[4mykiddo]

Hi again,

In working through the BP numbers using MAP (mean arterial pressure or Pmean), I can’t recall how significant the difference is when a brachial (arm) BP is taken versus central arterial pressure, but am thinking if compliance fluctuates in someone with EDS/POTS, the numbers might get pretty tricky to calculate (and fast sometimes), so some tracking, if tolerated, over a few weeks might be helpful?

Has anyone tried wearing a pulse/activity/sleep tracker in conjunction with checking BP a few times a day?

Found this article (in case the link doesn’t work, there is a % between “Blood” and “2”):

http://www.cvphysiology.com/Blood Pressure/BP002.htm

[4mykiddo]

IMPORTANT INFO for all patients with Craniocervical Instability (CCI) – please post it online and on Facebook
Points #2 and #7 are the MOST important of all.

1. When they do the flex/ext MRI, the techs usually tell the patients to flex the neck in a way which puts the stress on the mid-lower cervical spine, to check for dynamically herniated disks; this position is not helpful for CCI patients and does not add anything to the regular supine study.

2. If the focus of the study is the craniocervical junction, the correct way to flex is by TOUCHING THE CHIN ON THE CHEST.

3. If the symptoms flare up in the chin/chest position, hanging in tough is worth it, because the surgeon will get the pic with the “smoking gun”

4. MRI upright machines have smaller magnets than regular machines, thus leading to pictures with far less details

5. Upright MRI machines can visualize the effect of gravity on the craniocervical junction (besides and in addition to flexion and extension, which are a horizontal issue)

6. Flexion/extension studies can be done on regular machines with the help of sandbags;
flexion = sandbag behind the occiput, chin touching the chest;
extension = sandbag behind the shoulders

7. Flex/ext MRI studies MUST be in sagittal views and T2 sequences.

Excellent information, thank you so much, Barbara! And for the article posted just below this. Very helpful. ~Worried Mama Bear

[4mykiddo]

Hello everyone,

This is my first post here, but I’ve been reading, reading…and reading some more!

I’m wondering if anyone knows of a facility west of Colorado that does a good job with upright MRI.

Our child has had normal supine MRI and CT. The only finding was a small vascular anomaly commented on as a “normal variant”. Biggest complaint remains headaches and a stiff neck with knots that do loosen with gentle massage and heat. Pain radiates mostly up and over to the eyes with occasional “angel wing” pattern on really bad days.

Kiddo has intermittent diplopia (prisms bilat 20 total, eso) and 2-3mm shifts at C2-3 and C3-4. C-spine MRI is approved and scheduled.

We do have Dr. Diana’s wonderful books, handouts, etc. (Gentle hugs back and huge gratitude for all you do!)

No one yet willing to provide a trail of Diamox, but we remain hopeful. Will decline LP. Relative had massive bruising from a recent TEE that required ENT assessment for tear (negative) and steroids to maintain a patent airway. Discharged three days later from this “routine” check for a prior history, no dilatation.

We’ve not noticed any CSF leakage, but our child has had a few scanty bloody noses from effort at school (ugh…breaks my heart to know kiddo’s struggle). Also has intermittent pulsatile tinnitus, major ear wax buildup, one episode of what was called resolved mastoiditis and occasional fluctuating BP/pulse with associated dizziness and anxiety. Two episodes of lost sensation in lower extremities (one with 8/10 abdominal pain and nausea, one with severe headache) with no noticeable motor function decline in extremities.

Thank you so much to everyone here for posting, replying and helping. Your stories matter and each one has helped us feel less alone with all of this.

I’m still comparing MRI images to those here to see what might look similar to any finding noted. Unsure about the sella or a Chiari 0 or 1; but, will look again at upper c-spine once done before posting images here.

~A Worried Mama Bear who would be on a plane to POTS Care tomorrow if we could in any way make the trip ~ yep, even without an official POTS diagnosis

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