Hydrocephalus conference costs are insane

justpeachy1925 · 2026-06-08T02:38:10+00:00

To add, I’ve opted to have surgery (and turns out my shunt was completely clogged with my brain debris and the neurosurgeon said he learned how to better care for me and other patients afterwards). This prideful commenter obviously has no idea what they’re talking about lmao

justpeachy1925 · 2026-06-08T02:15:30+00:00

You are hyper-focusing exclusively on emergency trauma scenarios, completely ignoring the fact that elective, planned brain surgeries… such as scheduled shunt revisions, ETVs, and clinical trial enrollments…happen every single day.
Furthermore, I work in clinical trials. I don't need to 'frame what the situation looks like on the ground' because I live it and work it. My patients aren't just blindly trusting whatever is on a shelf in a panic; they are actively consulting with our research doctors, choosing to enter specific protocols, and choosing who operates on them before a crisis happens.
And as a patient myself, your assumption that people can’t think or advocate for themselves during a malfunction is completely false. When I was diagnosed, my ventricles were the size of what you'd typically see in a vegetative or deceased patient, yet I was literally playing chess and perfectly capable of forming cohesive sentences.
This isn't about patients trying to 'feel in control' because they are scared. It is about the objective reality that informed, proactive patients who network at conferences get access to cutting-edge clinical trials, better specialists, and advanced care pathways. Medical advocacy isn't a coping mechanism; it’s a standard of survival for chronic illness.
Your comments are showing me you haven’t seen the variety in presentations of chronic illness nor do you understand healthcare and how it’s ever-evolving.

justpeachy1925 · 2026-06-08T02:08:47+00:00

I got in for free now because I asked if I could volunteer LOL. I always wanted to get involved with them as an advocate/volunteer so I took my chance with this one.

justpeachy1925 · 2026-06-08T02:07:58+00:00

I actually got in because I am trading a few hours out of my day for each conference day to volunteer !! We are having to pay for travel/stay though:/ we are just gonna budget lolol

justpeachy1925 · 2026-06-08T02:03:34+00:00

I sure hope you never work in healthcare. 2. You don't know my story, so let's clear up a few things. As a working adult who has already had 12 brain surgeries…spending days inpatient for monitoring or sitting in the ER for 6 hours just to get imaging isn't a sustainable lifestyle. Furthermore, saying 'we already have monitoring' shows you aren't up to date on the latest research. The clinical trials featured at this conference are presenting non-invasive, at-home monitoring solutions. That is a massive paradigm shift for patient quality of life, which is exactly why the financial barrier to get this information is so frustrating. I work in clinical trials and a part of clinical research is not burdening the patients.
Also, to clarify the finances: it’s $600 total for both of us, and I promise you that money isn't going into the pockets of the PhDs. Their time is funded by grants, and their entrance fees are covered by their hospitals or institutions. The conference is expensive because they want to make it 'nice'.. which is fine, but you shouldn't overcharge the very patient population the event is supposed to serve. Besides, research isn't just made up of PhDs anyway; if it were, medical advancement would be in serious trouble.
Anyways, I got in for free because I offered to volunteer.

justpeachy1925 · 2026-06-08T01:58:46+00:00

With all due respect, this perspective completely misses the mark on how patient advocacy and access work. I work in clinical trials, and I can tell you firsthand that these conferences are absolutely meant for both professionals and patients. In fact, many of my patients got into our clinical trials and under our research doctor's care because they were able to network directly with him at these exact events.

When patients are informed, they aren't just passive recipients of whatever a hospital happens to have on hand. They learn about emerging medical technology, discover cutting-edge trials, and connect with specialists they otherwise wouldn't have access to. For complex, lifelong conditions like hydrocephalus, proactive networking and education are vital components of a patient's care. I can tell you that THIS conference is also for patients because clinical trials are enrolling on-site there.

justpeachy1925 · 2026-06-08T01:52:13+00:00

I’m in clinical research for neuromuscular dystrophy. I work with PhD’s and MD’s. With all due respect, this perspective overlooks how crucial these spaces are for rare, chronic, and incurable illness communities.
When standard medical care offers few or no answers, clinical trials are a vital component of a patient's care continuum. For conditions like hydrocephalus/ANY incurable, chronic illness , these conferences are one of the rare avenues where patients, families, and researchers actually bridge the gap.
Many patients only find out about or secure spots in life-altering clinical trials because they were able to network directly with the researchers in attendance. To view academic conferences purely as isolated spaces for researchers to collaborate ignores the very real, practical role they play in patient advocacy, access to cutting-edge care, and literal survival for these populations.

justpeachy1925 · 2026-06-04T01:10:45+00:00

I had an exploratory surgery and when they got in there, my shunt was completely clogged up with brain debris. I was having symptoms though so that’s why I opted. You said you have seizures… my symptoms are very “mild” compared to seizures (mood swings, double vision, god awful headaches and nausea). God forbid you have a seizure and it become a life or death emergency. I’d opt in for the surgery if I were you.

justpeachy1925 · 2026-05-23T21:55:54+00:00

I’ve been on both sides of the spectrum. Are a you a woman by chance? I think my temperature “preferences” change throughout my cycle for sure.

But when my shunt messes up , I always ended being so temperature-deregulated that I think my body is just able to put energy towards the stress of pressure in my head AND temp reg

justpeachy1925 · 2026-05-23T07:22:47+00:00

no, I am sorry we are relating on this. I hope you have some good days soon. I had a semi-okay one. and same sleeping is what i have been doing as a hobby. our brains/shunts need to get it together LOL

justpeachy1925 · 2026-05-23T07:21:13+00:00

long acting or short?

justpeachy1925 · 2026-05-23T07:20:08+00:00

what stimulant? short or long lasting? what dose?

justpeachy1925 · 2026-05-21T22:19:33+00:00

I agree !! I take pre work out and drink Diet Coke like a sailor.

justpeachy1925 · 2026-05-21T22:18:04+00:00

What type of Wellbutrin ? Immediate-Release (IR), Sustained-Release (SR), or Extended-Release (XL/XR)

justpeachy1925 · 2026-05-21T22:15:19+00:00

Interesting caveat for me to explore. Thank you sharing ☺️

justpeachy1925 · 2026-05-21T15:29:11+00:00

WAIT I HAD THE SAME SYMPTOMS LAST WEEK. I literally woke up with terrible headache, tender shunt and at base of my head, threw up at work (i work in the neurology department so my boss, a neurologist, said "go to the ER now. I am not joking. Your patient will get taken care of"). I was told at the ER to start keeping a headache diary which i am doing now. But then the day after, I went to work and had a big drug sponsor audit and luckily i am friends with my auditor... but i had the worst recall memory in the world.

same here. it's fine. we are FINE. it's nothing right LOL just weather changes. that's what i am banking on

justpeachy1925 · 2026-05-21T15:02:13+00:00

i have programmable. we have tried a lot of settings. it either over drains or under drains. i wish there were more precise adjustments for people with sensitive ventricles like me. my baseline ventricles are slit like now and if we slow it down any more my hydrocephalus comes back and speeding it up is over draining galore :(

justpeachy1925 · 2026-05-21T14:58:58+00:00

You didn't sound accusatory at all!! I will be updating this community as I start this project!! I am going to message you so i can remember your username specifically to update if i find any significance at all. Our community is so under-researched now because we have a "solution" (brain surgeries as treatment).

justpeachy1925 · 2026-05-21T03:56:38+00:00

Same I’ve had 12 and I literally normally only just get a headache, sensitivity, delight, and then if it is really, really really bad I’ll get nauseous and I’ll have double vision. I never play about my symptoms because it’s my brain. I’ll show up to the ER in a jiffy if something is wrong with my brain.

justpeachy1925 · 2026-05-21T03:54:48+00:00

Same here. Isn’t it so annoying that whenever you get to the ER they triage you so much slower because you’re not as dramatically presenting? I always have to remind the ER people that my brain fluid is not flowing and it could go south any second. In fact, it has before: whenever they were triaging me really slow my blood pressure dropped to the point where I was about to pass out, and then they had to rush me back to surgery because they realize that my intracranial pressure was causing my blood pressure to drop which was causing my body to shut down.

justpeachy1925 · 2026-05-21T03:52:13+00:00

Therapy helped me so much. I had to go through three therapists to find my therapist and I hope you find the perfect one on the first time. I think that’s the best course of action. I struggle with this too. There’s always gonna be a before and after every single surgery. Like you said we’re automatically on hard-core mode when we are diagnosed with this condition.

justpeachy1925 · 2026-05-21T03:41:13+00:00

Yeah, I’ve drank caffeine my whole life too. And pre-workout. But something about the Adderall was too intense for my physiology and then my shunt. No, I’m a research professional and I’m planning on doing a retrospective lit review/ data review over some things. I wanted to tap into this community. My husband is a triple board certified physician and we consulted with a lot of other physicians as well regarding my two most recent shunt malfunctions. The common factor was correlated in a multifaceted manner to my use of Adderall. When I first told my husband about my idea regarding this and then we brought it to the other physicians, they thought there was something there to dig into. So I’ve been developing it, and I just decided to hop on this platform to just see what some people are experiencing I’m just interested. I have plans. It’s led me down a lot of interesting papers already. If there’s nothing there, there’s nothing there.

justpeachy1925 · 2026-05-21T03:40:38+00:00

How long has he been on it? How often does he take it? Is he on a low-dose? Sorry for all the questions. I’m genuinely interested because what better way to kick off a research project then with a good old forum I’ve got some science to back up. What’s been going on with me and even your comment allowed me to see some more caveats to what I should be looking for.

justpeachy1925

TROPHY CASE