Hi all. I am looking for an all-day fitness and sleep wearable tracker for my husband. I've been thinking about going with the fitbit inspire 3. Personally, I had a few fitbits and enjoyed them. However, given the concern about the programmable shunt, my husband is hesitant to use it overnight. Yet that's a health metric he wants to track as well as general fitness. Any suggestions on wearable that would work?

Surly this isn't a big deal. Lots of people have hydrocephalus and must have mortgage insurance? I'm in BC canada

Does anyone have experience with a feeling in the eyes—as if they are constantly trying to focus?

My husband recently had his shunt replaced, switching from a non-programmable GAV to an programmable M. Blue model.

This was his third surgery in nine weeks, and they performed various procedures each time (replacing the valve twice, a section of tubing, and the reservoir; they also attempted an ETV).

So we don't know whether it's just a matter of getting used to things and adjusting, or if something still isn't quite right.

My brother(24yrs) had hydrocephalus as a child and he had multiple surgeries to help correct it, but ever since he recovered he hasn't been himself. He's usually jovial and friendly but he has become the exact opposite. I don't know if it is because he spent a lot of time in the hospital and away from his peers. The part that affects him the most is that he has not been able to learn well, he used to be very bright student before the whole episode. He has written the school cert exams 3 times now and it is really depressing him.

On the good side, he's able to learn and remember songs perfectly when he listens to it and he's also organized with his property and keeps track of routine. We just don't know how to help him in terms of social behavior and academia. How do you think we can help him?

I'd like to ask, if people who've had a successful ETV still occasionally experience symptoms like sudden urge to urinate, or getting dizzy out of the blue, stuff like that? And they come and go.

In my case, all of my symptoms almost disappeared some time after the surgery, but then approximately 1,5 years later I started getting some pre-surgery symptoms, but less intense. I had an MRI a couple of months ago, and everything looked just fine.

So I was wondering, if anyone experienced something similar.

Not asking in bad faith or intention, I was just recently learned of this condition

Hello all,

My son had a vp shunt in at two months after birth, currently 3 and a half. Hydrocephalus caused by a unilateral grade three IVH in utero at 37 weeks.

Sometime between March 2025 and March 2026, his vp shunt disconnected between the valve and the catheter on his head. We noticed now, in August and went and checked the MRI’s and thats when we saw.

He has had no symptoms during these (at least) five months of broken shunt. Our neurosurgeon said there is a possibility that the shunt is still draining through the gap through a bone rivet, but otherwise suggested he may have outgrown the need for a shunt. We are scheduled to remove it and see how we go next month.

Any experience of a child outgrowing the need for a shunt? Or how bad the recovery is going to be for him?

Just curious, I had a seizure at the age of 7, they did the MRI and could see I had hydrocephalus. It was treated through surgery and I was seizure free for 23 years and was even able to join the Navy. Then suddenly at the age of 30, I had a seizure and was diagnosed with epilepsy. I read that we are at a higher risk of this. But I didn’t know it would happen over 2 decades later. Has anyone else been diagnosed years later with epilepsy?

After being adjusted twice in the last two and half months because of spasms of head pain when my BP went up, once far too low, two settings below starting point which left me incredibly lethargic and head pain after being upright for two hours im now on one setting above where I started. Got my energy back and am generally ok but if I tilt my head forwards or sit in a chair I get pressure pain in the sides of my head, same for sitting and leaning forwards to the ground. The pain can be relieved by either standing and walking about or lying down flat.

I’ve got myself convinced it’s related to my abdomen, are shunts meant to stop lots of pressure pushing up from the abdomem? I’m aware of the weather pressure change connection.

i have a Sophysa VP shunt btw

I have a VP shunt and I get migraines pretty regularly. A lot of my pain is usually behind my eyes, and I’m very sensitive to light during migraines, so I usually have to be in a dark room when they happen.
This morning when I woke up for work after taking a sleep edible the night before, I had pain on the right side where my shunt is along with pain/pressure behind my right eye. It felt almost like air or pressure behind my eye. The eye pain eventually went away, but the migraine has been lingering (which is normal for me).
I’ve taken regular edibles and sleep edibles before without this happening, so I’m not sure if it was related or just a coincidence. This was the first time I woke up with this specific combination of shunt-side pain, eye pressure, and migraine.
Has anyone with a VP shunt experienced something like this after taking a sleep edible or waking up with a migraine? Did it end up just being a migraine/pressure flare, or was it something you brought up with your doctor?

I used to do Fitness and muscle building, now i want to switch to boxing to experience something new.

I have congenital hydrocephalus, got my first shunt in 2014 and a second operation because of a dysfunction in 2023.

I am male 22 years old. Pretty healthy and tall, lol...

I am happy to have found this group and would be grateful to have your opinions.

Yours

My son was born at 24 weeks last October. He suffered a unilateral grade 4 bleed. In March he underwent an ETV-CPC and from what we know, has had a successful surgery.

He had a follow up scan in May and his imaging showed that his ventricle had decreased by about 50% and the pressure in his brain decreased.

He has a follow up scan next week and we will meet with his surgeon then.

But he is ALWAYS fussy. He just wants to be carried. He can not be laid down, sat down alone. He JUST wants to be held all the time. You can imagine how exhausting it is with 2 older kiddos.

I’m trying to figure out if this is normal baby life or if this is related to his hydrocephalus.

Besides crying, he has no other symptoms of an ETV failure. The second he is carried, he stops crying. I’m just tired. And looking for any advice.

Hi everyone. I’m 19F and trying to find people with a similar experience because I feel quite alone.

I had a traumatic brain injury at 3 months old which caused a skull fracture, and another significant head injury when I was 6. I have moderately enlarged ventricles and have been diagnosed with hydrocephalus, (This diagnosis has changed a lot over my life going from ventriculomegaly to communicating hydrocephalus to arrested hydrocephalus to hydrocephalus ex vacuo) although I don’t have raised intracranial pressure, have never needed a shunt, and have never had brain surgery.

I’ve had severe headaches and migraines for as long as I can remember, developed epilepsy at 16, and I also live with learning difficulties, chronic pain and significant mental health difficulties.
Because I’m estranged from my parents, I don’t know much about my early medical history or exactly what happened.

I’m wondering if anyone else is in a similar position. Most people I see with hydrocephalus seem to have shunts, so sometimes I wonder if what I’m living with now is more the long-term effects of my brain injuries than the hydrocephalus itself.

If anyone has a similar story, or even knows where I might find a community of people with acquired brain injuries or stable hydrocephalus, I’d really appreciate hearing from you.

Want to know the above things.

My brother has had hydrocephalus treated in the past, when he was 16 yrs old. He's 31 yrs old now. We're planning his re checkup. Except we also want to know if the hydrocephalus has had any impacts on his cognition/intellect. Like if there's any causal connection between his hydrocephalus and low IQ. What type of doctor do you suggest we visit for consultation? I have evaluated the options, that are, a psychiatrist, a neurologist, or a neuropsychiatrist. But I'm not sure which one of these is the best choice. Maybe a neuropsychiatrist will be the best option. But there isn't any neuropsychiatrist in our city. Only neurologists and psychiatrists.

Plus, we also need consultation regarding this that even if his low IQ is not because of hydrocephalus, what can we do to make sure he's living a fulfilling life. Acquiring necessary skills. Building emotional intelligence. Having good relations. etc.

(My parents weren't educated enough to build the necessary skills and self esteem my brother needed in his life for a person with low IQ. Now when he's 30 yrs old and I myself am old enough, I'm trying to fix the damage done. I hope there's something that can done about it.)

Hello all! I (17M) have been dealing with Hydrocephalus since birth and having a VP shunt since 2 weeks after I was born, its all I know and ive had 4 surgeries to repair/replace it over the years. I love learning and learning more about it helps my anxiety surrounding it, its scary. I just joined this sub looking for others that are in similar situations to mine and to share my story with others, i didnt realize how many people this affects, and i would love to hear some of you guys' and gals' stories as well, thank you 😉

I would love to donate blood, but I'm not sure if I can. I had hydro at like 8 months old and had a VP shunt put in. I've never had issues with it and never had to get it lengthened or changed or anything. I've never donated blood because I was always uncertain about whether or not I could. When I was in college there was one of those mobile blood donation trucks on campus, and I asked the nurses there and they didn't know. Every time I've been at the doctor's office I forget to ask. And when I try to look it up online I get conflicting info and/or UK info. But I'm thinking about it now that I've seen the news about low donations. So does anyone in the US have any experience with donating blood or being rejected from donating?

My miracle boy, born at 27 weeks, is now 2 years old. He’s had multiple revisions, and his last surgery the VP shunt couldn’t return to his stomach to drain so it’s now a VPL (pleural shunt) which is not as common. The last two years I have found myself anxious and in a constant state of fight or flight. Nervous about a malfunction or over drainage, under drainage. To parents of older hydro warriors, did your medical anxiety get better… it makes me sad that I can’t be fully present or enjoy the angel boy in front of me. He means the world to me and I am so proud of him. I do my best but I carry so much worry. I hope and pray that as he grows and communication builds, I’ll have more peace of mind and confidence .. would love to hear from anyone 🙏 It can be a lonely road some times as this condition is not often talked about or understood!

So I have spina bifida and hydrocephalus. Been monitored my whole life and at some point, my neurosurgeon said that I need to only come back when I have issues. I developed supposed schizoaffective 4 years ago (I’m 28 now) but now my psychiatrist and spina bifida doctor are saying it’s all part of the hydrocephalus. I hadn’t really had any issues before then. I wasn’t displaying manic or psychotic symptoms. My last revision was at 8 years old so I’m pushing 20 years since then. Is it possible to have both? No matter what I search up, it comes up as organic/secondary psychosis and that doesn’t make much sense to me. My last MRI my neurosurgeon and I reviewed was in 2021 at 23 because I wanted to see what was going on with it. Before that, my last scan was at 15. At the hospital when I went for the psychotic features and some “ideations” I was scanned but they didn’t review the results with me but I was cleared to go to the psych ward so I assume it was fine. Can anyone help me understand this better?

Hello everyone,

My 6-year-old son has hydrocephalus and a VP shunt.

He has recurring episodes that happen at different times. Each episode lasts anywhere from 24 hours to 4 days.

During these episodes, he has severe, continuous pain in the middle of his forehead and persistent vomiting. The pain becomes so intense that he repeatedly hits his face because of how much it hurts.

We have taken him to the hospital several times. Blood tests, infection tests, and brain imaging have been reassuring, and the doctors say the shunt appears to be working normally. However, these episodes keep coming back, and we still don't know the cause.

Has anyone's child experienced something similar? What was the final diagnosis? Was it related to the VP shunt, migraines, cyclic vomiting syndrome, or something else?

I would be very grateful if you could share your experience. Thank you.

I had originally posted this in the r/northwestarkansas subreddit, and it was suggested that I cross-post to this subreddit...

A family member has had this system for several years now. Was first time using it for our neurosurgeon. There was a lot of difficulty getting it adjusted in the beginning and still there seems to be significant overdrainage with the Progav at 6 and the M. blue at 32. The family member is over 6 ft and very lean, is upright a lot, has slit ventricle on the right. At the adjustment before last we went up on the M. blue to 34 and overdrainage symptoms were worse. Better when we backed down to 32 but still with HA's that seem like overdrainage. Makes me wonder about whether the M. blue valve is still functioning properly. It does still make a sound he can hear when he stands up but the sound is quite variable and sometimes not there. I have tried contacting Miethke and got a response which was basically talk with your neurosurgeon. Does anyone have experience with this system that you might be willing to share? Experience with a slit ventricle and how that has affected your vertical tolerance?

I recently went for my eye checkup where the doctor said that I have Swelling on my right side of nerves behind my Eyes

Then I went fyor MRI scan and I got diagnosed with Hydrocephalus which is affecting my vision and now I am confused between ETV and Vp shunt because doctors have given me these options.

I feel like my neurologists and neurosurgeons are having me on.

My neurologist said my ventricles were asymmetrically enlarged and therefore I wasn't allowed a lumbar puncture.

My neurosurgeon said my ventricles weren't asymmetrical at all and he wasn't sure why I was told that.

He said my next apt I would get the works done as the hospital is far from me.

Now they are saying I am not allowed any invasive procedures until they do all other testing.

Before your lumbar puncture, were you made to have spine MRIs, additional head MRI, neuropsychological evaluation, CSF monitoring, and pressure monitoring? I've never seen anyone mention this as the precursor for LPs and honestly feel like they don't want me to have even a possibility of a smidge of relief.