u/battlestargirlactica

Hi all. I've had a doozy of a month following an unrelated surgery. In ER four times in July, with two admissions. Eight out of twenty days in a hospital because my body just became Pandora's box.

Last stay, they discharged me despite being failure to thrive, unable to stand or walk short distances unassisted due to blood pooling, atrophy and coordination issues with legs that feel like sandbags.

I'll try to limit full load of timeline, but sharing a condensed chain of events that led me here, and wondering if anyone experienced similar, whether chain of events or symptoms later on.

1. Cervical spine instability worsened by being intubated for surgery, likely hyperextended my hEDS neck.

2. Slow healing, faulty connective tissue and a faulty liver enzyme -> slow clearing of all the surgery & post-op drugs -> felt like resedated days later and like system compounding everything, preventing regular daily meds to work.

3. That kicked off a multi-system circus. MCAS first, then it fueled a POTS flare that changed types & had me in crisis due to excess vasodilation factors.

4. Increased downtime + heap of symptoms to manage while still recovering from surgery itself, dehydration and inadequate nourishment for recovery set in. Could not keep up with needed amounts of electrolytes or protein. Muscles atrophied -> body burning itself for energy.

5. Neck weakened; sense of compression internally, aggravating vagus nerve and both elongated styloid processes, presumably based on collective symptoms to follow. Pressure at slightest touch along back of neck where vagus lines start, and in occipital area between base of skull and C1, builds throughout the longer it's pressed or against certain pillow or bed.

6. Zaps inside head, strong tugging sensation in center of skull, back of sinus cavity, Eustachian tubes and negative pressure in ears needing relief by pulling earlobes, far back of tongue, throat, esophagus... all felt like a rope or hand inside and yanking downward. Spasms in full lower GI or abdomen too. Every sip of water or bite of food painful, and kicks off a chain reaction for hours. I also feel this wave like sensation from my head down my spine and back up, like I'm on a water bed.

7. Head has felt like bowling ball on a pipe cleaner. Dizziness when tipped any direction and if leaned back on pillow too long, spasms, eyes would lose some control as well, some cross or double vision, narrowed eyelids. If tipped down/forward, styloid process seems to press on artery, as BP feel like it's going up and makes swallowing difficult once it relieves after spasming and seizing up as well.

8. Wearing brace/collar last few days has helped minimize occurrences of the compression feeling and symptoms that happen when neck shortened or tipped, but happen when it's not on in the short times I take a break, am changing while trying to keep stable, or on pillow at night if I move or rotate body a little too much. It is largely all relieved though when horizontal overnight.

I do have a couple slightly slipped and bony vertebrae with minimal narrowing, a trace CSF leak c6-c7, c7-t1, and intraosseous hemangioma in T1.

No one has mentioned chiari, but I just remembered the other day it's among the co-occurring conditions among us zebras and wondering if it is the missing link that the providers here aren't catching because they're largely unknowledgeable of EDS, Dysautonomia, CCI etc.

Image reports the last few weeks all state "no major change" compared to past, but only note one or two minor symptoms, not the worst, so idk if they're really investigating. Also, lack of upright imaging in state doesn't help. However, looking at recent CT and MRIs from the last few weeks, it appears as though my cerebellum is a little lower past the line of foremen magnum even while supine.

I didn't include images d/t group rules. But does this sound akin to anyone else's chiari experiences with or without c-spine instability?

Anyone else hear them outside in NW Tigard/S Beaverton 10min ago?

Can anyone help grab an image of this paper? The section at bottom "Hearing on Killing Continued."

https://www.newspapers.com/newspage/376943069/

I'm trying to find any others related to it and the obituary of M, if any. The man mentioned is also long deceased, so no living folks' info is involved.

I had to cancel my 12 week appointment last month, after my back gave out a couple hours before needing to drive there. The few weeks beforehand are always tough with it waning, so having to push the appt out an extra 3 weeks because of scheduling conflicts on both sides... OOF.

The injections not only hurt more than usual on all my left side's sites, but after waking up today and heading downstairs to my SO and kiddo, I sat on the couch, and then BAM. Worst migraine and rapid symptom onset since starting Botox treatment last summer. So awful.

If you get injections as well, do whatever you can to not reschedule more than a few days or week max. 😭