@TML - What you’ve said makes a lot of sense & could definitely apply in your case & others on our forum. Thank you for providiing some good food for thought!
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@TML I still haven’t found a solution, as I am concerned about potential instability and the feeling that something is seriously wrong in the atlanto-occipital (C0/C1) joint area. My skull is in a pathological, strong extension in relation to the C1 vertebra, and according to the findings and the deformation of the AO joint, that position seems motionless and stuck.
Figure 1 shows an angle of 48 degrees between the base of the skull and C1 - such a finding has been repeated in all recordings for the past 9 years. In most other people, this angle is about 35 degrees, which additionally indicates a deviation.
I am also concerned by the fact that C1 has moved forward so much that it visibly narrows the pharyngeal cavity, that is, it presses on the back wall of the pharynx. This has already led to concrete clinical complications during invasive procedures through the mouth and throat.
The first time it happened was 17 years ago, during a routine lower back surgery under general anesthesia. Intubation was not possible in the standard way, so I stopped breathing for a while until they resorted to using children’s equipment. After that, I was kept in intensive care and warned that I must inform the doctors about this before any future intervention.
A similar problem was repeated four and two years ago during gastroscopies - in both cases the probe could not pass through the throat, and the attempts lasted several minutes and were extremely unpleasant and exhausting.
Figure 2 shows an anatomical representation of this constriction.
This is also my information update for this topic.
I must mention that I contacted a neurosurgeon in Turkey and he suggested a styloidectomy and shaving of C1 bilaterally.
So because of the above, I have reason to worry and fear for the outcome of the surgery.
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You’ve done a lot of research into your scans which is great! Sorry to hear that you’re still experiencing the difficulties. I think we have similar situations in that we don’t know what to blame for our difficulties or if it’s a combination of many things - c1 drifting forward, scm tightness/compression, styloids.
One thing I meant to bring up earlier was posture, and I’m not about to insist that our difficulties started due to posture, but I think our difficulties could have resulted in posture that makes things worse. Do you happen to work a job where you’re seated for long periods? I’m a graduate student so I do a lot of sitting. I’ve noticed that i lean forward when working and my neck curve is accentuated (i.e., normal curve but becomes too curved). My theory is that this position puts load on the SCM muscles, shortening them and hypertrophy. Tight/shortened SCM muscles in this position would collapse your neck in the back, making the neck curve more accentuated. If the curve is accentuated than some of the lower neck vertebrae (e.g., c3 of 4 down) shift forward because they are at the peak of the curve. If they move forward and C1 is ultimately attached to them through the chain, then it will move forward. So essentially for hours we are holding an upward head tilt (which is what it kind of looks like based on your sagittal CT with the angle of your skull with c1), with engaged scm, and with accentuated neck curve with slow anterior drift of cervical spine. I think either the styloids are the reason for this posture in the first place (posture that reduces space between styloid and c1) or it becomes implicated due to the forward drift of C1. Basically I think if we can lengthen our spines it could theoretically reduce the drift of c1 and other vertebrae. But performing any actions that lengthen the spine would involve probably cause styloids to be closer to c1 which makes things difficult too.
One thing I find helps my SCMs is lengthening my torso - so basically all muscles between the pelvis and lower ribs. I find if I suck in and pull up with my abdomen and hold it and try to breath at the same time my SCMs become less taught. I think for me personally, it’s almost like my SCMs are getting stretched due to my ribcage and clavicles being pulled down by tight front torso/abdomen, so they contract to try and pull everything up. Basically Ive found them to be much more relaxed when allowing the chest to come closer to the skull.
I totally get your fear regarding the styloidectomy and c1 shave given your concerns. Have you brought your concerns up to the surgeon?
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I’ve found doing a posterior pelvis tilt and pushing pelvis forward helps when I’m trying to lengthen my torso area. The only reason why I’m speaking to the SCMs so much is that it’s something you and I are dealing with that many members here are not!
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I work as a Fire Engine Driver cum Pump Operator and do administrative work in the fire department. So I can work and rest as needed, but there are difficult jobs and moments, but I struggle, suffer pain and cope with limitations and symptoms, I don’t let myself give up, because I think that if I stop, the disease will start to rule with me.
In the warm pool, I do swimming and specific exercises for the back that I have studied for a long time and I do this activity every 4 days. I also use a hydromassage there. Swimming and the pool definitely save me.
My neck is movable only in flexion and extension, very limited in rotation and immobile laterally. Thanks to the stretching of the spine in the pool, I compensate the rotation with trunk movements, so I can drive.
When working at the computer, the monitor must be lowered, so that the head goes slightly down, but that work is done by the cervical spine. If the monitor is raised, there is muscle spasm, worsening of symptoms and cracking in the C1 area.
Any strain of the neck muscles, even the slightest, or activation of the muscles, leads to an increase in the symptoms. Probably when the muscles are tense, venous outflow obstruction occurs.
I permanently use muscle relaxants, because without them I would not be able to sleep due to severe back headaches. Even sometimes, if I am exposed to more activity during the day, the medications do not help, so the pain wakes me up and I do not sleep.
During the day it is tolerable and I can cope with the symptoms. I have learned to live without neck movement.
The head and neck must always be submerged, i.e. covered, because cold or wind leads to spasm, cracking and other symptoms, so you can try to see if it helps you.
It is probably due to the large collateral veins that disperse the outflow into the back of the head, and the veins from that area drain this outflow.
I didn’t talk much with the surgeon who is suggesting the surgery, nor did I express my concerns.
I think I need to talk to a craniocervical instability specialist about this.
I’m having a follow-up MRI of the brain in three months, so I’ll see a clinical neurosurgeon and a vascular surgeon to see what they suggest, and I’ll try to analyze that as well.
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It’s good that you’re being cautious about having surgery @tesla001 - especially because of your cervical spine challenges. You have a very physical job, & I have utmost respect for you continuing to work & finding ways to compensate so you can do your job fully.
It’s odd to me how many different physical ailments are tolerable during the day but become unbearable when we relax to sleep at night. I’ve experienced that w/ ES, my hips & my knees. You’d think being relaxed would help relieve pain, NOT ignite it!
Please let us know what your MRI shows & what the neuro & vascular surgeons suggest.
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Thank you! I do a job I love and it further stimulates me to fight for my health to stay there.
Of course, I will share updates about my medical examinations and experiences.
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I’ll say the same as @Isaiah_40_31 , I’m glad that you’ve found ways to manage your neck & therefor your job, respect to you for doing that difficult work! And thanks too for sharing the info you’ve found out on your journey 
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I also cannot do neck exercises due to pain. I find it is best to support it and leave it alone. I avoid forward head posture if I can, but picking stuff off the ground is tricky.
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They do doppler ultrasound at Cleveland Clinic. I had it done for TOS and failed the test when I was about to pass out with my arm raised. They didn’t get a reading from that side.
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I have had a number of peripheral nerve surgeries just from tight muscles. Unfortunately, based on my experience, I would always recommend removing as much of the offending muscle tissue as possible. Most surgeons just cut or cauterize until they see the muscle release. Most functions depend on multiple muscle groups, so the patient doesn’t really notice any impairment. I had piriformis removed bilaterally and could not tell any difference. I wish more TOS surgeons would simply remove more muscle tissue.
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