07/12/2025
*BIG UPDATES* New test results & treatment plan:
I'll make a video later, explaining this more. For now, I'm recovering in bed.
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Opthalmologist:
•Everything clear, no nerve swelling (vision is not compromised).
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Brain:
•Could have intracranial hypertension or small Chiari malformation, but neither are showing signs that require surgical intervention. I'm not a good candidate for shunts/stents anyway, and my vision is not being compromised, so no need. Possible diuretics in the future if headaches don't resolve with other therapies. Lumbar puncture deemed too risky for now.
•Some dural sinuses and that are too small, could be from birth. May be looked at in the future if needed.
•Some crowding at the foramen magnum (hole in the bottom of the skull), possibly due to IIH or borderline Chiari.
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Tethered Cord:
•Possible. I do have symptoms, and doc said almost all EDSers have some extent of tethering. Specialist PT will find out more during sessions, then defer to back surgeon if tethered cord release is needed.
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Lumbar spine:
•L1-S1 (entire lumbar spine) degenerative disc disease, arthritis,
2 bulging discs, 1 torn disc, facet joint syndrome, stenosis
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Cervical spine:
•C2-C7 - degenerative disc disease, facet joint syndrome, arthritis, bone spurs, stenosis, slight nerve impingement, dessication (discs drying out)
•Hypermobility causing vertebrae slippage (too much movement, aggravating other conditions and symptoms in the neck)
•C0-C2 - couldn't get definitive imaging without upright MRI (I cannot have due to spinal cord stimulator). So do I have Craniocervical Instability (C0-C1) or Atlantoaxial instability (C1-C2)? Probably to some degree, but not enough to show spinal cord involvement lying down. Doc's overall summary was that my neck IS hypermobile, but they aren't seeing great long term results with cervical fusions in EDSers, so they aren't doing as many. Mine doesn't warrant surgery, and I never wanted it anyhow. Need to stabilize and strengthen for sure, bc according to him, "this neck won't last another 50 years."
•Loss of natural curvature of the neck + unnatural left curvature likely caused by muscle spasms
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*Incidental finding:
•1.2 cm cyst/nodule on my thyroid. Followup with PCP/thyroid specialist for ultrasound.
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Treatment plan:
•Specialized physical therapy for EDSers (Mt. Pleasant), build the right muscles in the neck
•Muscle relaxers/pain control, estrogen for muscle retention + bone loss prevention & menopause symptoms
•Rx hard cervical brace to stabilize hypermobile neck (do not have to wear 24/7)
•Possible tethered cord release surgery if needed
•No other surgical interventions needed at this time
•Continue conservative plans/rxs for decreasing non-epileptic seizures
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I am so very thankful to have answers, and doctors who know about these conditions (I'll list them in the comments, in case anyone is interested). I know that's a lot of medical terms/diagnoses that probably sound scary. But none of it surprised me, and much I already knew from over 25 years of dealing with this stuff. I am very grateful to have a treatment plan that gives me hope for improvement, and doesn't involve surgery (for now).
I'll ask for prayers that the financial gets worked out (especially since this new specialized PT doesn't take insurance, but doc said she's only one of two people in the country trained for this that he trusts). And for good results about this thyroid nodule. 🙏🏻
