Chiari surgery and worse after

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Chiari surgery and worse after is treatment for us. My page is awareness to help prevent failures.

In the early 2000s a pediatric neurosurgeon in the US proposed that removing part of the cerebellar tonsils may be a sup...
28/05/2026

In the early 2000s a pediatric neurosurgeon in the US proposed that removing part of the cerebellar tonsils may be a superior technique for treating Chiari. At the time, this generated a lot of controversy and pushback in the neurosurgical community from people who felt that preserving brain tissue was paramount. Since that time, manipulating the cerebellar tonsils has become widely accepted as an available surgical option.

As it’s been sad for years and these groups that we are all in cauterizing or removing part of the brain tissue, where there is crowding most of the time is successful.
 I know one thing… PUTTING something there (plate) was not successful for me and many others.

🔬 New Chiari research update! A large study comparing surgical techniques found important differences in syrinx reduction and revision surgery rates.

Read the latest summary from Conquer Chiari and stay informed.

PDF version:https://www.conquerchiari.org/library/index/click/887

16/05/2026

 Thankfully because of AI 🤖 and the technology we have now, we are able to get so much more understanding of medical language and what may be going on with us medically.

2016 when I had my first Chiari decompression surgery I literally had no idea what was done and I don’t remember speaking to my surgeon at all after my surgery although I know it did happen I was very out of it.

 I did not see that surgeon again for 4 MONTHs -FOUR months!!!
 I was having complications. I was in pain. I was scared of what was going on end of losing my job with medical benefit benefits…

 Had I had the tools now that I have like AI I would’ve known that after having a surgery like this, there is no way that you shouldn’t have a follow up appointment with THE SURGEON  if you are calling and emailing them letting them know you’re having issues.
I would’ve had more insight to understand that I really needed a better follow up care (at the time)

 Thankfully I did have a local neurologist that was helping with the symptoms.

 For me to talk about this almost 10 years later obviously you can see that it has given me a lot of PTSD that I’m still working on however, I won’t stop talking about how this should not have happened and it SHOULD never happen to anyone else.

 This is not a simple surgery and if you are coming to my page contemplating getting this just know that it’s basically like a “Blind Bag” in there for many of us so having a very planned out postop plan is just as necessary in my opinion as the surgery itself!

 if you don’t know my situation and story, it took me six years to get a revision surgery because this first surgery did not work, in fact it made me much worse most days barely hanging on  and basically got to the point where I became a whole different person.

 I am posting one out of four pages of my 2016 surgery (below)  that I just simply asked AI and easy question of what exactly did they find in my surgery?
 And basically what that means is this 37 years of damage from compression and blocked CSF flow  but here’s the thing the surgery they decided to put a there 🤦‍♀️ so that is a huge reason I needed a .






We are known as “bobble heads”
06/05/2026

We are known as “bobble heads”

I am reposting this off of A “reputable” hospital that has done thousands of Chiari Decompression surgeries in case stu...
19/04/2026

I am reposting this off of A “reputable” hospital that has done thousands of Chiari Decompression surgeries in case studies.
 I’m very glad that there is so much more awareness about this, but it’s also a double edged sword for me.😔

 I am sharing this because this page gets a pretty good amount of traction and I hope that there are people that do come here to get some personal testimonial  experiences from those who are living this life.

 …as I shared on this page and on social media and two friends and family…
 I knew only about a 10th of what I know now before my first decompression in 2016 so when  after surgery, my personality and cognitive got worse I did not know how to handle it or what to do to get help.
 I also had doctors and loved ones telling me that it “couldn’t be from the surgery”
Honestly, I felt very alone. I felt like my loved ones did not understand at all, and because the doctors were not telling them what they know now, but what I felt to be true..  I was extremely depressed and even s****dal.
 Because from the research THEY  did and their knowledge and expertise. It should not be affecting me after surgery. (we all know my surgery was not done properly, but that’s another story.)

💪Please educate yourself and your family about this and other things that have come out about CM so that you have a great support system as it is crucial.
 What helped me get through my second surgery in 2023 with all my complications and everything was that I had a mental health team right at my fingertips at any time that my Neurosurgeon set up for me as

💭🙇🏼‍♀️🤨

So many of us have the fourth ventricle blocked. Either partially or even fully because of the tethering of the cerebel...
13/04/2026

So many of us have the fourth ventricle blocked.
 Either partially or even fully because of the tethering of the cerebellum to the brain crowding.

 if not the fourth ventricle, we have other parts shown here blocked so you can imagine how detrimental this is to the functioning of the CSF!!

The highlighted structures on this MRI play a vital role in keeping the brain healthy, acting as both a transport highway for fluid and a control center for your body's chemistry.
Pathway of Cerebrospinal Fluid (CSF) Flow
Cerebrospinal fluid acts as a shock absorber, provides buoyancy for the brain, and clears out metabolic waste. It flows in a specific, unidirectional path through the ventricles shown:
- Lateral Ventricles to Third Ventricle: CSF is primarily produced by a specialized tissue called the choroid plexus. It begins in the lateral ventricles (not highlighted, but located above the purple area) and enters the Third Ventricle (Purple) through the foramen of Monro.
- Third to Fourth Ventricle: From the third ventricle, the fluid travels through the narrow Cerebral Aqueduct (Green).
- Exit to Subarachnoid Space: It then enters the Fourth Ventricle (Red) before exiting through small openings (foramina of Luschka and Magendie) to circulate around the outside of the brain and spinal cord.
- Reabsorption: Finally, the fluid is reabsorbed into the bloodstream through structures called arachnoid granulations.

Functions of Pituitary Gland Hormones
The Pituitary Gland (Yellow) is the "master gland" because it releases hormones that signal other glands to work. It is divided into two main lobes:
- The ventricular system and the pituitary gland work together to maintain brain health and regulate systemic hormones. Here is a breakdown of their functions and how cerebrospinal fluid (CSF) moves through the structures shown.
*Functions of Brain Structures:
- Third Ventricle: Located between the left and right thalami, its primary role is to produce, secrete, and transport CSF. It also helps protect the brain from injury by providing a fluid cushion.
- Cerebral Aqueduct: This narrow channel acts as a critical conduit that allows CSF to flow from the third ventricle down into the fourth ventricle. Because it is so narrow, it is a common site for obstructions that can lead to hydrocephalus.
- Fourth Ventricle: Situated between the brainstem and the cerebellum, it serves as the final internal chamber for CSF before the fluid exits to bathe the exterior of the brain and spinal cord.
- Pituitary Gland: Often called the "master gland," it is part of the endocrine system rather than the ventricular system. It secretes essential hormones that regulate growth, blood pressure, and metabolism.

Pathway of CSF Flow: CSF is produced at a rate of approximately 500 ml per day by specialized tissue called the choroid plexus, which lines the ventricles. It flows in a specific "downstream" sequence:
- Lateral Ventricles: The flow begins in the two large lateral ventricles (not highlighted in your image).
- Third Ventricle: CSF moves into the third ventricle through the interventricular foramen (of Monro).
- Cerebral Aqueduct: From the third ventricle, it passes through this narrow tube into the fourth ventricle.
- Fourth Ventricle & Subarachnoid Space: Fluid exits the fourth ventricle through small openings (foramina of Luschka and Magendie) to enter the subarachnoid space.
- Reabsorption: Finally, the CSF is reabsorbed into the bloodstream through specialized structures called arachnoid granulations.

This continuous circulation ensures that the brain is always cushioned, supplied with nutrients like glucose and proteins, and cleared of metabolic waste

Very good information showing the surgery.
04/03/2026

Very good information showing the surgery.

Some Chiari decompression surgeries consist of a craniectomy and duraplasty procedure. The procedure involves the removal of the arch of the C1 and partial C2 vertebrae. A patch graft may be used for the duraplasty.
Key anatomical structures shown include the cerebellum, brain stem, skull, dura mater, and C1, C2, and C3 vertebrae
Not all surgical treatments for Chiari are alike, each patient should be properly screened prior to surgery and a unique procedure should be done. This is only for Chiari. If a connective tissue disorder is possible in the patient, then they should be very cautious with the amount of bone that is removed in a decompression surgery so as to not cause cerebellar slumping, and the dura often should not be opened as this causes CSF leaks in those with connective tissue disorders. They should also do proper testing for craniocervical instability and consider a cervical spinal fusion if there is instability in the brain and spine junction, as well as thoroughly check for occult (hidden) tethered spinal cord.

23/02/2026
22/02/2026



 After two brain surgeries, I still suffer from symptoms due to CSF flow issues.
 This is of no fault of my second neurosurgeon.

I will never be symptom-free unless I take more chances of another surgery.

Please educate yourself before a surgeon does a

17/02/2026

My Two Cents…
I don’t think someone should be necessarily bragging about doing 1,000 without statistics of how many of them were successful how many of them were repeats etc. Being so quick to cut is not the best thing- especially !

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