What's one thing you'd tell your younger self that you know now that you wish you knew before dealing with your conditions? What suggestion or choices would you have made differently if at all possible?
Where is everyone in the North Eastern US getting the best hydrocephalus care? I am willing to travel! My daughter struggles with slit ventricles and we are looking for the best doctor to help with our situation of daily headaches and csf pressures of 28-34 despite settings that only allow for about half that…
Hi all, I’m (24F) getting my VP shunt converted to a VPL shunt next month due to increasing ICP despite what looks like a functional shunt. I’m feeling nervous because I’ve had my VP shunt pretty much my whole life and I don’t know what to expect with the VPL. I’m also wondering about the actual experience—where the incisions will be, how long my hospital stay will be after the conversion, that kind of thing. I know that experiences can differ greatly, but has anyone else gone through something similar and would you mind walking me through your experience? Thanks (-:
When your dealing with conditions and certain abilities it can be exhausting. How do you go about your day to day to stay motivated? Like what gets you out of bed out of the house? What makes you smile?
My father who is 65 years old, diagnosed with NPH long time ago (around 10 years) But out of his fear he never wanted to do the shunt. Now his symptoms are getting worse. Walking imbalance increased, urine urgency and headache. We are from Bangladesh, went to Thailand for his treatment. Doctor suggested to do the shunt. However he is 95kg which is obesity. Doctor told us to take two/three months and during this time he suggested to take Munjaro for weight loss. Then come back aftee 2/3 months to do the shunt. My father is pre-diabetic, no hypertension. But I am genuinely concerned about the safety. Is the shunt operation safe for his age and weight?
My son was born at 25+4 weeks. Now he is 7 months actual, 4months corrected. He spent most of his life in the hospital. He’s had grade 3/4 brain bleed, post hemorrhagic hydrocephalus, BPD, PDA, inguinal hernia. He id NG tube fed, still teaching him sucking.
My main concern is his milestones. He never properly cried, he reacts to pan. He was not looking for my voice. He was hypotonic before but now I feel his arms and legs stiffening. He does not have head control, his head is so flat on his right side. We are planning to get helmet therapy but his neurosurgeon said it might not be possible because his skulls are fusing.
I worry about lots of things. I am trying my best to stimulate him at home. In the children’s hospital he was on PT, OT and SLP. We are still waiting for his appointment soon.
I feel like I am failing him. And I am scared for the disabilities to surface. Does any parent here have a baby and not crying?!
I’ve had my shunt for almost a year and the entire time I’ve had pains along the tubing. From my neck/shoulder down to my stomach. The worst is random stabbing stitch like pains in my stomach that make it hard to take a deep breath. They last a few minutes, but happens multiple times a day. A friend who has had a shunt much longer than I have has said this isn’t normal.
I’m waiting to see my neurosurgery NP next week for an adjustment as I’m also having high pressure symptoms and figured I’d ask him then. But is this something I should be more concerned about? It has not gotten any better after healing from surgery.
Just got out of a neurosurgeon appointment. My shunt is apparently broken and has BEEN broken for years, but it’s still functional. My neurosurgeon “60% recommends” surgery to prevent a future problem, but it’s ultimately optional. I have no idea how to decide that, I was a minor last time I had a shunt revision and it wasn’t presented as an option. It’s also not lost on me that this thing acts up every 14 years and it’s year 14 😒😒😒
I’m scheduled for a robotic hysterectomy later this year and have a history of obstructive hydrocephalus due to aqueductal stenosis. I had an ETV many years ago and have been stable since then, and the recent MRI flow study shows good flow.
One thing that’s making me nervous is the surgical positioning used during robotic hysterectomy (called Trendelenburg, where you’re tilted head-down). From what I’ve read, this can temporarily increase intracranial pressure.
My neurosurgeon has cleared me for surgery, but I’d really love to hear peoples experiences from anyone who has increased pressure in their head and had robotic hysterectomy.
A few questions:
Did your neurosurgeon have any concerns before surgery?
Did the anaesthesia team make any special accommodations?
Did you experience headaches, vision changes, dizziness, or any pressure related symptoms after surgery?
How long was your surgery, and how steep was the Trendelenburg position (if you know)?
Looking back, was the ICP issue a non-event, or did it affect your recovery?
I’m aware everyone is different and I’m not looking for medical advice, just hoping to hear from others who have been through something similar. I’m a bit nervous about this!
Thanks!
I recently reached out to some clinical trial people for shunts (Rhaeos… they have a device that measures csf flow rate in real time). They told me to come to the hydrocephalus Association conference and enroll there. It’s going to cost my husband and I $600 for us both to step foot into the conference. I emailed the association and asked them for scholarships and they said they ran out of money for that long ago. I am now offering labor in order to get into the conference for free. Since when do we bar hydro patients from healthcare access ? They can’t just let a patient in so the patient can enroll in a clinical trial? and yes, I say “healthcare access” because people with chronic, incurable illnesses rely heavily on clinical trial research as their healthcare.
I’m excited to receive the same monitoring that diabetics have received for over a decade I just don’t wanna pay $600 upfront to go talk to the clinical trial company and enroll.
I don’t mean to make this post to scare anyone im just kind of shocked and im also looking for answers to my curiosity about hydrocephalus.
I lost touch with him during and after high school but he was born with hydrocephalus and had surgeries growing up, he used to be my best friend. Last year he was working in northern Canada planting trees and after his 12 hour shift he just dropped dead from hydrocephalus.
Now again since I lost touch with him and his family I really don’t know the things like if he needed more treatment but didn’t get them, etc. but for people born with severe hydrocephalus can they really just die suddenly like that?
It’s very sad, I hope he’s resting easy and I hope his family is doing okay. He was a good guy.
Hi just wondering if anyone here has experience of having a miethke pro gav gravitational shunt?
I had one inserted in January after months of overdrainage, which was causing symptoms like fainting air hunger. It got so bad to the point where I couldn’t stand without fainting.
This shunt is definitely much better as I can stand and walk etc now, however, finding the right setting has been tough. I started on setting 15 which was way too high and gave me symptoms of hydrocephalus, scans also showed my brain was full of fluid. I dropped to setting 13 and then to 10 over the last month or two. Setting 13 was still too high because I had incontinence and other symptoms related to hydrocephalus.
On setting 10, I didn’t have as much symptoms of hydrocephalus, however my depression and obsessive thinking came back - these were the first symptoms of hydrocephalus I had when it wasn’t affecting me physically - these symptoms vanish instantly when the hydrocephalus goes. However, on setting 10 I also had “prickles” in my forehead which was a first symptom of over drainage.
Today, I was moved to setting 8 - my doctor said when I was sitting and he measured the pressure I was -7. He said this was normal but my other consultant changed the shunt when I was at -10.
I’m going to monitor the symptoms over the next week but can anyone tell me if they have had experience of a setting making a major difference? Aka going from setting 10 to 11.
Thanks so much
I am 43 years old and have a complex medical history that began after I suffered a traumatic brain injury in 2024. At that time, I was diagnosed with hydrocephalus, which the doctors indicated was likely incidental. An external ventricular drain was placed but later removed. Unfortunately, due to persistent headaches, I underwent VP shunt placement surgery a few months later. This procedure led to a series of significant complications, including pelvic issues and constant abdominal pain.
I have had multiple abdominal interventions and continue to experience pain in both my abdomen and pelvis. Additionally, I suffer from tension headaches and significant neurological disturbances, despite numerous adjustments to the shunt's settings. Recently, a new neurosurgeon reviewed an MRI scan from 2024 and informed me that it shows no evidence of obstruction, which means I am not a candidate for an endoscopic procedure.
For now, the neurosurgeon has recommended a lumbar puncture to more accurately assess my pressure levels. If the pressure turns out to be normal, he plans to prescribe other medications to manage my headaches, which he believes may not be related to intracranial pressure. On the other hand, if I continue to experience abdominal discomfort, the only viable option would be to relocate the catheter from the pelvis to the lungs.
Everything that has happened has left me feeling very anxious. I would like to know if anyone else has gone through something similar or if I might simply be overly sensitive to pain. Should I endure the pain and stop seeking further medical consultations?
For context I (29) am a C5/6 quadriplegic but my VP shunt was placed before my injury. I am currently seeing a neurosurgeon who is addressing my syringomyelia and associated hydrocephalus. We are in the process of seeing if/how we need to surgically intervene because it appears the shunt in my spinal cord has failed, as the syrinx is expanding and my ICP is going up.
I recently had a shunt tap and my neurosurgeon checked my pressure a week ago. I believe he said it was at 22 and he would've liked to see it below nine, so he adjusted my strata from a one to a .5 and I'm getting a follow up CT on Friday to assess if it's made a difference.
I'm seeing a minor increase in muscle engagement, which is reassuring, but the pain in my neck and head has skyrocketed.
I know it's weird, but the only thing that helps is rapidly hitting my forehead with my wrist, or shaking my head.
Has anyone else experienced something like this? I don't know how to describe it other than it feels like my brain itches?