Thread by @ar_pnw

I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.

Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.

Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.

I will add that a neurologist and multiple radiologists marked my CT as “remarkable”

It took a EDS literate doctor, in this case a neuroradiologist, to spot the clear jugular compression in my imaging.

Back in Oct ‘21 I traveled to NY to have an invasive catheter angiogram - the neuroradiologist made an incision in my arm and leg, feeding a catheter through my veins up to the base of my skull to evaluate flow. And yes, I was awake.

This procedure confirmed that I have severe jugular stenosis via my C1 and tight muscles C2-C3/4.

I became a surgical candidate for a C1 shave / jugular decompression but they wanted to cut muscles and couldn’t explain why my muscles were tight in my neck.

In Nov ‘21 I was evaluated for TOS, ultrasound showed mild compression. Lidocaine was trialed to see if my global symptoms changed - they didn’t, but my arms became slightly stronger.

Doctor said my shoulder and neck muscles are tight to compensate for something.

In the same month I had a virtual consult with Regenexx for craniocervical instability. MRI shows borderline CCI, DMX shows signs of instability but I ultimately need a new DMX.

Doctor said “I think your jugulars are compressed from muscles being tight to stabilize the skull”

Dec ‘21 rolls around and it was this time I realized I have a lot of weird urinary issues - sometimes peeing 3-4x an hour. Leg pain and weakness, muscles twitches, feet are tingly.

I pee sometimes 12-16x a day. Normal is 5-6–7x

In the same month I went to a urologist saying I think I have a connective tissue issue - presented my current findings. And asked for a urodynamics test for urinary issues as I’d like a tethered cord evaluation for a surgeon to review.

Feb ‘22 and I completed my urodynamics. The results as followed…

Detrusor sphincter dyssynergia (DSD) is “associated with neurologic conditions such as spinal cord injury, multiple sclerosis, and spina bifida and some of these neurogenic bladder patients with DSD may be at risk for autonomic dysreflexia, recurrent urinary tract infections…”

At the same time, my lumber MRI shows what *might* be a fatty filum. Again, another indication of a tethered spinal cord

Since this urodynamics, I’ve been thinking a lot about tethered spinal cords and how they can drive a lot of problems. I mean what happens if your spinal cord isn’t free floating? What if it’s anchored down?

See tweet below for ref

And between the research around #longcovid and #mecfs… haven’t we found almost all of these issues listed in the patient population?

Want to know something that will shake you up?

~20 years ago my sister fell ill at the age of 12 following an infection. Couldn’t walk, write, bathe herself.

She was hospitalized for an entire month and doctors said “infection of unknown origin”

She was administered anti-inflammatory meds as a shot in the dark and she started to get better over 6 weeks.

She also GREW 2 inches during that recovery period.

Today she presents with scoliosis, a fatty pad in lumbar region. She also needed leg braces to walk properly as a child.

She even has a deviated ‘buttcrack’ - a clinical sign of a tethered spinal cord

I also present with a huge fatty pad in my lumber region too.

My sister is healthy and living a full life however, she does complain of some fatigue and pulling sensation in her spine here and there.

Her and I think at some point she might need to be evaluated for a TC *just in case* given my current picture.

The reason I pursued this avenue is because in July ‘20 I came across @jenbrea TedTalk and decided to do more research on her.

The more I began to dig, the more I learned that she was in remission of her post-viral ME/CFS after pursuing her case from structural perspective.

Other patients like @jeff_says_that @julierehmeyer and many others have learned they have/had a connective tissue / structural problem following exposure to an infection or pathogen such as mold.

These events triggered a tissue/collagen damaging event = shifting your structure

Studies indicate that if a tethered spinal cord is provoked, it will drive metabolic issues…

“Both adult and pediatric TCSs are likely the result of a relative lack of blood flow to the spinal cord, causing dysfunction in mitochondrial oxidative phosphorylation.”

“The likely reason the syndrome present later and differently in adults is that a secondary threshold of tension or a cumulative effect of repetitive, transient tension is placed on the cord before symptoms are recognized.”

pubmed.ncbi.nlm.nih.gov/20594000/

So far I know one long-Covid patient who’s had a tethered cord release and is doing decent, but he might need regenerative medicine for his mild CCI.

I also know about 20+ #longcovid that have CCI (mix of mild, moderate and severe). They also suspect a tethered spinal cord at play as well.

I hope this thread (while I know is long) is helpful for others who are in the same boat with #longcovid #mecfs #mcas #pots

If you’d like to explore this route, this is an excellent, well structured group that can help you start the process

facebook.com/groups/MECFSBr…

List of physicians around the world that are literate in #pots #eds #mcas #mecfs #cci #tetheredcord

airtable.com/shrxdowGL1Jxaz…