Diagnosed Cervical Instability

Swim15

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This is apparenrly much common than people think and most people with neck pain have some amount of instability.

I just spent 7 hours yesterday having imaging done and going over things with the doc and Ive got major instability between C-0/C1 and some between C1/C2. Atlas is about 5.5mm off of where it should be with ~3mm overhang on lateral flexion from laxity as well.

I went to Caring Medical in Florida after talking with a number of clinics nationwide and Dr Giletes office in Spain and felt that caring medical was a good medium of expense, ease to get to, knowledge, etc since they see people from all over the world.

Caring medical was the only clinic I talked to with a screening process and multi-step at that.

Overall I was impressed which doesn’t happen much - only one other time my 4-5 years of docs. They were incredibly thorough and did maybe 20 sets of imaging for the optic nerve, pupillary size and reflex, vagus nerve imaging, internal jugular vein imaging in multiple sitting and supine positions including the position I sleep in which was interestingly enough the worst one. They also image cerebral arteries and measure rate of flow to help determine intracranial hypertension. In addition to these, they do autonomic feedback testing in multiple positions, digital motion X-ray, and 3D cone beam scan.

All in all, I’ve got a dilated optic nerve, around 50% vagus nerve deterioration, occlusion of the internal jugular veins with my left being severe, and intracranial hypertension along with obvious structural deviations on imaging.


So their approach seems to work well and they are more than happy to work with other clinics local to you if you are from out of state or out of the country. Putting money in their pockets doesn’t seem to be the goal and they’re more than happy for people to get treatment elsewhere and help coordinate that if they can.

So, prognosis is good from what they told me. They start with cervical curve correction using cervical weights primarily and the nurse that was with me said they see incredible results with the fastest curve correction he has seen being completed within a month. He speculated that mine would probably take around 3 months.

After, or in conjunction depending on the case, curve correction they begin treating with prolotherapy primarily. They do use PRP and stem cell but they said they find it’s unnecessary in most cases. They have sent people for spinal fusion but they said they see more cases of people after fusion than I would believe and they reserve surgery for the most severe rare cases - said they’ve only sent a handful of people before.


This is the last thing I wanted to hear but I’ve had cervical pain now for a long time which, at this point, appears to be secondary to mold exposure.

I think this also explains some things that haven’t been answered by other diagnoses. I am likely going to send my results for a 2nd opinion for good measure but right now my plan is to go back in 2 weeks for a first round of prolo and get fitted for cervical weights. Ideally gonna attack this as much as I can for at least 3 months, full treatment being around 6 mounts, and evaluate results along with the other stuff I’m doing for treatment.
 

Wayne

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Caring medical was the only clinic I talked to with a screening process and multi-step at that.
Thank you @Swim15 for this great description of your visit with Caring Medical. It's been high on my priority list make a visit to them this year, and the information you provided is very helpful.

They were incredibly thorough and did maybe 20 sets of imaging for the optic nerve, pupillary size and reflex, vagus nerve imaging, internal jugular vein imaging in multiple sitting and supine positions...
How much did this all cost, and does your insurance (or Medicare in my case) cover any of these tests? I'm also interested in what kind of imaging they did. I've heard MRIs can be very loud, and have concerns they would be too much for my fragile ears.

Thanks again for all the great information, will be a catalyst for me to take my next steps...
 

Swim15

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The imaging is listed above in my post

“ Overall I was impressed which doesn’t happen much - only one other time my 4-5 years of docs. They were incredibly thorough and did maybe 20 sets of imaging for the optic nerve, pupillary size and reflex, vagus nerve imaging, internal jugular vein imaging in multiple sitting and supine positions including the position I sleep in which was interestingly enough the worst one. They also image cerebral arteries and measure rate of flow to help determine intracranial hypertension. In addition to these, they do autonomic feedback testing in multiple positions, digital motion X-ray, and 3D cone beam scan.”

They’re private pay so no insurance. The full work up wasn’t cheap but not absurd either - $2650.

Seems like more and more people are ditching MRI for DMX and 3D cone beam
 
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Thanks @Swim15 I’m still relatively new to cci. Dr G in CA is convinced I have it and I got a consult from Dr B in NY, but have run into logistical issues (can’t get clarifications on further scans they requested).

I’m pretty terrified of surgery seeing as I’m already pretty weak, but with my mcas so severe and sometimes worsening, I worry I don’t have time need to do something drastic.

I have misgivings because traction doesn’t give me any benefit. I wish caring medical was further north. I travel very badly, otherwise I’d love to give them a try.
 

Swim15

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Thanks @Swim15 I’m still relatively new to cci. Dr G in CA is convinced I have it and I got a consult from Dr B in NY, but have run into logistical issues (can’t get clarifications on further scans they requested).

I’m pretty terrified of surgery seeing as I’m already pretty weak, but with my mcas so severe and sometimes worsening, I worry I don’t have time need to do something drastic.

I have misgivings because traction doesn’t give me any benefit. I wish caring medical was further north. I travel very badly, otherwise I’d love to give them a try.
Yeah I get that man, I really wouldn't consider surgery unless you absolutely had to have it in a life or death situation. Just talked to a guy in that position within the last month but other people should definitely do regen treatments.

If you can locate somewhere near you that does DMX I would go that route and then do a tele-consult with Caring Medical, Dr Hanson, Centeno-Schultz, or any place like that
 
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Yeah I get that man, I really wouldn't consider surgery unless you absolutely had to have it in a life or death situation. Just talked to a guy in that position within the last month but other people should definitely do regen treatments.

If you can locate somewhere near you that does DMX I would go that route and then do a tele-consult with Caring Medical, Dr Hanson, Centeno-Schultz, or any place like that
DMX?
 
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Does caring do teleconsults? Last time I spoke with them they didn’t seem interested in helping people get treatment unless they came to fl. But I might not have asked thoroughly. There is a place that does Dmx nearby. I don’t know how much they know about chronic illnesses. I think they deal with more accident victims.

i hadn’t heard of dr Hanson. Is orthocure his site? If so I’m rather confused about what treatments he actually offers.
 

Carl

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This is apparenrly much common than people think and most people with neck pain have some amount of instability.

I just spent 7 hours yesterday having imaging done and going over things with the doc and Ive got major instability between C-0/C1 and some between C1/C2. Atlas is about 5.5mm off of where it should be with ~3mm overhang on lateral flexion from laxity as well.

I went to Caring Medical in Florida after talking with a number of clinics nationwide and Dr Giletes office in Spain and felt that caring medical was a good medium of expense, ease to get to, knowledge, etc since they see people from all over the world.

Caring medical was the only clinic I talked to with a screening process and multi-step at that.

Overall I was impressed which doesn’t happen much - only one other time my 4-5 years of docs. They were incredibly thorough and did maybe 20 sets of imaging for the optic nerve, pupillary size and reflex, vagus nerve imaging, internal jugular vein imaging in multiple sitting and supine positions including the position I sleep in which was interestingly enough the worst one. They also image cerebral arteries and measure rate of flow to help determine intracranial hypertension. In addition to these, they do autonomic feedback testing in multiple positions, digital motion X-ray, and 3D cone beam scan.

All in all, I’ve got a dilated optic nerve, around 50% vagus nerve deterioration, occlusion of the internal jugular veins with my left being severe, and intracranial hypertension along with obvious structural deviations on imaging.


So their approach seems to work well and they are more than happy to work with other clinics local to you if you are from out of state or out of the country. Putting money in their pockets doesn’t seem to be the goal and they’re more than happy for people to get treatment elsewhere and help coordinate that if they can.

So, prognosis is good from what they told me. They start with cervical curve correction using cervical weights primarily and the nurse that was with me said they see incredible results with the fastest curve correction he has seen being completed within a month. He speculated that mine would probably take around 3 months.

After, or in conjunction depending on the case, curve correction they begin treating with prolotherapy primarily. They do use PRP and stem cell but they said they find it’s unnecessary in most cases. They have sent people for spinal fusion but they said they see more cases of people after fusion than I would believe and they reserve surgery for the most severe rare cases - said they’ve only sent a handful of people before.


This is the last thing I wanted to hear but I’ve had cervical pain now for a long time which, at this point, appears to be secondary to mold exposure.

I think this also explains some things that haven’t been answered by other diagnoses. I am likely going to send my results for a 2nd opinion for good measure but right now my plan is to go back in 2 weeks for a first round of prolo and get fitted for cervical weights. Ideally gonna attack this as much as I can for at least 3 months, full treatment being around 6 mounts, and evaluate results along with the other stuff I’m doing for treatment.
I get neck pain when my body has insufficient magnesium. Taking a large dose, 1200mg+ of magnesium eliminates any pain and discomfort. I used to take around 2 grams at a time but cannot do that now because of health issues.

Also Glycine is a semi essential amino acid which is involved in so many different process within the human body. It is the most common amino acid in collagen which is used by most tissues. It is also the most used amino acid in amino acid conjugation and detox and elimination processes are one of the bodies main priorities after defence. For any body who experiences CCI they might have a genetic problem which means they are unable to manufacturer enough Glycine to meet the huge demand.

There is an article on pubmed about Glycine and the bodies inability to produce enough of it.
A weak link in metabolism: the metabolic capacity for glycine biosynthesis does not satisfy the need for collagen synthesis
https://pubmed.ncbi.nlm.nih.gov/20093739/
https://www.ias.ac.in/article/fulltext/jbsc/034/06/0853-0872

Glycine is the most effective amino acid to stimulate Orexin synthesis. Orexin, also called hypocretin, is a neurotransmitter that regulates arousal, wakefulness, and appetite. Glycine is also our buffer for excess methyl groups. Glycine (and to a lesser extent taurine, glutamine, arginine and ornithine) are required for phase 2 amino acid conjugation. People on a low protein diet, and those with chronic exposure to toxins, are at risk of impaired amino acid conjugation due to substrate depletion, particularly glycine. Glycine is essential for collagen production in the body and it appears at every 3rd amino acid in collagen. Depletion due to detox and not enough for collagen production>CCI.

Glycine appears to exert several protective effects, including anti-inflammatory, immunomodulatory and direct cytoprotective actions. Glycine acts on inflammatory cells such as macrophages to suppress activation of transcription factors and the formation of free radicals and inflammatory cytokines.

Glycine is also an Interleukin-6 Inhibitor which can provoke inflammatory cytokines. Glycine also helps to Inhibit TNF alpha. There are many articles on pubmed about glycine and it's anti-inflammatory effects.

Glutamate gets lots of criticism but it is necessary to balance GABA levels and Glycine tends to increase GABA levels. If I supplement more than 5ml of Glycine I will feel very sleepy. If I balance it with glutamine I do not get sleepy. Adding some NAC for Glutathione production.
 
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kewia

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@Swim15,

thanks for the detailed explanation.

but they said they see more cases of people after fusion than I would believe and they reserve surgery for the most severe rare cases
Good to know that CCI fusion require additional treatments after or even can worsen the situation.

The full work up wasn’t cheap but not absurd either - $2650.
Per operation/month/overall?

How you are now?
What symptoms get better.
 

Swim15

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@Swim15,

thanks for the detailed explanation.



Good to know that CCI fusion require additional treatments after or even can worsen the situation.



Per operation/month/overall?

How you are now?
What symptoms get better.
So Ive had a wild experience the last few months and have had two treatments - essentially neurosurgeries - with PRP and stem cells.

The cost for the imaging was a one time workup. The surgeries were 10-12k a piece.

Basically everything got better - brain fog, energy, mental head space, autonomic function has improved and is continuing to improve significantly. Went from not being able to work to starting back at med school in a month which I wasn’t sure was going to be possible.

I’m going to make a more complete post of everything at some point
 
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The cost for the imaging was a one time workup. The surgeries were 10-12k a piece.

Basically everything got better -

I really want to find somebody comparable to Florida...here in my area...I looked it up and maybe some place comparable to Dr. Hauser exists.....

Really it costs that much? Oh Crap.

I own a skyscraper with ten health insurance names on it, and I"m to spend that much money to fix my own neck?

I so resent this.

Last night I really thought maybe that was it, for me. At what point is the instability so bad our heads decide to fall off? Every night I"m in this neck misery....
 

kewia

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@Swim15,

Just one question interests me so urgently that I can't wait:

Could you tell if your symptoms worsened when moving your neck in extension or flexion position before surgery?
 

Swim15

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are you now a dangerous expert on this topic?

Have you run into much background info on this neck alignment stuff? And how correction is possible?
Dangerous expert? I’m a medical school student and I have talked to some of the best docs and upper cervical chiropractors in the nation. The one I go to has dozens of photos of curves that people have corrected significantly - it’s not hard and relatively easy.

Ive been to multiple upper cervical specialists now and they all have photos all over their walls (I’m one of the photos now) of going from a straight neck to normal lordosis. Who’s told you it’s not possible?

Ive got X-rays of my own that show absolutely enormous correction and have gone from straight neck to an almost totally normal curve in a period of 5 months.
 
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Swim15

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Also as an update I am 6 weeks out from my 2nd procedure with stem cells/PRP and I am healing beautifully.

The physician that did my procedure gave me the best medical care I have ever received in my entire life throughout this whole health crisis. Across 4 procedure days between the two separate trips I was either the ONLY patient he treated on the two days I had procedures done or one of two patients. I had his full availability for questions, health history, etc.

Part of his process for treatment involves seeing a team of 6-7 other providers from different specialties and they consult on the case if they find other things that are non-structural that need to be addressed.

It’s been 5 months since my first procedure and still have a ways to go (likely to the fact that I had such severe vagus nerve degeneration and nerves have a 12-18 month healing time) but I have gone from non-functional to applying to full time jobs and am stoked to get back to work!


Ask away if anyone has any questions
 

Swim15

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I really want to find somebody comparable to Florida...here in my area...I looked it up and maybe some place comparable to Dr. Hauser exists.....

Really it costs that much? Oh Crap.

I own a skyscraper with ten health insurance names on it, and I"m to spend that much money to fix my own neck?

I so resent this.

Last night I really thought maybe that was it, for me. At what point is the instability so bad our heads decide to fall off? Every night I"m in this neck misery....
Dude I feel you. I had to sell my home and have $4k to my name now right now after paying out of pocket for the last 4 years. Glad you own a skyscraper lol be blessed