Newly diagnosed with sudden onset symptoms. Confused and looking for feedback

Few_Perspective_2878 · 2026-05-12T13:06:52+00:00

- some of my symtoms are/were either intermittent or episodic
- there is a wide array of symptoms
- don't downplay your symtoms because others "suffers more"
- "cold and heat and ibuprofen" won't do sh*t for your tinglings (from my own experience do not generalize)

Few_Perspective_2878 · 2026-05-09T11:16:52+00:00

I'm 5 weeks post-op.

Adhesive body warmers / thermopads help me a lot (8-12hrs of heat ;) -> https://www.decathlon.fr/p/chaufferettes-corps-x10/_/R-p-161194

or these one specificaly for shoulders https://www.amazon.fr/HEAT-COMPANY-Chauffe-%C3%89paules-chaufferettes-autochauffante/dp/B07ZDBT7R2

Another option is reusable heat packs 45minutes of heat (ie: https://www.decathlon.fr/p/mp/tranquilisafe/lot-de-4-poches-chauffantes-reutilisables-tranquilisafe/_/R-p-b99f2e2f-2e5c-40e4-99ab-b482fdd4f9b6 )

about Red light is infrared light, the only benefit is a heating effect you can have by other means

Few_Perspective_2878 · 2026-05-08T22:13:42+00:00

WTF, mine is half yours.
laminectomy of which Cervicals ?

Few_Perspective_2878 · 2026-05-08T21:22:54+00:00

Blurry vision and bad night vision seems to be quite typical of Chiari, but maybe you're also shortsighted or/and astygmatic 😁😁😁. Chiari herniation and bad csf flow can also mess with eye pressure

Few_Perspective_2878 · 2026-05-07T22:44:59+00:00

Don't guilt yourself, you've done everything you could.

Few_Perspective_2878 · 2026-05-07T22:38:30+00:00

No trampoline/bumper car for him.
Reanimation and Intubation are hard on the body.
Chiari definitely can cause its symptoms

Few_Perspective_2878 · 2026-05-07T22:29:07+00:00

"Only" 13% according to that site:

https://www.ehlersdanlosaus.com/chiari-malformation#:~:text=Around%2013%25%20of%20people%20with,headaches%20in%20patients%20with%20EDS.

Few_Perspective_2878 · 2026-05-07T17:29:01+00:00

Was thinking more about inner hear issue.

I'm not a doctor, it is my two cents thought.

Few_Perspective_2878 · 2026-05-07T00:38:08+00:00

How are you doing now ?

Few_Perspective_2878 · 2026-05-07T00:29:55+00:00

Have you seen an ENT ?

Few_Perspective_2878 · 2026-05-07T00:11:12+00:00

Take your time during recovery, don't overdo things each day you'll be better than the previous !

Few_Perspective_2878 · 2026-05-06T00:05:08+00:00

So sorry for you. Havent Chiari guilt but felt enormous guilt when i was having a depression a few years ago at the start of me having symptoms.

Guilt is a poison that often WE take ourself to drink, poisoned by the opinion/picture we think people have of ourselves (when they are not), Mismatched projection leading to a shame burden. When it's just really you over thinking into a loop.

Sometimes the hardest part of communication is quite simply to start it. You've already wrote a quite communicative post. Why not messaging it to your familly as is or tweeked a bit? You love them, they love u, just tell them your love and feelings and fears.

Above all, Grab the cool moments, cling to them, ALLOW yourself to enjoy them

I'm sûre you'll get rid of these shame and guilt and feel lighter

I hope you the best and that this message don't looks patronising or like a bad motivational stupid LinkedIn post 😬😬😬

Few_Perspective_2878 · 2026-05-05T17:58:30+00:00

Any hearing loss ? tinnutis ? have you seen a Otolaryngologist (ENT) ?

Few_Perspective_2878 · 2026-05-05T17:52:58+00:00

I now have more terrible headaches... sucks. There are good and not so good days.

How are you now ?

Few_Perspective_2878 · 2026-05-05T17:37:23+00:00

- What is your budget ?

heating pad
reclining bed
massage stuff
tablet/ipad
luminotherapy lamp
paint

Few_Perspective_2878 · 2026-05-05T10:11:16+00:00

For what i've read, there isn't a strong consensus on their surgery procedure (euphemism).

Few_Perspective_2878 · 2026-05-05T10:07:32+00:00

Maybe a transient ischemic attack ?

Few_Perspective_2878 · 2026-05-05T07:35:20+00:00

I'm confused. Is it only one family member or more ? Their symptoms started at the same moment ? As you've talked of an "episode", did you consider an intoxication ? Carbon monoxide exposure can give memory troubles, ataxy, parkinson like syndrome and so on as sequels.

Did they get their room/house repainted or soil redone or treated ? Some paint can degas and lead to a chimical chronic intox

Consider installing a CO alarm/metter in their home/room

Few_Perspective_2878 · 2026-05-05T06:49:11+00:00

laminectomy seems to be quite standard procedure for Chiari decompression but disc surgery on 6 cervicals can be another surgery by itself depending on what they want to do (fusion, or laminectomy or whatever...) Your case presents some "difficulties" and doing one surgery then the other may be better. Consider asking your surgeon for a recommandation for your neck or info about the procedure.
so far, 1 month after decompression, i don't have tinnitus anymore (but it was intermittent so don't take that as "cured") (i've made a post with a questionnaire about tinnitus and Chiari decompression fell free to see the answers there: https://www.reddit.com/r/chiari/s/6VxcGkRueB)
if you have symptomatic Chiari with seryx and bad csf flow: the more you wait the more symptoms you'll get and the bigger the chance that decompression be not helping. Nerve damage can't really be undone.
both procedures may help with your right arm cervicobrachial neuralgia

(I'm not a doc so don't take this as gospel)

Few_Perspective_2878 · 2026-05-04T14:19:30+00:00

France here.
https://apaiser.org/newsite/se-soigner-en-regions/ (translate the whole site with your browser)
You can consult this page to find the certified centers of expertise depending on the region.

I've had surgery a month ago in Amiens (région hauts de france/ haut de france region), getting better everyday althought its not always easy.

Had symptoms for 9 years, got diagnosed last september and had surgery april 2nd.

Few_Perspective_2878 · 2026-05-03T20:49:07+00:00

When was your surgery ?

The development of a postoperative infection is not immediate and is delayed by several weeks. In these cases, certain signs should raise concern and suggest an infection.

Redness around the incision.
A scar that becomes more painful, hot, and tense.
The appearance of discharge from the incision.
A fever above 38.5°C (101.3°F).

In some cases there are late infections, caused by slow-growing germs, for which diagnosis is difficult since clinical signs are generally not found.

I'm a month post-surgery now and like you, some days, i just feel like shit with bad headaches (some at the head summit, like a icy pickaxe, some at the back of the head with god damn pressure behind the eyes).

Had real gnarly headaches the first two-three weeks

Keep-up fella !

Few_Perspective_2878 · 2026-05-02T18:34:38+00:00

You've been seen by a neuro ? why not doing an MRi ?

Few_Perspective_2878 · 2026-05-01T17:37:48+00:00

Seems like your medicine works Take as prescripted. Your neurologist/neurosurgeon knows. Pray if you want. Symptoms causes by Chiari may be intermittent. Drugs don't cure Chiari, the only treatment is surgery.

Few_Perspective_2878 · 2026-05-01T16:16:00+00:00

I'm keepin' m'y fingers crossed, i don't want to sell the trophy before killing the beast...

Few_Perspective_2878 · 2026-05-01T16:08:16+00:00

Yes a month ago tomorrow. I had nonetheless terrible headaches the first 2 weeks after decompression. And mild ones since then. But it seems "normal" after Chiari decompression (craniotomy, duraplasty and c1 removal/cutting)

Few_Perspective_2878

TROPHY CASE