Diagnosed Cervical Instability

kewia

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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.
Was your intracranial hypertension permanent before surgery?

How did they check vagus nerve deterioration?

And can this treatment reverse jugular vein occlusion?

Mine did not worsen in flexion/extension, no. Ive spoken with dozens of patients now though and everyone’s - EVERYONE’s - presentation is different
Very interesting, thanks for your answer.
 

Swim15

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Was your intracranial hypertension permanent before surgery?

How did they check vagus nerve deterioration?

And can this treatment reverse jugular vein occlusion?



Very interesting, thanks for your answer.

Define permanent? The intracranial hypertension, vagus degeneration, and IJV occlusion is all caused by the same thing - C1/C2 sliding forward due to ligament laxity causing impingement on the nerves/vessels and interfering with blood flow to and from the head.

So, yes, once the ligament laxity is treated appropriately then those things will reverse.

Caring Medical and Dr Hauser has a lot of information explaining this on their website. I can link one or two things below but there's a lot more. I feel like I have to make the aside note that, yes, there is a lot of mixed info on Hauser and his patient outcomes which I am aware of. However, I do not think it detracts at all from the knowledge/info he puts out and the pathophysiology that he teaches about CCI/AAI.
 
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Swim15

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I mean, if you had constant intracranial hypertension/dizziness or whatever.
I mean yes and no. The pressure was constant physiologically but my symptoms did vary. This is because you aren't in a static position all day long and as your body moves it can impact the occlusions. Other variables can impact it such as drugs (some meds significantly increased it for me), stress, lack of sleep, etc. Its all about your body's autonomic nervous system's ability to manage physical forces, stressors, vasodilation, etc

Here's a couple links that explain these concepts


https://www.caringmedical.com/brain-toilet-obstruction-bto/
 

kewia

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Thanks @Swim15,

what was your severity level before, and what is it now?

Which symptoms still exists and which were gone or improved?
 
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Have any of you heard of a Dr Faheem Sandhu? So maybe over half my family wants me to get invasive traction and the other half doesn’t want me to do anything invasive, the driving force is I’m down to 2ish foods (I can each 2 others on days I take antibiotics). We didn’t have any success using at home traction so we’ve been trying to find someone who knows what they’re doing to do manual traction in me before doing the surgical route. I’ve been trying to get a second opinion from Henderson and to see if he can do manual traction on me but we’re having trouble getting in to see him. I saw someone else mention Faheem Sandhu and was wondering if he was worth try to see for at least manual traction.
 

Swim15

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Thanks @Swim15,

what was your severity level before, and what is it now?

Which symptoms still exists and which were gone or improved?
Dr Hauser ranked me as a 6 on a scale of 1-10 in terms of severity based on everything they see so fairly severe but not coming in in a wheelchair or something like that. I don't have it in front of me but iirc my laxity was about ~4mm in the upper cervical spine.

My case has been complex and I am going to post a more in depth very long review of my journey on one of the main pages. So given that I had 50-60% vagus nerve degeneration there are a lot of things that are still healing - I had mold and lyme exposure as well so there have been a lot of layers to peel back. Currently I am in moderate pancreatic failure which we are working on as well.

All that said, I am MUCH better. I couldn't work 6 months ago and I have been interviewing all week for full-time jobs after deciding to delay medical school one more year (my program has been really gracious with me). Most of the symptoms that are specific to my cervical spine are all gone though. Brain fog has continued to improve, energy, sleep, etc. I expect I'll be back to 100% full health by next spring if things continue the way they are with no restrictions on life.
 

kewia

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@Swim15,

thanks for your detailed answers.
I think it will give us some insights how to prioritize for it.

Waiting for your full story.
Best wishes for your health,

Kewia.
 
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Hey @Swim15 . Did you have chiari malformation or Cerebellar tonsil ectopia? I'm debating on getting prolo myself.


Also what was the schedule like for you at caring? Did you have to stay in Florida for an extended period of time?
 

Swim15

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Hey @Swim15,

How are you doing now?
Hey Kewia - doing alright. I’m currently about 9 months out from my first procedure and 6 months out from my second.

I just had new imaging done by DMX a few weeks ago which actually showed there was still a significant amount of damage and ligament laxity. Definitely not as much improvement as we had hoped for. My symptoms however have continued to improve quite a bit over the past 9 months and really over the past 3 or so since September.

Ive got some genetic stuff we think is messing with my healing but cervical fusion isn’t really an option at my age so I’m looking at another 1-2 procedures (likely using alograph stem cells this time) and hopefully get me into a range of normal stability.

No massive current complaints though. Ive been working full time for the past 4 months for the first time in 5 years. Still have to watch my diet, sleep, and energy expenditure but generally doing much, much better than a year ago