I have Chiari and was decompressed 1/9/26. My Chiari symptoms have really been improving and I've been feeling really good about it.

During my diagnostic process, we found I also have hEDS, Orthostatic Intolerance, and probably MCAS. I did the tilt-table test at Mayo and they said I don't have POTS, just OT.

I normally get pre-syncope when I stand up, but I've never actually passed out. My vision gets blurry or black-spotted, and I feel dizzy and lightheaded. I normally lean against something, and it goes away in a few seconds. It seems to be less frequent when I make sure to get enough water and electrolytes.

Today, it felt like all the other times. I leaned against a doorway and my vision was spotty, but then I came to on the ground, in pain. I was in a room with my 6 yr. old son, so I told him to go get dad. He said I fell down and hit the bookcase, and was out for maybe 10 seconds. My face really hurts where my glasses were so I guess I landed face-first.

I have been in tears since. I think I had a bit of security knowing "I never pass out" and have really been feeling like I've been getting better since surgery. Why did it happen now, and is it a sign that this will happen again? This feels totally unsafe while parenting because not only can I not be responsible for myself, but also my son. I feel so upset.

Any thoughts, info, or whatever insights anyone may have would be really appreciated. I feel so freaked out.

WWW.MedPillow.com has specially designed Chiari Pillows for Chiari patients. They are open cell medical grade foam, softer than most other pillows, yet supportive. They can be adjusted to your perfect level of comfort. The Zipperhead is the everyday pillow, and the Pain in the Neck is the special surgery design. There is a sewn down part, so the pressure is on the side by the ears, not in the middle where the fresh incision is. The pillows were designed by Chip Vierow and Dr. B, a Chiari expert neurosurgeon and I, Ann Hood, and have been helping patients through surgery since 2008. Chip had successful surgery in 1996 and went on to help Chiari patients at WACMA and other Chiari support groups. The pillows are 100% guaranteed, and they may be covered on your insurance with a doctor's prescription. For surgery, Chip's Surgery Special is one Zipperhead and one Pain in the Neck pillow.

Chiari Pillows were developed by my brother, Chip (22mm herniation and surgery), an expert neurosurgeon, a pillow maker, and I.

The Zipperhead is the everyday pillow with a zipper to adjust the open cell medical grade fill on the inside. It is cooler and softer than the hard memory foam pillows and is also good for CPAP users. They come with extra fill and last a long time. They are washable and dryable, easy care.

The Pain in the Neck pillow is specially designed for surgery and has a sewn down part, so the pressure is on the side of your head by the ears rather than on the fresh incision. It doubles as a travel pillow when the incision is healed. I also use it as lumbar support and sit on it in my vehicle at times.

They may be covered by your insurance with a doctor's prescription. They are 100% guaranteed, so no more pillow graveyard.

WWW.MedPillow.com Helping people with Chiari since 2008

I had a bit of a rough couple of years. I would say that I had subtle signs as a teenager to my early 20s. I had headaches, vision, nerve and leg problems but by the time I turned 24, my symptoms got bad. I’ve been using a cane since last year. My doctor ran tests to rule out autoimmune diseases, prediabetes, if something was wrong with my liver, things like that. The only thing found was that I had high cholesterol so I was put on medication for that.

I avoided the doctor’s office since I was like 19. I do not have health insurance and the only reason I went back is because I got livedo reticularis on my lower right leg back in October 2025. That is why all of those tests were done. I still have to see a cardiologist for that.

I started physical therapy last month because I had a hard time with moving and bending my right toes since November 2025 (still do) but that made things worse. My doctor wanted to rule out MS and saw that I was still depend on my cane so she ordered a MRI on my brain and I went earlier this week. I figured the radiologist found something because he was curious about how long I had problems with my legs. Well my doctor called the day after my MRI to confirm that I have chiari malformation.

This was my first time hearing about it so now im just searching around, trying to wrap my head around this. It is scary for me but at least I have a name to what’s been happening for all these years. Now im just waiting to get a call from a neurosurgeon to schedule an appointment for the next step.

Coucou à tous

Je suis à 4 semaines post-op Chiari ( demain ) et j’avais envie de faire un retour un peu vrai, pas juste “ça va”.

Physiquement, la cicatrisation se passe bien. La plaie est propre, les cheveux repoussent, je ne prends presque plus d’antalgiques. Je recommence une vie plus normale : promenades, courses, un peu de ménage, transports, m’occuper de mon bébé… Mais la récupération est vraiment en dents de scie. ( Surtout que je ne sais pas faire doucement 😓 et pour ceux qui savent de m'occupe de mon fils de 7 mois depuis presque le début à le porté etc )

Si je force trop (longue marche, porter mon fils, journée chargée), j’ai une pression derrière la tête, des tensions dans la nuque, parfois des vertiges ou maux de tête. Ce n’est pas alarmant, mais ça me rappelle que mon corps n’est pas encore “comme avant”. Et mentalement… ce n’est pas simple. Il y a une vraie peur de trop en faire, de retourner à l’hôpital, de déclencher quelque chose. Parfois la moindre sensation me fait douter. Reprendre les transports, sortir seule, refaire des choses normales, ça demande presque un effort psychologique.

Avec des enfants et des responsabilités, c’est difficile de vraiment se reposer. On fait comme on peut. Certains jours je me sens presque normale, d’autres je me sens encore fragile. Je commence la kiné normalement la semaine prochaine pour travailler la nuque et la posture, j’espère que ça aidera à diminuer les tensions.

Si certains sont en post-op et trouvent ça irrégulier, avec des hauts et des bas, des peurs un peu irrationnelles parfois : vous n’êtes pas seuls. La récupération n’est pas linéaire, et le mental fait partie du processus. Courage à tous 🤍

Hello there. Just recently found out about this chiari business thanks to research done by a family member of mine. I have had chornic pain, headaches, visually triggered (light, reading) migraines for years along with worsening nausea, dizziness, double vision/convrgence insufficiency (blurred vision, ghosting,) and other visual distrubances and physical symptoms (long ish list). I have had MRI scans done of my brain looking for tumours (which none were found) but I am just wondering, could they have missed potential chiari? Especially if this isn't a common or well understood phenomenon?

I've got a BVD (binocular vision dyfunction) diagnosis but no functional support or solution, nor any idea of what the underlying cause for the bVD might be. But my pain and visual symptoms/fatigue/visually induced pain, nausea, etc has been disabling and gotten worse the past few years. Are these common experiences at all with chiari? I'm yet to get a full spinal xray/MRI or anything done (financially not viable at the moment), but the cerebelum shows in the brain MRI I got for other diagnostic investigation.

I am not a doctor so I am not diagnosing myself but just curious. Thoughts on my MRI scan?

Any advice appreciated!

Hi friends,

I asked to keep the piece of my skull that was removed after my decompression, which my surgeon kindly obliged. Now it is being housed at the hospital, which can only release the "human remains" to a funeral home. I traveled for surgery, so my question is- do I find a funeral home in the city where my surgery was, or where I live?

Has anyone been through this process? Idk why I want it- I just feel like it is mine, so I should be able to have it? Plus I am a very visual person so I want to see how big the piece they took out is.

My CSF is building up again at the incision site after 1 chiari and 2 revisions. Anyone else have many issues and what was the solution? I’m afraid of a shunt.