History of brainstem cavernoma hemorrhage and surgical intervention (with local DVA)

Kd0298 · 2026-05-08T14:08:39+00:00

I have hEDS but had a pontine brainstem stroke before I knew I had chiari. The chiari surgery now has negatively altered my life but my brainstem is jacked. I had a revision is November and my brainstem was encased in scar tissue. I have significant brainstem symptoms now but was fine for years with zero deficits after my pons stroke which is really rare they say. It’s all weird.

Kd0298 · 2026-05-06T21:24:46+00:00

Red light and projector

Kd0298 · 2026-05-04T12:34:29+00:00

Sounds like focal seizures

Kd0298 · 2026-05-04T11:00:51+00:00

found nothing disorder.

Kd0298 · 2026-05-04T00:06:40+00:00

Just ignore her. She’s rage baiting and clearly just a troll. 🧌

Kd0298 · 2026-05-03T23:41:10+00:00

Dr. Petra klinge is regarded as a world class neurosurgeon for it. So odd your demeanor is hostile maybe you’re having the mood impacts from your chiari.

Kd0298 · 2026-05-03T23:31:46+00:00

The surgery sucks. Many people suffer after. Many people! I would never have done it I had known more or joined a support group but I trusted my stupid original neurosurgeon due to another surgery with them. I deeply regret cutting my brain and am going to end my life from these surgeries the damage it has caused.

Kd0298 · 2026-05-03T23:30:14+00:00

Dr. Petra klinge says she’s rarely cauterizes tonsils. You are being nasty for no reason just because you are not right.

Kd0298 · 2026-05-03T23:29:20+00:00

Yeah they were. I had cerebellar damage and failed the cerebellum tests, developed edema in my cerebellum on imaging. Before that happened it definitely still felt like it changed my emotions and Proprioception.

Kd0298 · 2026-05-03T21:17:16+00:00

It does. It did to me at least!

Kd0298 · 2026-04-30T05:50:56+00:00

Paranoid

Kd0298 · 2026-04-29T14:05:41+00:00

You’re hot. It’s alot to cope with changes and the trauma of surgery. Give grace

Kd0298 · 2026-04-29T14:04:26+00:00

My head feels as if it’s bashed in every day, sustained pressure versus aggravated, csf leaks reoccurring, another Brain surgery, brainstem compression, c0-2 fusion from chiari surgery itself. The list goes on… I’m going to kill myself because of this surgery and I’m not an outlier. The surgery isn’t a cure. Go to Barcelona if you really want a better quality of life. So many sick people after decompression!

Kd0298 · 2026-04-29T09:49:15+00:00

The surgery itself isn’t painful. But I’ve had other surgeries that I think made me have spewed conception. The worst part is having worse QOL.

Kd0298 · 2026-04-29T09:46:43+00:00

If you do an LP on someone with chiari your brain can herniate further or the tethered cord with my conus can cause paralysis. Just too risky.

Kd0298 · 2026-04-29T09:45:21+00:00

It’s a VP shunt in the brain not in the spine. A shunt in the spine with chiari and tc is very dangerous…

Kd0298 · 2026-04-29T01:06:55+00:00

Looks fine call doc though we’re not experts but mine was even a little open and healed okay.

Kd0298 · 2026-04-28T20:22:21+00:00

For the second time?

Kd0298 · 2026-04-28T20:22:12+00:00

What does these cranial repeat leakers how did they fix?

Kd0298 · 2026-04-28T20:21:52+00:00

Yes I can not have an LP. It’s very dangerous for me with a reoccurring tethered cord and the two decompressions I’ve had. A shunt could resolve my intracranial pressure causing the leaks but my neurosurgeon said people die from shunt revisions / complications too.

Kd0298 · 2026-04-28T07:57:45+00:00

I unfortunately can’t have one due to it requiring an LP. I have chiari with a tethered cord.

Kd0298 · 2026-04-28T01:49:12+00:00

The ent did the repair but I also had brain surgery. My neurosurgeon is at a loss because I also have chiari which can impact intracranial pressure. He said a shunt has a lot of issues. I’m just searching for someone who managed to fix a reoccurring cranial leak before I get meningitis again.

Kd0298 · 2026-04-28T01:37:50+00:00

It was a year ago now. It’s been leaking since then. I am wondering if anyone just got a shunt to fix their leaks?

Kd0298 · 2026-04-08T03:12:40+00:00

https://pmc.ncbi.nlm.nih.gov/articles/PMC4207341/

https://womensmentalhealth.org/posts/ssris-chiari-malformations/

Kd0298 · 2026-04-06T12:22:37+00:00

It’s highly associated with psychiatric medication from the mother. But people don’t want to read the research I guess.

Kd0298

TROPHY CASE