme disease. That was just a hasty diagnosis a doctor threw at me. A later blood test showed a negative result. I may have had minor mercury poisoning, but nearly five years of uninterrupted Cutler chelation didn’t show any major improvements. The ones I did see were probably because I was engaging in minimal physical activity during that time. I did have oxalate issues for sure, since joint pain and stiffness either vanished or got dramatically better after a few months of eating carnivore. As to the candida: several stool tests have since shown a negative result. I likely had an Epstein-Barr infection, but when exactly, and when and how I got rid of it is not clear (a later blood test only showed traces of a past infection). It’s possible or maybe even probable that ozone had a hand in this but I can’t know for sure.
So after years of looking, searching, ozonating myself, doing all sorts of self-experiments, googling for hours, and years of detoxing toxic metals and whatnot, it appears that I finally found the answer.
And it’s a mouth full:
Atlantoaxial instability with suspected craniocervical instability, suspected occult tethered cord, Chiari 0 malformation, and to top it all off: connective tissue disorder. Which is most likely the root cause of all this crap. Oh, and I also have some weird white lines in my brain which no one knows what it is, but I have lots of it and it’s not normal. Additionally to all that I also suspect intracranial hypertension and there is spinal stenosis visible on my MRIs.
I’m sure you’ve never heard of most of these things, and I bet you’re dying to know what they are.
So let me release the unbearable suspense and explain what the heck is wrong with me:
Upright MRIs of me in laterally bent position. I believe it was those images and the 3D CT scans in rotation which apparently show the AAI of 3 to 4 mm.
Atlantoaxial Instability (AAI)
This describes the situation when the atlas (the top vertebrae) is loose. In a normal human being, when the neck moves the atlas does not, or at most by 1 mm. It stays firmly in place. In my case it moves by 3 to 4 mm.
How was it diagnosed?
The atlantoaxial instability has been confirmed by one radiologist and a neurosurgeon. The diagnosis was done through upright MRI during which my upper neck was either in neutral, laterally bent, or rotated position. Additionally, a 3D CT scan in rotation and also cineradiology (DMX or Digital Motion X-Ray) imaging were performed.
What causes AAI?
It can be caused by trauma (accident), by auto-immune issues like arthritis or psoriasis and the resulting degeneration of ligaments and the vertebrae, by viral infections, or mold toxicity as some speculate. It could also be due to a connective tissue disorder, so a genetic predisposition. This is most likely true in my case. Mercury poisoning and oxalates may or may not have contributed to it. What is also a possible cause is the overstretching of patients’ necks during surgery. Patients who undergo anesthesia need to be intubated. An over-proportionate number of people who have been diagnosed with cervical instabilities report having undergone a surgery before the onset of their illness.
What are the symptoms of AAI?
- pain, either headaches or neck/shoulder pain (migraines during my period. They essentially stopped or went down to zero after I started wearing the neck brace. Other than that I have no meaningful pain. Pain is not one of my problems. Which, apparently, is highly unusual for AAI / CCI.)
- sensation of pressure in the head
- altered vision (blurry vision in my case)
- diplopia (double vision)
- decreased hearing
- tinnitus (ringing in the ears)
- vertigo, dizziness
- dysarthria (unclear articulation of speech)
- dysphagia (difficulty in swallowing)
- memory problems
- difficulty concentrating, difficulty thinking, brain fog
- postural orthostatic tachycardia (POTS) (never got an official diagnosis but my symptoms match)
- pre-syncopal or syncopal episodes
- disordered sleep architecture
- sleep apnea
- head feels heavy
- excessive fatigue
- altered sensation
- paresthesias (tingling, prickling, numbness, burning)
- dysesthesia (abnormal unpleasant feeling when touched)
- change in gait
- urinary urgency and frequency
- breathing problems (especially when lying down)
- sensation of losing control over limbs, or “heavy limbs”
- and more
Pink ones are mine. I don’t have all of those symptoms all the time. They come and go. Some get better, others get worse. Nearly all of them have improved tremendously since I started wearing the neck brace. Some have even completely resolved.
Craniocervical Instability (CCI) [suspected]
This describes the situation when the skull (cranium) is loose. It slides on top of the top vertebrae, the atlas. In a healthy human being when the head is flexed, the skull remains in place. In someone with CCI the skull slides too much on top of the highest vertebrae.
How was it diagnosed?
In my case it hasn’t, yet. For that I would need to do an upright MRI in flexion and extension. And I am deathly afraid of it, since my symptoms spike when I bend my head forward. I am afraid it would leave me paralyzed. But based on my symptoms alone, one neurosurgeon strongly suspects that I also have CCI. A questionnaire showed a 90% probability that my brain stem is involved, which is a strong indication for CCI. Even without a confirmation through an MRI, I am rather certain that I have CCI because I can feel my skull moving when I exert pressure on it. I know, it sounds crazy. But hey, I have a reputation to uphold.
What causes CCI?
The same things that can cause AAI can also cause CCI. In my case it’s likely that it’s the connective tissue disorder which produces crappy ligaments which are not able to hold my skull properly in place. An accident I had as a child which resulted in a fractured skull may have contributed to it.
What are the symptoms of CCI?
Symptoms of CCI are very similar to AAI. Chiari, AAI and CCI are also clumped together under the term Cervical Medullary Syndrome. The sensation of a “bobble head” seems to occur more in CCI patients than AAI.
Based on how the cord hugs the curves of the spine so that it does not lie in the center but adheres to the sides of the spine, depending on the curve, the neurologist determined that this could be a sign of a pulling force. This again would indicate a tethered cord.
This movement of the cord also extends further down.
Tethered Cord (TC) [suspected]
Tethered cord is a “fibrous, collagenous band that connects the conus with the dural sac” [LINK]. It’s the end piece of our spinal cord which is attached to the inside of our spinal column. It is a leftover from our development as children. In a normal human being when during physical growth this tail remains loose. In someone with tethered cord the cord attaches itself to the inside of the spine. This then exerts a pulling force and can contribute to the development of scoliosis, which is an abnormal sideways curvature of the spine. This pull can also lead to parts of the brainstem being squashed and causing all sorts of neurological symptoms.
How was it diagnosed?
It has been diagnosed with the help of MRIs and clinically (looking at my symptoms). A neurosurgeon is of the opinion that it is probable that I have TC. The MRIs show that my cord, instead of lying right in the middle of the spinal column changes direction several times. This is an indication that some pull is exerted on the cord. The only way to confirm a TC diagnosis is to perform a surgery. But even without a surgery I am pretty sure that I have it. I had periods in my life when I could distinctly feel a pulling sensation in my head and neck.
What causes tethered cord?
This is a defect that happens during physical growth. It appears that it develops more often in people with connective tissue disorders. Traumas to the spine are another possible cause.
What are the symptoms of TC?
- cutaneous signs outside on the skin
- imaging on MRI
- back pain
- leg pain
- aches and burns but not sharp
- heavy sensations in the legs
- stiff and tight feeling
- neurogenic bladder (I haven’t been tested yet)
- frequent urinary tract infections
- foot leg deformities and asymmetry
- delayed or plateau in growth
- in infants: decreased leg movement, absent reflexes
- in toddler: abnormal gait or delayed walking (intoeing, loss of ankle control)
- in teenagers: pain, asymmetrical motor dysfunction
- “growing pains” in legs as a child
- a pulling sensation in the spine
- and more
This is a drawing I made, not my neurologist. Consequently, it’s neither accurate nor should be taken as an example of how those type of measurements are really performed. This is just a raw sketch that I drew from memory to show the approximate idea of how this works, but really I have no clue what I’m doing here. So a line is drawn to see if tonsils of the hindbrain touch or cross that line (yellow). In my case the neurosurgeon said they barely touch it, so he classified me as Chiari 0. When Chiari is present there can be pressure exerted on the brain stem (blue). The pressure can also be produced due to an impaired spinal fluid flow.
Chiari Malformation, Type 0
Describes a malformation of the hindbrain or cerebellum. There are Chiari 0, 1, 2, and 3. The hindbrain has so-called tonsils. They are near the base of the brain near the opening of the skull (foramen magnum).
In a healthy human being, those tonsils lie well above the opening. In someone with Chiari malformation the tonsils are situated too low and part of the brain stem gets compressed. Given that this part of the brain is responsible for such vital body functions like heart rate, breathing, blood pressure, body temperature, digestion, balance of water and electrolytes, an impairment in this area can be or feel life threatening.
How was it diagnosed?
This has become obvious on the supine MRI. The neurosurgeon drew a line from one side of the opening of my skull to the other. In my case the malformation is minor, hence the 0 rating. It just barely touches that specific line without crossing it. In people with Chiari 1, 2 or 3 the tonsils can reach much further down.
What causes Chiari malformation?
There are different opinions. Depending who you are asking and which stage of Chiari one looks at, it can be caused by:
- Genes. Some people are born with it.
- Tethered cord. One theory says that the pull from the cord causes the descent of the tonsils. In some cases the tonsils go back into place after a successful tethered cord release.
- Dr. Atul Goel is of the opinion that AAI causes Chiari malformation. He reports that one can observe an ascend of the tonsils after a successful spinal fusion.
What are the symptoms of CM?
Symptoms of CM are very similar or identical to AAI and CCI since the same parts of the nervous system are affected.
Hot stuff, eh? This is just one example of hypermobile joints I was born with. Another one is that I can touch the floor with my palms while keeping my legs straight. No warmup required.
Connective Tissue Disorder
A healthy human being produces strong collagen which makes up ligaments and tendons. Those hold our joints in place. Someone with connective tissue disorder produces collagen of lesser quality. It’s not firm enough. The crappy ligaments and tendons don’t do a good job. The result are, among others, hypermobility, subluxations, or dislocations of joints.
I was born with hypermobile joints. As a kid I was more mobile than others, which gave reason for other kids to be slightly creeped out by me.
How was it diagnosed?
In order to diagnose the severity of a connective tissue disorder one applies a Beighton score.
Depending on how many joints are abnormally flexible and to which degree, one can score higher or lower on that chart.
A human geneticist inspected my joints and my skin and ran a genetic test on me to look for Marfan syndrome. The test came out negative but she has still diagnosed me with Marfan since according to her I show the symptoms.
What causes connective tissue disorders?
It appears to be mostly a genetic problem. There are anecdotes of people whose connective tissue disorder became apparent only after a viral infection. It’s possible that infections can damage ligaments to the point of failure. There is also the theory that mold toxicity could damage heretofore healthy ligaments.
What are the symptoms of connective tissue disorders?
- AAI or CCI
- hypermobile joints
- recurring joint subluxations or dislocations of joints
- slow and poor wound healing
- easy bruising
- scars and bruising on shins
- “paper skin” when wounds heal
- thin, translucent skin
- varicose veins
- skin hyperextensibility
- soft, velvety like skin
- musculoskeletal pain
- arterial / intestinal / uterine fragility or rupture
- poor muscle tone
- mitral valve prolapse
- and more
Pink ones are mine.
So after decades of looking for solutions to my health problems, it seems that I have finally found answers.
And they explain everything.
I now understand
- why I am always blowing my nose. There seems to be an endless supply of snot coming out of me. It’s 24/7, 365 days of the year. Since the urge can come up at any moment, I have placed tissue all around in my apartment: on the night stand, close to my computer, in the kitchen, in the car. In winter everyone asks me whether I’m sick. No, I’m not sick. And yet I always blow my nose. This has dramatically improved with the paleo and now the carnivore diet. But it’s still ever present. What is the underlying cause? It’s most probably due to the spinal stenosis which causes intracranial hypertension. Spinal fluid can’t circulate properly due to a narrowing of my spinal canal. The fluid builds up, pressure increases, and the fluid finds a new escape. This can result in nasal discharge, post-nasal drip, and fluid in the ears. I have all three to varying degrees and at varying times.
- why magnesium before bed would make my heart race and give me insomnia. Normally, magnesium relaxes and helps with sleep. Not so if you have AAI / CCI. Magnesium is a muscle relaxant. With AAI / CCI neck muscles are always tight. They have to be since that’s how your body tries to compensate for the loose ligaments. After taking magnesium, my neck muscles would relax, the instability would get worse, and consequently the dysautonomia which showed itself in increased heart rate, insomnia, and breathing problems.
- why the sun would make me sick. Lying in the sun would make all my symptoms worse. It would turn me into a zombie for several hours afterwards. Why? Because heat also relaxes muscles. What I do now is I put my neck brace on while I’m in the sun and the situation is much more bearable. Saunas have a similar effect on me.
- why I would feel an unbearable pulling sensation in my brain when doing saunas. I remember a time in 2013 when I was doing ozone saunas every day. While in the sauna I would feel a huge pulling sensation down my head and neck. I couldn’t understand what it was. Now it’s clear: it was probably the tethered cord pulling down my spine. The heat inside the sauna would relax the muscles and this probably made the pulling cord sensation more apparent. This is also why I think that a tethered cord is something that the body tries to use to compensate for bad ligaments in the neck.
- why wounds on my legs take forever to heal. Minor scratches on my knees took years to fully heal.
- why I fell down 4 times during a period of 10 months in 2016/2017. Twice it was so bad I had to call the ambulance and they put a cast around my ankle. Back then I already suspected something neurological. Now it all makes sense.
- why I have had episodes of incontinence as an adult. It’s not that I have to run around with a diaper (yet). But when I sneeze or if laugh really hard, accidents do happen.
- why wearing the neck brace has stopped my menstrual migraines. I would get the worst migraines for as long as I can remember. But only during my period. They would debilitate me to the point that I would have to lie in bed for 3 days straight. The slightest movement would escalate them. It was hell. I now either don’t get the headaches at all or they are minimal. Maybe a 0.5 on a scale from 0 to 10. I have been wearing the neck brace for the past 8 months more or less around the clock now. Which means I haven’t bent my neck in that time (apart from the two times when x-rays were taken).This is seriously the most astounding thing. Because if a symptom occurs in a female patient only during her menstruation then the obvious and logical conclusion would be that it must have a hormonal explanation. And yet in my case it had nothing to do with hormones.
- why my blurry vision improved since wearing the neck brace, why everything improved since wearing the neck brace, why when sitting I always try to find some extra support with my hand for my head, and why exercise is making me sick. It’s an explanation for so many other things for which no one ever had any. And it all adds up.
So what is the solution?
Spinal fusion surgery.
Some days I want someone to operate on me NOW, like RIGHT NOW. Other days I think “Hm, maybe I don’t even need surgery …”. But the days when I would like to have surgery are more numerous than the days when I wouldn’t. For now. All this of course hinges on me finding a surgeon who would be willing to do it in the first place.
If it turns out that I have only AAI, then C1 needs to be fused with C2. In the case of additional CCI, then the skull needs to be fused with C1 and C2.
The risks of such a surgery are enormous.
Anything from death, to complete or partial paralysis, going blind or deaf is possible. It’s also possible that the symptoms worsen instead of improving. Even if everything goes according to plan, there may be instabilities developing further down the neck later on which then will require additional surgeries.
What is also often observed is that tethered cord symptoms become worse after a fusion surgery. Some doctors do both together: fusion and a tethered cord release surgery.
But even in the face of all the possible risks, I’d be ready to do the surgery. And then with some luck this could be the final chapter in the Crazy Ozone Lady’s health journey.
Here some impressions from Spain, which is where I went to see one of the specialists for AAI / CCI.
Jennifer Brea was diagnosed with CCI, had her spine fused, and now her ME / CFS is disappearing. She writes about her story extensively and even made a movie. Check her out: https://medium.com/@jenbrea
Jeff Woods was also diagnosed with crushing CFS, and with CCI, had his spine fused after which his symptoms improved dramatically. Until a physiotherapist disattached one of the screws due to a careless maneuver: https://www.mechanicalbasis.org
“Atlantoaxial Instability Causes and Treatment”, https://boneandspine.com/atlantoaxial-instability/
Info about CCI: https://drgilete.com/7-things-know-craniocervical-instability/
Consensus statement about Chiari, CCI, and AAI https://csfinfo.org/files/1613/9665/4797/Final_Booklet_complete.pdf
Video presentation by Dr. Vicenc Gilete on CCI / AAI surgery: https://www.youtube.com/watch?v=nnZ50NOi1Bg
Dr. Klinge’s presentation on Tethered Cord https://ehlers-danlos.com/2015-annual-conference-files/Klinge.pdf
“Ehlers Danlos Syndrome and Tethered Cord Syndrome”
“PWME with CCI, Chiari, Spinal Stenosis, CSF leaks, Vascular Stenosis”
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