#chiari malformation surgery

[myownjadedpieceofmind]

I could use some help during the time I'm going through recovery from brain surgery. I know it's hard to just "donate" money to someone, but...perhaps if you bought a piece of jewelry, you'd be receiving something at the same time as you would be helping me pay my bills.

I have all of these, and more, on my website. I also have a whole bunch of stones, including uranium glass, that i would be happy to wrap up for you.

A gofundme has been set up, along with an Amazon wishlist including some of my favorite comfort foods.

I'm scared, but hopeful, that this surgery will make my life a little more livable. I need to make some accessibility modifications to the bathroom, but my goal is to make sure my bills are paid for the time I'm recovering from this surgery. It's going to be a while before I can get my hips replaced, but at least the pressure in my head will get better.

[myaudiocommentary]

[jmflowers]

THIS PATIENT ON GREY’S ANATOMY HAS THE CONDITION THAT I HAVE!!!!

[silverior968]

Happy 1 year (and 4 days) to me surviving my brain surgery (and becoming a cowboy in the most literal sense of the word, they patched my skull up with cow's cardiovascular tissue)

[Image ID: A digital drawing of a white teenager with short, choppy brown hair and blue-grey eyes. They have a lot of moles/ freckles and are wearing glasses, a black sports bra and blue jeans. They are facing away from the camera in front of a mirror that shows their face, smiling. They have one hand up in a peace sign, flexing the bicep and the other holding their hair up to show a large surgery scar. The background is fuchsia and the drawing has glowing scribbles on it in the form of stars and sparks, especially around the corners and the scar. The text "1 year since the chop!" is written on the image. The artist's watermark, which reads Silverior968, is overlayed over the image. / End ID]

[ihaveneverbeenasleep]

Can’t believe I lasted four years on this shunt. That’s my personal record. I have an MRI soon and several other tests before I find out the next steps but atleast now I have concrete proof that it’s broken, and an answer to my pain. My codman certas valve is supposed to remain at either a 1 or 2 setting. It was somehow on a 7-8 when it was checked today.

[lithiumrev]

the place im supposed to have my shunt implanted got back with us…. i have an appointment next wednesday. packing extra stuff in the case they decide to admit me and go ahead and do the surgery. id be lying if i said i wasnt nervous… sure, itll be nice to have some relief but… idk. its terrifying. on one hand ill feel better, but on the other? idk. ive lived my life like this for so long. its going to be weird.

[phosphorus-noodles]

the downside about being so well informed about so many medical issues is that it makes it 10x easier for me to self diagnose myself and overanalyze everything forever

[theparadoxmachine]

3rd anniversary of my brain surgery!

Per the suggestion of @aestheticsbecomeethics I got two celebratory cakes. One is vanilla with buttercream and the other a black forest cake. I also got myself a turkey burger and sweet potato fries for lunch.

It's been raining and foggy today so my knees have been hurting. Normally I'd feel like this would ruin what should be a nice day but I choose to see it as a reminder that recovery isn't a straight line and having a not so great pain day doesn't mean I'm going backwards or that I'm doing something wrong. These things happen and and it's not a reflection of my worth or the effort I've put into getting better. All it means is the barometric pressure is making my joints a little cranky and that's okay.

One thing I find myself ruminating on today though is that 3 years down the line there are things I'm still angry about. Lockdown happened in my area while I was in the hospital. The world flipped upside down while I was under anaesthesia. It was surreal to wake up to a world I barely recognized. It was isolating too to watch the world go through an experience I had so little to do with. After all, I wasn't under quarantine. I was recuperating from major surgery. And 3 years later, I am no closer to forgiving those who refused to take precautions to keep people safe. People like me. My surgeon told me point blank if I got covid I wouldn't survive it. But wearing masks and staying home was too much for people. A woman at my physical therapy center wore a mask that said "THIS IS USELESS" on it. The mask she was required to wear to keep people like me safe was useless to her. At my most vulnerable point, I had people tell me, in her case literally to my face, that my life was worthless. They weighed my life in the balance against their desire to hang out in person and get their hair professionally styled and eat at restaurants and made a choice.

I have not forgiven them. And I probably never will. I read something on here that resonated with me about my past. "Your anger is the part of you that knows what happened to you was wrong." I'm angry because for the first time in my life, I can recognize the value of my life. I can enjoy it. I can feel happy to be here. And I will not let anyone take that from me. So I will let myself stay angry. I have a right to be angry that my life and the lives of others was treated so cavalierly. Forgiving anti-maskers will not make me feel better and they don't deserve it. Three years post-OP, I'm no closer to reaching across the table for any kind of unity. Their hands are too filthy.

Overall, I'm not doing to bad. Love you all and I'm glad I can say I'm happy to still be here.

[hotchocolateandpillowforts]

I had a virtual doctor’s appointment today which gives me just as much anxiety as an in person visit. Maybe more?? But because schedules were what they were for this week I could only do a virtual one. We discussed meds and renewed prescriptions. She wants me to get back on the tracking my migraine train (I stopped last year because I became my mom’s full time care giver for a while and then had like 6 months of burn out that made everything so fucking hard). And I get to do blood work and an MRI on Tuesday. I haven’t had an MRI since my original in September 2021 and the CINE one in October 2021. Doc also said that surgery is unlikely even if we see a worsening of my Chiari on the MRI since my symptoms are mild at this point. No one wants to cut into your head and remove pieces of bone unless it’s 100% unavoidable.

[leesha245]

Oof! Felt this.

The most terrifying part of having memory issues is when you can feel something from 5 seconds ago be thrown out the window and there's an empty hole where it once was. You remember that you forgot something.

[myownjadedpieceofmind]

Brain surgery.

Yup. 30 days from today.

[missmamibee]

Hey guys. Little update on me. I never got to go to my sleep study because I was taken to the emergency room. After hours and hours of fiascos I was diagnosed with Cerebellar tonsillar ectopia and Arnold-Chiari malformation. I was warned that I might need brain surgery. 🤕

[wilsons-hotlittleprettyboymouth]

I have a nerve test tomorrow and a results sesh on Friday, I did find out already that my MRI last week showed a severe chiari malformation which was really unexpected, it’ll cost a ton of money (I assume) to get the surgery to give me a normal-ish life but I’m also being urged to sue my last neurologist who did multiple MRIs on me over the years since I was a teenager and claimed they were totally normal every time. I only gave up on his office and got a new neuro this year when I found out he was prescribing me both an autoinjector and a syringe of the same migraine meds and charging me to submit a new prior authorization and every few months on whichever ran out. So big things happening for me rn

[silverior968]

Hey so I'm still kicking!!

The surgery went really well, like I'm talking perfectly as planned. This is definitely because of the fact that my neurosurgeon is one of, if not the most skilled chiari decompression surgeon in my country. I am very thankful to have received treatment from her.

The surgery took 5 hours from start to finish, and the first 24 hours after I spent In the ICU under constant supervision and getting all my nutrients from a drip. The next day I got moved to a regular neurosurgical hospital ward. That day I felt especially ill, but I'll spare you the details. I started to regret agreeing to the surgery at all.

But then I woke up the next morning, and I felt so much better. I got to walk for the first time after the surgery and even managed to eat a bit! Honestly thank goodness for the existence of kisel and pudding, they were my comfort. And today is the day after that. I'm still at the hospital, and I still feel very shaky, but I'm glad to be In such good shape. My neck and chin are super swollen though, but I was expecting so much worse. We'll have to wait and see how much this impacts my chiari symptoms. And if nothing else my wound has started healing nice and clean, so pretty soon I'll have 10cm scar running from the back of my head to halfway down the back of my neck. I see it as a tribute to another battle I've endured and won.

I've still got a long recover ahead of me, both physically and mentally, but I'm already doing so much better than I could ever have dreamed of.

[aitadjcrazytimes]

Hi, I saw your tags:

I was wondering. Um. Would you be comfortable sharing what other symptoms you have?

I've had memory problems for years but every time I look them up I just get stuff like alzheimers and car crashes and stuff, which doesnt apply. Idk

I was wondering if this might be me also. I'll talk to a doctor, of course, but. Just wondering what the general vibe is

Sure! Though, be aware, if you Can get evaluated for your symptoms you probably should, at least to make sure it isn't degenerative.

Via-a-vis the ABI (That's Acquired Brain Injury), part of the reason it took so long to diagnose is because

I already have a different diagnosis of cEDS (Classical Ehlers Danlos Syndrome) that explained several of my other symptoms

I have GAD and PTSD due to living in a very abusive and dangerous environment up until about 5 months ago, and

At least two of my family members are autistic, so it was just kind of vaguely assumed that any weirdness regarding my sensory processing and so on was because of that.

So! To summarize (and I put this below a cut because it gets Long).

Chiari Malformation is when you have a defect in the base of your skull that puts pressure on your cerebellum, causing part of it to go into your spinal column. Many people with this condition don't experience any symptoms, but that is not always the case, and even with no symptoms, it does place you at a much higher risk for a brain injury. With a Chiari Malformation, even a mild concussion can cause serious damage.

I have had several concussions, with one of them knocking me out for several minutes when I was very young. So. Here we are.

Regarding treatments for Chiari, most of what can be done is simply treating the symptoms. Unless there is concern about the condition getting worse (more memory loss, paralysis, etc.), patients will likely be referred elsewhere to discuss pain management, because from my understanding, the only effective treatment for Chiari is a decompression surgery, which will remove part of your skull to take pressure off the brain. It's not terribly risky as brain surgeries go, but the best brain surgery is, of course, no brain surgery.

Re my Physical symptoms:

I get headaches very frequently, and often very severely. They have been categorized as migraines in the past, because they come with severe light and sound sensitivity, and they tend to knock me out for hours. That said, they don't meet all the criteria for a migraine, including having no aura to speak of. They are often triggered by strain and jostling my head--by coughing, sneezing, vomiting, jumping, or anything that would cause motion sickness.

I have poor balance. I have found that walking with a cane helps, but physical therapy doesn't do all that much (because it's in my brain and not my muscles).

I also struggle with chronic fatigue. Getting out of bed is a real struggle most days, as is getting anything done outside of simply going to work and then coming home--although I recently went on an antidepressant, which has helped a bit.

Insomnia! I have trouble sleeping. It comes and goes, sometimes I get several days worth of restful sleep, but sometimes I get only a few hours worth of sleep over the course of a week.

Shooting and burning pain in back of skull, neck, spine, shoulders, and chest. Be careful with this one, because this can also be a result of a heart issue. That said, I've had my heart checked out, and that's all good, which is why they checked the brain in the first place.

As for my cognitive symptoms, it's a bit fuzzier, because like I said before, I have PTSD, I have the ABI, I have GAD, several of my family members are somewhere on the autism spectrum, and now my therapist is also having me evaluated for OSDD. So, your mileage may vary. But essentially:

Memory loss. Some of it is retrograde, and I have found that I'll forget significant events and people. Most of it is anterograde, or short term--so, forgetting what a conversation is about while I'm in the middle of a sentence, and either having to improvise and try to make a guess as to what I was talking about, or having to have my conversation partner walk back what we were talking about to explain what we were doing. I have to have a very detailed and elaborate task tracker at work in order to stay on top of things, or I would simply forget it all. I also have the experience of feeling like all of my memories are stories that were told to me. So, I rarely experience a memory as a thing that happened to me, complete with sights and sounds and feelings and sensations and so on, but more like a story that someone told to me once. So, a vague recollection of events and the order in which they happened. This makes it difficult to differentiate between my own memories and stories that other people have told me. It has happened a few times that I have told a story of something that happened to me, only to find out that it actually happened to the person I was talking to instead, and I just got confused.

I'm not sure what to call this one, but I get EXTREMELY easily distracted from processing audio, especially in an environment with more than one thing happening. If I am having a verbal conversation with someone in a restaurant, and someone comes and sits at the table next to us and starts talking, I become almost incapable of conversation. If I'm talking to someone and someone turns on the TV in the next room, I become almost incapable of conversation. If music is playing, I lose track of the conversation. I forget everything I was saying. I won't be able to understand what other people are saying. Spending time in loud, busy, or crowded environments is not that distressing by itself, but I will not be able to hold a conversation.

Aphasia and Verbal Processing. It is incredibly difficult for me to put words together in a way that is coherent. It is significantly easier through writing, because I can look things up and take my time with it. But in vocal conversation, I will frequently have verbal shutdowns where I cannot find a word, and all of my language processing shuts down while I try to comprehend what I was talking about. This often leads to...

Fuzziness/Blurriness. I typically call this "going fuzzy". Generally it involves a verbal shutdown to an extent, where my brain has reached capacity with processing information, and is deciding to simply wipe everything and start over. Think of it like restarting a really old computer. Sometimes it doesn't take too terribly long--a few moments. Sometimes it takes more than half an hour. It depends. This is often accompanied by...

The Buzzing™--It happens for me at the base of the skull, where the injury is. It feels like a tuning fork fused to the inside of my skull. It is completely maddening. My ears ring, and it sounds like a high pitched whining noise. I become very on edge, it's incredibly anxiety inducing, and very overwhelming. I don't know if this is a common symptom you will be able to find under brain injuries, but it's Extremely not fun! I have found that it can be lessened somewhat with massaging the area.

The Voices™: I have heard voices ever since I was a kid. (Schizophrenia has already been ruled out.) Sometimes, it Is an actual auditory hallucination. I recently had an experience where I was grocery shopping and kept flinching because it sounded like someone was shouting my name directly into my ear. Other times, I've heard people whispering or knocking on my walls. These typically occur during or following a stressful situation. HOWEVER, I also experience The Voices™ in my daily life outside of stressful situations. In these situations, it is never auditory, more just a thing that occurs in my own head. I have, in the past, had the experience of talking more or less constantly to one or several distinct people in my head. Nowadays, it feels more like experiencing multiple trains of thought or multiple sets of emotions which feel distinct from "mine". Or feeling like a background voice in my head while someone else does things for me.

Per my therapist, I have recently begun categorizing them as different people to see if that helps. And it does sometimes! And sometimes it does not. It is a process. But that's where I am with that.

There's more to it, but I don't really have the capacity to talk about it much more than I have at the moment.

If you want to see what my experience with this is like... I mean. I did write an entire fanfiction about a character with several of my symptoms recently. You likely won't have the context for what is going on re the character and the situation unless you are into Red vs. Blue, but just in case it helps to see a recounting of it, here:

The Fanfiction That Helped Me Realize I Had Brain Damage™. Have fun!

[seducemefanficsandheadcanons]

So I have some questions for yall about my big Aron fic.

TW for mentions of health topics like seizures, paralysis, numbness, other neuro/physical issues, surgery, etc

I've probably said this a million times, but Aron is my self insert with certain aspects changed, so she fits in the plot and is less irritating to write. This means she has a lot of the health issues I have.

There is a poll and yap sesh below the cut (Putting a cut for people who don't wanna hear [read?] me yap about my health and Aron lmao)

I have a fuck ton of neurological symptoms caused by obstructed cerebral spinal fluid flow from Chiari Malformation type 1. Chiari is a neurological condition that causes the brain tissue to grow downwards into the spinal canal, usually caused by a defect in the shape of the back of the skull. The defect causes the cerebral tonsils to not only grow downwards but can (and did in my case) cause them to crowd closer my brain stem, which contributed to my symptoms as well.

The main symptom of chiari is severe headaches. Many people don't have any symptoms at all. But because of the specific way mine pressed my brain stem/the amount of fluid obstruction on top of the fact I've gotten whiplash multiple times due to tourettes, the combination was sent from hell and really fucked my brain up.

I had decompression surgery for it over a year ago. To explain the surgery in a simplest way I can, the neuro surgeon permenantly removed a piece of my skull and my top vertebrae to restore the flow of spinal fluid between my brain and spinal canal while also giving the cerebral tonsils more room, releaving some of the pressure from them and by brain stem.

Before I had the surgery, I had daily seizures, paralysis episodes, severe dystonic episodes, and more things like that. I still have a lot of issues because of it, but I haven't had a seizure in every year. I only have had 1 minor episode with dystonia and have been in a physical overall better place.

And because Aron is my self insert, I've debated heavily with myself whether or not I wanted her to have the condition. I only recently decided to give her chiari (I want her to have the surgery in the duration of the fic.) But I'm struggling on whether or not I should give her the severe symptoms I had.

On one end, I want her to because it could explain a misdiagnosis she has in the beginning of the fic and in some ways is important for developing her as a character (unlearning the idea that it's 'in her head')

On the other hand, I'm worried that people just don't want to read that. I can give her chiari with a more 'typical' presentation if that's the case.

Or I can just drop the chiari all together.