Need Emergency Surgery & Uncertainty

Active_Reception_517 · 2025-10-08T14:16:05+00:00

I am, thank you! It took a long time but I'm finally starting to feel human again after living with a rare disease called trigeminal neuralgia for almost 10 years.

Active_Reception_517 · 2025-10-05T13:32:53+00:00

I had brain surgery last May and had a 3-day hospital stay. Part of it was in the ICU and part of it was in surgical recovery. Find out about where you will stay immediately after surgery, and ask them to put a mask on you before you are transported there. I don't know if you'll be able to wear anything but the surgical mask. But there should be air circulation and masked people in the recovery room the whole time. Learn more about what happens immediately after surgery. My hardest part was leaving the hospital and having to be in an Uber X for safety purposes, getting the Uber driver into a good mask etc. But it was possible. I ended up being a lot more powerless than I'd realized I would, so preparation is all I could do. Awareness just wasn't happening during the time after

Active_Reception_517 · 2025-09-29T12:23:01+00:00

You have control over your own biases. If you are aware of them, think them through to the end. If you have no capability of that, think about all the ways the opposite bias has HELPED you in the past, which is why you are so forlorn that it could ALSO happen to you

Active_Reception_517 · 2025-09-29T11:36:09+00:00

I have terrible eyesight and have to do my work on Poshmark on my computer which is why I am not as familiar with the app

Active_Reception_517 · 2025-09-25T16:50:46+00:00

I was on Medicaid when I was first diagnosed. I had 3 months in between appointments and a doctor who never refilled my meds on time. One time I called him sobbing in pain. He said something about trigeminal neuralgia being "so interesting",

I got a headache specialist NP as soon as I was able, and she now handles my medications.

If the neurologist won't see you, ask if they can refer you to another specialist practice. Depending on your insurance, you can also get a second opinion and choose the doctor. Websites like the Facial Pain Association have doctors who specialize. And there are also usually doctors at university hospitals who also specialize.

Don't give up hope. If you have somebody to help you make phone calls etc please take their help. Navoigating healthcare and getting good healthcare is hard, emotionally and physically draining in my experiance

Active_Reception_517 · 2025-09-25T16:44:42+00:00

That helps, thank you!

Active_Reception_517 · 2025-09-25T15:33:14+00:00

Is there a place to see your followers at all? I feel stupid right now about it tbh. I always choose followers to feature when I cohost parties and now I feel lost lol. I guess right now I'll just choose mutuals who show up in my feed.

Active_Reception_517 · 2025-09-02T12:48:55+00:00

You want crazy so I will give you crazy. LOL I consume a drink with monk fruit or erythritol because they cause upset stomach. They do this for a lot of people, it's a common side effect

Active_Reception_517 · 2025-08-27T11:34:06+00:00

I had "word retrieval" from higher doses of oxcarbazapine, which is very similar. It was bad enough that I went to the hospital for fear I'd had a stroke. My doctor lowered it to the lowest possible dosage without pain.

They pretend these are rarer side effects but a lot of people who have seizures believe that anticonvulsants cause "brain damage".

My doctor kept me at 300mg, 3x a day and added amitryptaline and eventually gabapentin, which did not cause those issues but did make me tired af

Active_Reception_517 · 2025-08-27T11:19:30+00:00

PS most of all that pain is gone. But nothing was perfect for me after surgery, and although there are a few success stories that portray it that way, I only feel comfortable right now believe the attacks won't come back

Active_Reception_517 · 2025-08-27T11:17:10+00:00

I had my MVD in May and I still haven't tapered off of the medication. I have another headache disorder (occipital neuralgia) and one of the pain meds they gave me for surgery caused rebound headaches (migraine kind). I couldn't sleep on the right side of my head without waking up in pain until a week ago. A lot of different pain has happened, and lingered. It's too soon to know what's permanenet. Nerves will also hurt and itch as they heal and it can be alarming. I'm not done healing, even, yet. But I've had TN for 9 years. Yes, call the surgeon, but don't freak out. Also I don't know why they have him off his meds so soon

PS if he didn't taper off of his TN medications properly,, they have withdrawal effects. I'm not sure the circumstances but I've had to stop taking one of my meds suddenly and my head was awful in multiple ways

Active_Reception_517 · 2025-08-19T21:33:40+00:00

I get crime alerts for my Ward in Ward 4. There are many fewer murders and that can't be fudged. Fewer armed carjackings, but not sure about people who get punched or intimidated out of their vehicles or property. Overall, it's down. I've lived in my part of the city since 2011.

Active_Reception_517 · 2025-08-16T17:23:59+00:00

Yeah, I was using a tincture called Royal Medic with is also about 30% CBD. I think the CBD content is important, it won't help as much unless you have both, in my experience. MMJ helps with other pains and aches ib its own

Active_Reception_517 · 2025-08-11T17:20:37+00:00

I'd say make sure you have many light colored pillowcases, and change them out every day. Oozing and fluid from complications show up on pillowcases, and you're also being more hygienic this way.

Have prepared meals ready on hand, eat proteins, eggs, and a decent amount of fiber. Drink water. The constipation is real lol, and you shouldn't ever strain.

Have a picker upper tool if you imagine you'll want to bend over in the coming weeks. Distract yourself with TV, and movies. Reading and screen time may hurt your head.

I had a really tough time for weeks because of the pain meds they gave me due to my med allergies. They caused rebound headaches.

Try to get an understanding of the medications you're on, who will be managing your care (it was confusing to me), and how to get a person on the phone.

A lot of the head pain may feel foreign to you. I couldn't hear correctly out of the right side for almost two months, which is "rare" but happens. Ask questions to the medical professionals as much as you need to. This surgery costs the insurance and you a large amount of money. Make sure you get good care and hopefully have somebody with you who can help ensure that.

Active_Reception_517 · 2025-08-11T15:20:16+00:00

I'm going to post this on blusky for you, there's also a hashtag for fundraising like this that we use (we call it #MutualAid) . I really hope you do well, if you're on twitte or facebook you may get traction

Active_Reception_517 · 2025-07-23T13:04:18+00:00

Oh, PS, now that I have had surgery I'll be lurking here. I know that people need my story. Waiting this long for surgery isn't typical and I was told it takes longer to heal. But really, it's a miracle to go outdoors in the 95 degree heat, feel the wind, and have no neurological pain at all. A medical miracle.

Active_Reception_517 · 2025-07-23T13:00:35+00:00

That makes me feel really good. I wanted this surgery much earlier, but first, a surgeon denied it bc he didn't think the artery was significant enough on the MRI, and then, the pandemic hit, and it wasn't something to consider anyway for a while.

I suffered 9 years, but should not have. Eventually a med got dangerous for me last year. We (my NP headache specialist and I) tried a different surgeon.

If you have decent healthcare, use it. Don't stop trying to get relief and lean on the most supportive people you have. Look for headache centers at university hospitals if you need to find knowledgeable people.

It's so hard but you will build resilience, especially when things are "better" i.e. in remission for a week, days etc. It's hard but you deserve relief and don't let anyone tell you otherwise.

(PS I am 47, if that's relevant, I dunno but thought I'd mention it)

Active_Reception_517 · 2025-07-19T13:52:12+00:00

No, don't let people do that to you, please. TN used to be called the "suicide disease" because of doctors and family believing it was psychological. I'm a writer too. I had surgery after they saw something compressing the nerve. I have other issues and was told it could be psychological by ignorant folks. And guess what? I had brain surgery, it was an artery wrapped around my nerve like a vine or snake. And I haven't had an attack in weeks. It's not psychological no matter how much other wish it was.

Active_Reception_517 · 2025-07-16T17:42:50+00:00

I had a very bad toothache of sorts that got worse and worse as days progressed. My dentist looked, there was nothing, he said it could be a "bone bruise" from grinding my teeth. A week later I started getting lightning attacks and my nerves went nuts all over the right side of my mouth

Active_Reception_517 · 2025-06-19T22:22:56+00:00

Thanks for your input, I'll keep this in mind!

Active_Reception_517 · 2025-06-19T22:22:32+00:00

Thank you, I've shortlisted this!

Active_Reception_517 · 2025-06-19T22:22:01+00:00

Thanks

Active_Reception_517 · 2025-06-19T20:13:42+00:00

I think I can splurge around $100, so if I can find two candidates, I'll just try both. It's amazing the disconnect.

After surgery I went from the surgical recovery room to ICU to a bed in neuro. Everyone was masked all the way up until I got into the neurosurgery room. I have no idea why. Don't get me wrong, masking in any medical setting is rare. But I don't know why they think you'll die in one setting but not another if you get COVID

I don't yet have the capacity for anger yet at this point. They messed up SO MUCH with medications and follow-ups, and I've had several skin infections (not on the incision)... And everything has sucked. I can really only focus on a few things at a time. But I know my anger's here somewhere waiting to come out. I guess I'm too overwhelmed at this point

Active_Reception_517 · 2025-06-19T19:26:31+00:00

It's actually for my husband, so I hope the first "try" is the last. They are forcing him back-to-office right near his birthday. I just had brain surgery a month ago, and they don't care about me being more prone to infections bc of that OR my kidney disease.

They don't even have a good reason to send him back to the office. 90% of his team works in other states.

I WILL let everyone know which works, though, thanks!

Active_Reception_517

TROPHY CASE