I hate how much I’ve been obliged to learn about neurosurgical technique.

#MESpine

Topics include MCAS, POTS and pelvic venous disease, and craniocervical syndrome, among others!

#EDS #MEspine #NEISvoid

The world's such a dumpster fire that I feel bad complaining, but omg my #MEcfs #MEspine is killing me today. Omg my head.

I've rescheduled all of the care to try to make this trip happen in April

Endocrinology busy until August due to clinician shortages which sucks I'm suffering a lot

Please keep sharing so I can meet my GFM neurosurgery goal and survive

#SevereME #EDS #Chiari #MESpine #CSFLeaks #Neurosurgery

Having a functional brain day today. It's fucking amazing. Is this what healthy people have every day?? #MEcfs #MEspine

Caerphilly doctor felt like her head would explode due to rare condition While at a conference in Malta, she was hit by a rare, debilitating brain condition.

Nice story about #CSFLeak.

#MEspine

#MEspine 💔

Hi, everyone! I’m from 🇧🇷. For those who have done crowdfunding for CCI/AAI surgery, could you share: which platform you used, what worked well (and what didn’t), any tips for reaching international donors, anything you wish you had known beforehand. 💙

#cci #mecfs #mespine #hypermobility

Brainstem dysfunction as a potential etiology of ME/CFS and long COVID: A mechanical basis The underlying mechanism of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains poorly understood. Given the dramatic increase in case…

Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME

www.sciencedirect.com/science/arti...

#MEcfs anyone able to help with organising a raffle to raise funds? Helping to spread the word on social media? #MEspine #EDS

Lots of #MEspine info throughout Dr. Yellman’s talk, thank you Jaime for the write-up!

#MEspine

Small study on brain changes in Long COVID with interesting parallels to #MEspine

#NEISvoid

Complication chart. The following stats are highlighted. Of 51 C1-C2 fusions, 7 (13.7%) had revision surgery, 26 (51.0%) had any complication, 17 (33.3%) had recurrent instability, and 11 (21.6%) had loosening hardware. Of 61 cord detetherings, 6 (9.8%) had revision surgery, 25 (41.0%) had any complication, and 19 (31.1%) listed their complication as “other”.

Another important chart: reported complication rates.

It’s striking people feel so positive about their fusions and tethered cord releases despite this. Speaks to how badly this population needs help.

Source: journals.lww.com/jbjsjournal/...

#MEspine #hEDS #CCI

A chart titled “How helpful was your spine surgery?” Cervical Vertebral Fusion (N=51) Cervical Disc Removal (N=53) Thoracic Vertebral Fusion (N=12) Lumbar Vertebral Fusion (N-47) Lumbar Disc Removal (N=35) Cord Detethering (N=61) Options were: Not Helpful Somewhat Helpful Helpful Very Helpful Extremely Helpful For all surgeries, the median response was “helpful”.

Interesting chart on hEDS spinal surgery outcomes from the recent Patel, Norris, Gensemer et al paper, “Orthopedic Manifestations of Hypermobile Ehlers Danlos Syndrome” journals.lww.com/jbjsjournal/...

#MEspine

This is a multi cervical unit. Curious if anyone has used one? Seemingly hard to access. I don’t know much about it or see any actual studies on its effectiveness w/ CCI, but I didn’t search very hard. Anyone want to weigh in?
(Video: @elizabeth.rozet on TikTok)
#CCI #EDS #LongCovid #MEspine #pwME

Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?

PT, PRP injections, etc all very welcome. #LongCovid #mespine

#MEspine ? #CCI #AAI #MEcfs

My Mom Was Diagnosed with Alzheimer’s. Then She Got Better. My family experienced a miracle last year. It began with a tragedy.

Harrowing story of a CSF leak misdiagnosed as Alzheimer’s.

#MEspine

Does anyone have recommendations for YouTube videos on EDS-literate neck and back exercises to strengthen the cervical spine, for someone with mild CCI? #longcovid #mespine #neisvoid

this feels significant

& the possible CCI implications alone

#MEspine

#MEspine

Richelle started sleeping in a hard collar—

Interesting #MEspine note in this:

“We postulate that instability and obstructions at the craniocervical junction may contribute to impaired movement and production of CSF, in turn altering MMP or cytokine levels in either cluster.”

For anyone interested in #MEspine, the new @batemanhornecenter.bsky.socialClinical Care Guide includes an excellent intro (pp38-43).

Highly recommend—it’s the overview patients have needed for years and been forced to scavenge forum posts to try to learn.

Now you can read it in just 6 pages!

Clinical criteria for filum terminale resection in occult tethered cord syndrome - PubMed By applying the study's inclusion criteria and incorporating the novel 15-item scale, surgeons can effectively select candidates for FT resection in patients with OTCS. The observed outcomes in these ...

You may have encountered this already but just in case not!

#MEspine

My suspected TSCS (tethered spinal cord) symptoms are worsening, I now get a painful twinge at the crown of my head with relatively modest neck movements.

This leaves me with a yucky headache sensation and additional fatigue.

#MESPine #TSCS #TetheredSpinalCord #MECFS

I can't remember what being well felt like. I get a random few hours here and there when I feel so much better, although these are few and far between. But, right now, I just cannot remember what being well was. #MEcfs #MEspine

#MEspine

#MEspine pals, if you haven’t read this paper, I highly recommend it

This surgery fuses people’s skulls to their spines to treat a condition overlapping with myalgic encephalomyelitis - The Sick Times A growing number of doctors agree that a minority of people with severe ME are like Brea: Some of their symptoms are caused by cranio-cervical instability linked to connective tissue disorders. Viruse...

Terrific #MEspine article in @thesicktimes.bsky.social !

Craniocervical instability is such a complex topic (literally: neurosurgery!), and I’m so grateful to the whole TST team for their work to give such a nuanced account.