Thread by @__Granuaile__

Covid has been gnawing at my brain since my first infection February 2020.

Over the past 41 months, I have watched helplessly as it ripped apart my brain in various ways leaving me a shell of my old self.

1/25

#LongCovid
#LongCovidBrainDamage

Brain damage has progressed rapidly since 1st scans early '21 w 1st lacunar infarct stroke.

From recent scans:

'cystic encephalomacia of superior R parietal lobe & redemonstrated dilated perivascular space in L basal ganglia'

2/25

'Volume loss'

'Cystic encephalomalacia'

'Dialated perivascular space in basal ganglia'

'White matter hyperintensities of L peritrigonal region & subcortical frontal gyrus'

'Lesions throughout brain, 20'
3/25

'R carotid- Increased thrombosis of medially oriented ica aneurysm measuring 3x4x5 w 3mm neck'

'L carotid- focal outpouching w intimal flap along distal cervical ica aneurysm measuring 9x8x8 w moderate narrowing along proximal lumen'

4/25

'R vertebral artery- focal outpouching along mid v2 segment measuring 3mm'

'Basiliar artery aneurysm- 3mm infundibulum at base of the origin of r sca'

5/25

Aneurysms are inoperable due to ctd hEDS, docs say surgery wd be too dangerous to fix em or save me if they rupture.

Usually, surgery is done when they're >5mm bc risk of rupture.

2 of mine have been that size over a yr now.

They continue to grow larger & change shape.
6/25

'Low-lying cerebellar tonsils, chiari malformation'

'Multilevel degenerative changes to the cervical, thoracic & lumbar
spine'

'Cervical osteophytes'

'Cervical spondylosis & reversal of cervical lordosis'

'Pineal gland cyst with additional growth'

7/25

"Clinical indications due to findings" over past yr:

aneurysm growth
brain mass growth
new onset stroke
suspect brain stem stroke
MS
Parkinson's Disease
Alzheimers
demyelinating disease
progressive neuro deficit
seizures
optic neuritis

8/25

I have ongoing symptoms & deficits that've been attributed to strokes, brain & neuro damage:
L sided paralysis/weakness
Tactile numbness limbs, face, large portion of body
Intermittent tingling & numbness of face, lips, nose, tongue, arms, hands, legs
Swallowing difficulty
9/25

Vision disturbances- nystagmus, blurriness, tunnel vision, light sensitivity
Extreme dizziness - VT was unable to help
Vertigo
Balance issues, I fall over even just sitting up at times.
Gait issues when walking assisted
Extreme nausea & inability to eat, GERD
10/25

Debilitating headaches headaches have lasted 41 months.
Nothing eases it.
NOTHING!
I've seen 7 different headache specialists now.
Can't take most meds. Just Tylenol.

Having a mass, aneurysms & chiari are all huge factors in WHY I can't shake this symptom.
11/25

Tremors- hands shake with slightest amount of use.
It's difficult to use utensils most days to feed myself.

Hand weakness- drop things constantly & w/out warning. I struggle opening simple items.
I've fallen down bc of loosing grip on handrail on stairs many times.
12/25

I went thru months of PT to try to focus on this specifically due to falling down from not being able to hold myself up using my cane or loosing grip on handrails.
I'm getting better but it still happens.

13/25

Neurological pain- debilitating symptoms, many days feels like my entire body is on fire.
My skin hurts.
My spine hurts.
Every joint feels like it's being ripped apart from the inside.
14/25

Cognitive impairment & decline -
I've seen significant decline over the last 3 years.
I recently underwent 2 neuropsyche evaluation testings.

"Major neurocognitive disorder with severe impairments"

Dementia.

I'm waiting to meet again to discuss next steps.
15/25

The cystic encephalomalacia of the right parietal lobe is likely the culprit of much of this.

I have CSF flow issues around my brain & ongoing inflammation.
The softening & death of brain tissue has been seen since scans early '21. Nothing has been done to stop it.

16/25

The CSF flow issues from chiari could also cause additional/worsening symptoms too.

I was told that surgery to fix it is also too dangerous for me due to hEDS & weakened vasculature making surgery too dangerous for me.

17/25

Looking back through all of these ct & mri scans now & seeing the long list of verified anomalies & clinical correlations made at times of scans -
I am even more disturbed at the amount of gaslighting & dismissal I've had from doctors over my ongoing symptoms. Omg.
18/25

How the actual fuck can a doc look through ALL of this and DARE say to a patient their symptoms are due to anxiety?
How can they look at this & suggest psychological therapy as treatment?
Why have I had to fight so hard to advocate for help treating my ongoing symptoms?

19/25

To see that MD's suggestions for treatments & further investigation is needed based on my scans for
MS, Parkinson's, demyelinating disease, Alzheimers, optic neuritis, chiari malformation, brain stem strokes, optic nerve damage, brain mass growth...
20/25

...yet no further investigations were done centering these specific possible diagnoses is upsetting to say the least.

I've been mostly just monitored for aneurysm growth & gone thru some PT/VT for rehabilitation.

The cognitive assessment was done bc I pushed for it.
21/25

Back to my ongoing, progressive brain damage-
the encephalomalacia of the r parietal lobe.
This has been seen on every scan since '21.
This is softening & death of parts of my brain which is permanent & worsening.
22/25
science.org/doi/10.1126/sc…

With the new publication & research showing that this is being found more in post covid patients & is permanent & causing severe cognitive decline, many of you are finally listening.

I've been trying to sound the alarm about this for 2 years.

I've been living it.

23/25

THIS is where we desperately need long covid centered research. NOW.

Our brains are literally dying.

WE are literally dying while waiting for treatments.

JFC. This has the potential to happen to every single person who has had a covid infection!

24/25

I've shared my journey over last 3 yrs & will continue doing so until I'm no longer able to communicate effectively.
These threads r probably confusing & pretty angry at times.

I'm trying.
I'm angry & confused abt alot.

Time for new scans!
Wheee!

25/25
#treatlongcovid

Thank you all for your kind responses ❤️

It means so much to have people offer support while I'm going thru this.

New brain scans are done!
Nervously awaiting results.

Pls donate or share to help me raise funds to help me continue my fight. ❤️

gofund.me/6c41f736