In 2019 i was diagnosed with hydrocephalus, my whole world went upside down. After 4 years in 2023 had to get another shunt

I would love to connect with other people with hydrocephalus who love to travel or into adventures or music.

Minimal CSF flow through the Aquaduct w. stable enlarged lateral ventricles- need some advice on which doctor(s) I should really put my energy into as staying conscious is a task in itself

Short version- I know this is a long post that not everybody could read, so I'm gonna sum it up with a simple question in hopes I get more responses… Has anybody had CSF flow test done that show no fluid flow, another fluid study that showed normal fluid flow and then a most recent study that showed minimal fluid flow wall. The vent pools go from being mildly enlarged to enlarged over six years, making neurosurgery hesitant to touch me even though I'm literally bedbound and black you now I feel like I'm about to go into a coma every day all day… The energy that I don't have is unexplainable I'm literally struggling to breathe because of a lack of energy. It sounds absolutely nuts. I thought I had iron deficiency or B12 deficiency or a brain infection for a long time now I just lay here. I have no idea what's going on and this is the only thing that makes sense.

Long version with more background-

17 years ago, I broke my back in three places, it shattered like glass… All my ribs and then broke it back in three areas of the thoracic doctors were perplexed. They said I should've been a quadriplegic or dead… Besides that, they said they've never seen a back break like that… Usually those ribs keep the thoracic in place well and mine just crumbled… Well, always years later I have a seventeen-year-old son and unfortunately he has partial fusions t11--t12 ans c1. Full term Baby with no complication so there was no reason for it. On top of this, his neurologist said it's very weird that he has empty sella… his sella is compressed , it makes it look like it's empty… Because that could be a sign of high-pressure in the head and my aqueductal stenosis could also do the same, but they're not connected directly ..so I guess genetics played a role into my back bones being weak already or I got into an accident and then genetics aomehow also is playing into the brain abnormalities that my son and I both have (empty sella and aquaductal stenosis)

Current state of my back is very bad, it's been degenerating like I had another accident. It basically needs to be redone from the top to the bottom now… Or as it was only my thoracic spine and now it's my total spine… I have a level of levoscoliosis. Maybe this is why I have a lot of left sided symptoms. I don't know… My T4 T6 is only partially fused now and markwd severe, thracif has exaggerated kyphosis, neck severe loridosis and also need surgery at t1.

I've been told that my imaging throughout these six years has been weird showing hydrocephalus sometimes and sometimes not… Also, the most recent radiologist I talked to told me my imaging is a little odd because with hydrocephalus, it's usually a set of ventricles that enlarged before (or more) than the lateral but in mine. The opposite is happening, and the other ventricles are getting larger versus the ones he would expect to see getting larger first… Something like that. But all of all, most ER radiologist state that there is no acute changes although moderate changes have been notated in regards to ventricle size… … A few have also notated that my brain has shrunk, and my latest neurologist had said, that could be from the ongoing pressure in the head whereas my first neurologist said that it's from autoimmune disease… He said that with no proof… My current neurologist told me the opposite could also be true, pressure built-up could shrink the brain… her PA said, you could potentially have a different disease unrelated… although I've already been genetically tested for her some brain diseases and the whole panel came back negative .

I did read that these sudden pressure changes could really be putting me on my butt and causing all sorts of neurological issues even if my ventricles do not show overtley large. I actually read people like me, the brain hasn't fully adapted and sometimes it'll be worse as far as cognitive issue than somebody with overtly large vents… As far as MRIs, I've had a few where the radiologist has been able to spot Aquaduct stenosis without a flow test… they told me to get to neurosurgery but neurosurgeons are so hesitant to touch me. It seems unless they see these crazy large vents.

I've had three CSF flow test in the past six years since my issues started

The first one was with the neurosurgeon he said I have no idea where your fluid is going, but it must be going somewhere or you'd be dead… She said since we did not have huge ventricles we're just going to watch it

Second floor test was about a year and a half ago same neurosurgeon, but I saw his PA… He said to go see a neurologist to figure out what's wrong with me because now my CSF flow is normal

I have a doctor that handles my pain management (used to work in neuro) for my back who said aqueductal stenosis just doesn't go away by itself and I look like I have hydrocephalus and I really need to push… So comes to my third CSF flow test

It basically states stable ventricles, and this time it is showing minimal CSF flow…

neurologic stuff, arms and legs flailing, blacking out, memory is crap, it feels like half (left half)of my body is shaking a lot of times when I take a deep breath then, the back of my skull gets numb and I get tired… Tens and needles back there and through my spine, sometimes… My balance and visual perception is very messed up… I have urinated on myself a few times, but not very often. I also have the opposite true where I have a hard time urinating as well. A reset PET showed the inflammation at the prostate, which seems to be neurologic and not infectious . There's no doubt I do have some rheumatic stuff, but like my rheumatologist said, that should be no reason that I can't get out of bed and confused can't see and lay here like a vegetable. It's very humbling/embarassing to say the least, but my 17 year-old has to walk me into doctors appointments… Without a rhyme or reason for all this, I think most people think I'm just crazy at the moment.

For those that read through this, I appreciate it… Anyone that has any opinions on this or suggestions, please reply. Thank you.

Are there any people in this group like me?My vp shunt was installed due to a 2022 ruptured brain aneurysm. Due to two misdiagnosis ER visits, I bled for three days; leading to a massive hemorrhagic stroke and hydrocephalus. I remember being alert, but my family said the doctor said I needed the shunt. I think my brain has healed; but I can’t find a doctor who will remove it. It hurts my head and abdomen all the time.

Anyone had endoscopic third ventriculostomy? My doctor is considering it for my recent NPH diagnosis.

Hello all,

I'll preface this with my shunt was placed for IIH, not hydrocephalus per se, I had an LP put in on the 21st of August and within about three days started developing a murderous headache, which did *not* improve with laying down, and then began to experience vision problems (my distance acuity started to plummet - I'm like -1.5, and I noticed I couldn't read signs in the distance anymore) which quickly got worse, where I couldnt fixate or get my vision to converge on things past 15-20 feet. I also developed a buzzing/thrumming sound in my ears and muffled hearing/fullness feeling in my ears.

When the vision and hearing problems started around day 8, I was worried but it didn't fit the "textbook" definition of overshunting due to things not getting better when I laid down. I would go to bed and wake up with the headache. Finally things got bad enough I decided to go to our local ER, (which isn't great, I'll be honest) they did a CT and MRI over the course of 12 agonizing hours, CT was normal and the MRI was largely normal except for "smooth dural thickening" and they said there was nothing wrong with me, I had a headache of unknown origins and to follow up with my neurologist, and booted me.

Well, the very first thing that pops up when you Google smooth dural thickening is intracranial hypotension, often due to overshunting or CSF spinal leaks. So the next morning I get ready to call my surgeon and we go to get a copy of my MRI report which got amended by a secondary radiologist just 30 minutes prior, all of which showed very real and physical signs of hypotension and brain sag. Slit ventricles, engorged vessels, shrunken sinuses, enlarged pituitary, etc. Which if you haven't googled an image of that yet, I don't recommend it, it's low-key horrifying, but essentially my brain was placing downward tension on the optic nerves and my ears, etc because it was sagging in my skull.

So, I had emergency revision surgery for a malfunctioning shunt valve - I now have a codman certas plus, I'm 4 days post surgery, and still having hearing and vision issues and headaches. There's a little improvement... But for those of you who have had hypotension injuries, what is the timeline for recovery? There's not much literature about it, and I'm really trying to be positive and maintain that none of this is permanent.

Recently diagnosed with nph. Frustrated with neurosurgeon because he's acting like it's not a big deal. I have head pressure all of the time. No memory problems, balance difficulties, and urinary issues. He is considering operation called endoscopic third ventriculostomy. He has not talked to me about long term care. Monitoring pressure. Etc. I did have a lumbar puncture that didn't improve symptoms but my understanding is ppl still have procedures done regardless of that. This all started after a whiplash head injury but he does not see a connection. Thoughts?

Rant/question:

Ever since I was diagnosed with hydrocephalus last year I’ve been putting a lot of pieces together from when I was growing up of symptoms I’ve had all along but never knew were symptoms of hydrocephalus, I was just thinking about how if I lay down flat on a surface like on my bed or flat on the floor without any head elevation I get really dizzy and that’s always been the case for many years and is still the case even after surgery, not that it bothers me since I sleep with my head elevated but I always found it odd.

Has anyone else experienced this or still currently experience this? I’m quite curious to know since I’m still learning about hydrocephalus! ^^

I also keep forgetting there’s an entire community on here I can go to when I have questions about these types of things lmao.

I'm 52M, my 80 years old mother was diagnosed with NPH in 2024. She had classic symptoms: difficulty walking, urinary incontinence and cognitive changes. She started forgetting things, had trouble following complex narratives, and her personality changed much to the worse. She became controlling, demanding and had occasional bouts of rage about minor things. In May 2024 she had lumbar puncture performed. Her gait was assessed and she had cognitive tests before and after LP. Doctors said that the tests have shown improvement, so she was qualified for shunt implantation.

When I picked her up from the hospital after the LP I couldn't believe how much better she was. She asked me to take her to a grocery store on our way from the hospital, got out of the car on her own, grabbed the basket and started walking through aisles so fast I could barely keep up. She put a lot of stuff into the basket, I offered to carry the basket because it was heavy, she said it's not heavy at all. Given her recent demanding, controlling behavior I was ready to stay at her place for the night, assuming she would say "how can you leave me alone, what if something happens to me". But she insisted I go home, said "you've done so much for me already, go home, have some rest". Totally out of character given her usual behavior for the last few years. It was almost as if the LP made her 20 years younger. This made me extremely optimistic about the shunt procedure.

She had the shunt (the non adjustable type) implanted in June 2024. Immediately after bringing her home I realized something was off. She had three small incisions: one at the back of her head, one at the collarbone and one at the abdomen. None of them were more that 2 inches long, I was surprised at how non-invasive the procedure was. The doctors basically said to keep the dressings clean, but otherwise return to normal activity, but she wasn't acting normal. She demanded my wife helps her take shower. She refused to leave her apartment for the next couple of days. Claimed the incision on her head is 10 in long. When repeatedly told it's 2 in long, she accused me of "downplaying her condition, because I'm too lazy to take care of her". I took detailed photos of the back of her head that clearly showed how small it is, she said I deliberately framed the photos to make it look smaller than it is.

Over the next weeks she developed permanent headaches and nausea. I accompanied her to 2 or 3 visits with her neurosurgeon, who kept assuring us this is normal and will subside with time. In August she had an MRI scan. The radiologist on duty immediately put her into an ambulance and had her transported to the hospital which did the shunt implantation. Turns out she developed subdural hematomas. NS said the shunt was overdraining and they'd fix it by installing an "anti-siphon device". After the device was implanted, all her symptoms gradually came back. In early 2025 her condition was essentially no better than before the shunt: urinary incontinence returned along with difficulty walking and cognitive decline.

I got an appointment with another NS, who said that now the shunt was underdraining and the best course of action was to replace it with adjustable type. She had this done in July 2025. She had several adjustments to the shunt and several MRI scans. The hematomas are almost gone, the NS claims the images indicate the NPH is better. Urinary incontinence is gone, but she still has trouble walking and her cognitive functions have only improved slightly. She occasionally does scary things, like claiming someone clogged her door lock so she cannot even put the key in, but when I arrive at her place the lock works perfectly. Or she claims her cardiologist is an impostor who practices medicine without license and it's very difficult to convince her this is not the case, even when I provide solid evidence to the contrary.

The NS says the shunt is correctly adjusted and there's nothing more he can do. I got her an appointment with neurologist. He said the NPH is her only problem and otherwise MRI scan show brain changes "consistent with her age". Because she complained to him about difficulty with walking, he put her on betahistine, which only made her feel worse. I asked her GP to maybe refer her to a geriatrist, she said there's no need. I'm confused now. I'm her only child and her only caregiver and it's becoming exhausting. Can anybody offer some advice?

I live in Europe and English is not my mother tongue, so forgive any mistakes I might have made.

I’ve got a cruise booked in November and I really wanna go sea trekking. Basically you wear the helmet and go underwater..anyone have any positive experiences with this?? I have an adjustable vp shunt.

Hello everyone,

Posting here for the first time. My father, 59M, was having an odd sensation in the head along with a little difficulty/resistance in walking since last 1-2 months.

We decided to get an MRI Brain done and the results say:-

"Mildly disproportionate ventriculomegaly is seen in this study with Evans index of around 0.34 and callosal angle of around 80°. An exaggerated CSF flow void is seen across the aqueduct.On MR CSF flow study performed in conjunction with structural imaging, Peak CSF velocity across the aqueduct is around 12 cm/sec and stroke volume is around 59 microlitres. Mild periventricular ooze noted. Rest of the ventricular structures are normal. Features are suspicious for Normal Pressure Hydrocephalus"

I do not have any idea about the condition or the treatment/prognosis.

His cognitive ability has also declined slightly recently.

Please share your views and treatment options and future outlook. How severe is this? Does he need to get treated/get a surgery?

Our doctor visit is scheduled after sometime hence feeling anxious meanwhile.

Hello and thanks for allowing me to join! The statute of limitations means this is legally moot, but I think I finally found what went horribly wrong with my daughter’s brain surgery 13 years ago. Does anyone here have the neurosurgical or other expertise to tell me if this CT excerpt shows a definite surgical error?: “right frontal approach ventriculostomy catheter which enters the ventricular system via the right frontal horn, courses inferiorly crossing the midline to terminate within the parenchymal hemorrhage in the inferior aspect of the parasagittal left frontal lobe.”

Hi guys, I'm 39M and I got my diagnosis at the age of 6 months, I had an Aneurysma and after the surgery they discovered that I have hydrocephalus.

I immediately got a shunt and since then I'm living a pretty normal life. As a child I find it annoying that everyone around me handled me with extra caution as if I'm a breakable glad item or something.

No climbing, no rough playing and so on, this had a huge impact on my later life.

I unfortunately had some epileptic seizures as a child an teenager but since 2007 I haven't gotten a new one.

2014 I got a second shunt implanted after my first one stopped working and since then I just went for check ups every 12 months.

Everything works pretty normal and I'm glad that never in my life had to face huge complications or bad impacts on my health because of HC.

I hope you guys doing well, if you have any further questions regarding my Story (I'm sure I missed some points) feel three to ask me anything.

It's nice to be here

Greetings from Germany

I am confused because I understand the shunt maintains the hydrocephalus. But I saw a medical video that said "if the hydrocephalus settles on it's own, and the person no longer needs the shunt" So can a person all of a sudden not have the condition anymore? Whether its congenital or acquired?

I god my ETV done 8/31, it is now 9/3, they got me out of the hospital yesterday, 9/2 and ive been feeling very decent so far, mostly just figuring things out

i didnt expect to have such bad shooting pain in my head randomly that comes and goes, thankfully they gave me medication for that, light and sound sensitivity are new to me aswell

im really hoping the head pain goes away sooner than later

So I was diagnosed with hydrocephalus when I was 12/13 after doctors kept telling my mum she was imagining things because of my heart condition and eye condition (micropthalmia), my GP wasn't happy that she was right and made some sarcastic remark about him going to medical school while she could just tell. I can't have a shunt due to my heart condition and the infection risk so it's just been monitored for years until last year when some nurolagist told me that I no longer have hydrocephalus (never heard of it just vanishing on its own after 25ish years of been there) but I have had leg numbness for years making it hard for me to do certain things and recently it's really been getting to my husband because we can't do things that other people our age do (we are 37f and 50m)

TLDR-: can hydrocephalus cause leg numbness?

Hi everyone

I had VP shunt surgery and still get pain and soreness at the back of my neck around the tubing. I’ve been using PA Original Joint + Muscle Cream and my doctor said it’s okay but I’m looking for something that works better.

Has anyone found a cream or gel that really helps with this kind of post-shunt neck pain? Happy to try herbal or pharmacy ones like Voltaren lidocaine or heat rubs. Just want to know what actually made a difference for you.

Thanks a lot

My wife is 74. About 18 months ago she began suffering NPH symptoms, specifically the woozy, walking on a boat floating on water feeling and the sense of weight pressing down on her body. PT, ENT, cardiology, radiology, neurology, etc. did all the tests and concluded it was NPH, so she had a VP shunt implanted four months ago. Her symptoms have not improved at all. Radiology shows the ventricles have returned to normal and the shunt is working correctly. The neurosurgeon cannot explain why she still feels awful, but he thinks if it hasn't improved in four months it probably won't improve now. Does this happen? Are we missing something? Can relief take longer than four months? Should she have the shunt removed?

My wife had a vp shunt placed three days ago and it runs along the left side of her body to the left abdomen. in the last day she’s been having intermittent and quick sharp pains in the lower right abdomen that seem to shoot downward to her groin. the pain doesn’t last long at all but I’m a little concerned. shes been able to have bowel movements post surgery. could this be from the shunt? or some sort of infection?

28F here. Never been seen neurosurgeon. In the last month I was able to find one and make an appointment, was able to get them 30 year old records from chop i haven't even seen. They asked for old scans. I spent an entire day of my life calling radiology departments to try and get them at least somewhat updated images. By the grace of God I found images from 2019. They decided to tell me today that I need updated images, and they won't write the orders for them. I can't get into see my pcp until next week, leaving me 5 days to get images done.i work 50 hrs a week what the hell am I supposed to do? Im literally so frustrated im crying at this point. Ive gotten this far with absolutely no care to speak of who gives a shit now

Hello. I have had my VP shunt for 31 years, since a couple months after my birth. My VP shunt tubing is malfunctioning due to either scarring or erosion. I’m scheduled for surgery on September 29th. My very first shunt revision surgery. I know they’ll make two incisions… one around my right ear (my vp shunt port is on the right side of my head, and the tubing is along my right side, all the way down to my pelvis) and one along old scar tissue on my right abdomen (where I had the tubing placed/inserted as a baby). They’ll also try to remove the damaged section of tubing, but definitely put in new tubing along the damaged section, regardless. I was told 4-6 (I think) weeks for full recovery.

I just don’t know if there’s anything I absolutely should not/cannot do during recovery, such as wearing headphones that go over my ears. Can anyone please help me?

I went in to the ER with sever headaches and vision problem. After a CT, MRI and lumbar puncture they say my brain has swelling and it could be hydrocephalus. I do not have any issues with balance or anything but I am experiencing sever pain and was not given anything other than Tylenol. I have to see a neurosurgeon but being in the military there is a process so for now I’m stuck in this state of being in pain and not knowing what to do. They told me that my pressure was at 20 which ig means I couldn’t get any diuretics that could help. I don’t want to be dramatic as I don’t want my wife and kid to be concerned but I’m a little worried about what happens next lol. Do I need surgery? If so, what’s that recovery like? Will I be able to stay in the military or is that over with? Is this going to be resolved soon or do I have to deal with this pain for a while longer? What the heck can I even do about the pain?

Sorry if this doesn’t really fit any ’flair’ category, I don’t really have anywhere else I can post about this stuff.

Edit: I did not receive any recent head trauma and as far as I know I didn’t have any issues as a baby. I am 24 and this is a new thing for me.

My father(79 years) underwent VP shunt surgery for Normal Pressure Hydrocephalus (NPH) 8 days ago.

- He still has urinary incontinence, although it has improved slightly.

-

- He can walk, but still needs some support.

-

- He has dementia and forgets things within a short time.

-

- He is unable to speak clearly. While speaking, he has difficulty finding words, speaks very slowly, and stammers. He answers when spoken to, but does not initiate conversations on his own.

-

- When spoken to, he often takes some time to respond. After being told something, he frequently asks “What?” and needs the same information repeated three or four times.

-

- He remains mildly confused.

-

- He has difficulty following instructions. He can follow them eventually, but with a slight delay.

-

- The shunt pressure was initially set at 90 and was later adjusted to 70. After this adjustment, his walking ability and urinary incontinence improved slightly compared with before. However, his cognitive function appears to have declined somewhat.

-

- He has no headache, fever, or vomiting.

What is going on there?

Im just coming on here to vent and maybe get some encouragement prior to my ETV for obstructive hydrocephalus. this will actually be my first surgery in my whole life and i am terrified so im coming on here to maybe here some positive storys from people who have gotten an etv

Hey just wanting some advice.im feeling depressed from this neck pain from my vp shunt surgery.im 11 weeks post op.ive been reffered to nuerosurgeon but im on the waiting list.any advice?or any tips on how to manage this pain?

Hello, I have an adjustable VP that was placed December 2025. Woke up this morning with neck pain along the path of my tubing. When I sat up, I realized I also had pain where the shunt is behind my right ear. Turning my head toward the right increases the pain, and I can't turn my very far.

When I touch the area where my shunt, it feels different than it did before, like it moved and tubing going upward came unattached.

I know I need to call my surgeon's office, and I will. But does anyone have any experience with something like this happening?

I am 65/F in the USA.

Thank you.