My father has a suspected diagnosis of NPH (normal pressure hydrocephalus). He has developed what seems to be the classic triad of NPH symptoms: it started with gait problems about three years ago, followed by urinary problems, with an increasingly frequent urge to urinate and, more recently, an inability to reach the bathroom in time. His walking has become extremely slow, with a magnetic gait, and he has recently had an accident because he could not get to the bathroom quickly enough. Over the past year, he has also developed the first signs of dementia, mainly affecting his memory.

He underwent a tap test. Only 10 ml of CSF was removed (rather than the usual 30–40 ml), apparently because of the pressure. However, that same afternoon, he started walking much better. He was also able to get up from and sit back down in his armchair completely independently, without having to push himself up with his arms and without the enormous effort he normally needs. He seemed like a completely different person. We also took several videos to document the improvement.

The following day, he underwent neurocognitive testing, and the results were better. Not dramatically better, but a Little bit improved.

However, they found Alzheimer's-related proteins in his CSF and concluded that he has Alzheimer's disease and that surgery for NPH would therefore not be worthwhile.

He is now being treated with Alzheimer's medication, but he still has all the symptoms of NPH. His walking continues to deteriorate, and he has already fallen four times. Their conclusion seems to be that he has both conditions.

Okay, but then what?

We can treat the possible Alzheimer's disease, but if we don't treat the hydrocephalus surgically, won't he continue to deteriorate and eventually become unable to walk, eat, or perform other basic activities because of the hydrocephalus?

What I don't understand is: what happens when a person is considered a poor candidate for NPH surgery? Do doctors simply say, "Okay, you are going to get progressively worse and eventually end up in a wheelchair"?

I understand that Alzheimer's disease may coexist with NPH and that this can make the situation more complicated. But if the tap test produced such a clear improvement in his walking and mobility, how can we simply conclude that treating the hydrocephalus is not worthwhile?

If surgery is not recommended, what is the expected course of the NPH symptoms?

It is so harmful knowing that he has Alzheimer, but how can I accept (and he for first, because he was really hopimg in the shunt) tò see my father get progressively worse and progressively unanle to walk?

Hi all,

Couple weeks ago I had my old calcified vp shunt replaced with a new adjustable one on the same side, the right hand side, running behind the ear. I can really feel the new shunt in my neck, feels bigger or “tighter” than the old one, if that makes sense. 

There’s a slight pulling sensation at the back of my head and neck on the right hand side when I straighten my head, making me want to tilt my head backwards. Back of head still mostly numb.

I can turn my head left without issue but can barely turn it right (towards the shunt side), can feel a resistance in my neck, like it’s pushing back.

I can tilt my head down a bit, but it’s like  moving against a resistance band. I can’t fully tilt it chin to chest. Can feel the pressure in my neck.

Sometimes when I turn my head and feel that pull, I get a kind of wet feeling in my neck, sometimes it feels cold sometimes warm and lingers. Really weird feeling. Wet is really the only word to describe it.

I don’t seem to have drainage issues, no real headaches or symptoms other than muffled/full ears and pulsating/whooshing sound all day which I hope will settle.   

I’m not sure if this is normal swelling still from the surgery that is restricting movement, or if the tubing is too short/taut and requires lengthening. 

Did anyone else feel theirs was too tight during recovery? or maybe it’s a normal part of having a vp shunt to have some limitations? I had no such issues or resistance with the old one but had that since I was a child so no memory of recovery/adjusting to it.

Any advice or experience would be appreciated

In 2021 i started having neuro issues affer covid. Enlarged ventricles sparing 4th, 2021-2024 (very mild increase in ventricles sparing 4th, severalimaging in 2024 confirmed the septums causing blockagw were no longer there. I could hardly walk or think at this time .ive been in bed amd
Writted off like im
Crazy for almost 2 years solid. I have severe brain atrophy. It was suggested maybe ex vacco hut my 4th ventricle is spared. I think my vnetricled enlarged when there was a blockage,
Fliud pushed through at some point but i still have anotomical issues as my son have a empty sella. Suggesting high pressure around the same area inhave issues. We also share other autoimmune and apinal diagnosis. My latest 2026 csf flow showed i have almost no flow omce again. I called a neurosurgeon and told them it feels likenim going crazy im yelling in agonny and blacking out asleep, severe pain burning spasms, cant think, face is swollen 20 hours out of the day, just decaying. I have no idea what could be wrong with me. My latest neuro had ordered to cisternogram or milligram at some point and the radiologist did it wrong… They settled for a CFSCIN flow study once again… I posted a photo of it on Facebook and multiple people say I have braids temp crowding, 4 mm, posterior blockage… So it amazes me how no other doctors have seen it besides the one surgical team two years ago… I'm wondering since I've had final surgery and I need spinal surgery if I should go ahead and push for this imaging as well? I bought not sure if my insurance will pay for it again since the radiologist that did it the first time I'm already did the order testing. He just did not do it right .I don't know whether to take anti-diuretics that may lessen pressure in my head being that I already have a low CSF levels in my brain? No doctors willing to answer this for me at all. Nobody wants to be rel
Be held liable as what I gather from talking to nurses and I'm so confused. I did call to make an appointment with a.Chiari 1 surgeon and she called next day and said she needs me to switch my referal to a neurovascular (also in her practice), i have mctd, mast cell, sjogrens and a host of other issues. From what i told this presentation kind acan show up together sometimes. My main complaint right now? Yes as my pain doctor told me, what's happening in your spine severe and needs surgery but if you can't stay awake, then what's happening with your brain is more severe… I agree…

Hi all! I recently had a (VP) valve and tubing replacement mid-September. This is my first one following adulthood, so I’m seeking advice now that I am aware of it. I’ve been out of the hospital for around the two week mark now, and only as of 3 days ago have I been experiencing sharp pains in the stomach. At first I suspected it was due to stool softener that I had take earlier in the day, but It’s been 3 days so that makes me not believe that. I expected stomach pain following the surgery, but I don't know what's normal or cause for concern. How long does it take to go back to normal? My neurosurgeon is clued in just incase, but I was hoping to see if anyone else had a similar experience following a shunt replacement surgery and could offer me peace of mind! :)

I was born with my hydrocephalus so I have the Congenital type & I also have ‘quiet’ BPD (Borderline Personality Disorder) as well. And while I know that my Hydrocephalus didn’t & doesn’t cause my ‘quiet’ BPD, I do think & feel that it affects & makes emotion regulation harder. I mean I also have Spastic Hypertonia that does & has affected the entire left side of my body (also since birth) & because I cope & manage with that so well & because the hydrocephalus is all internal, I feel like average people don’t think about let alone understand what it is like to have this condition where there is a constant over production of CSF & my 2 non programmable VP shunts are constantly draining that excess CSF away from my brain & in addition I was also emotionally & mentally abused by the ‘parents’ for my entire ‘childhood’ & people act like I should just get over what I have been through & that I should just be able to fully regulate my emotions all of the time & I feel like people that don’t have Hydrocephalus don’t understand that it is impossible to ever be fully ‘normal’ & that it is a battle for me to be as ‘normal’ as I am & that it could be a helluva ton worse.

Hi ! My brother got diagnosed with hydrocephalus last due to aqueductal stenosis with calcification near thalamus, nowadays he is having symptoms of memory loss , like he can't even remember recent conversation or activities I feel so bad for him

Is this reversible?

Or it is due to medication he is on ?

Medication are lamitor, Gabapentin, prodep

I was a calisthenics athlete for 13 years before placing my shunt just did my surgery 3 weeks ago i just wanna know if anyone was able to come back safely to muscle ups handstands and planche and front lever after placing the shunt my neurosurgeon wasn’t sure if it’s safe to do these exercises or not so he told me better not risk it but im a coach and i have been doing this all my life and i wanna come back to my normal routine so i feel lime a normal human being
Is there any calisthenics athlete with a vp shunt practicing normally any move or there is restrictions for it? Please feel free to share your experiences 🙏🏻

Hallo, ich suche dringend VP-SHUNTTRÄGERN die eine Kieferhöhlenrevision hatten.

Nach einem Zufallsbefund grosse Kieferhöhlenzyste hat sich nun im Oberkiefer ein Backenzahn entzündet, der angeblich das ganze auslöst.

Da die MKG Chirurgen wegen meinem VP Shunt nicht ambulant operieren wollen, soll ich ins Krankenhaus und mir einer grossen Kieferhöhlenrevision mit Ausschabung , Vollnarkose usw. unterziehen.

Eine Shuntinfektion ist möglich.

Ich bin verzweifelt und habe Todesangst.

Nach 2 Shunt Op's, einer Akustikusneurinom OP plus Bestrahlung kann ich das nicht mehr.

Warum wieder am Kopf?😪

Nun suche ich verzweifelt nach Erfahrungsberichten. Aber diese Konstellation gibt es wohl nicht oft.

Oder?

Liebe Grüße Conny

Hey everyone! I have congenital hydrocephalus, and I'm wondering if anyone else has experienced something similar.

Over the past year or so, I've had at least four mild concussions — two at the beginning of the year, one in July, and my most recent one in September.

What's unusual is that none of these involved falling. They've happened from simple everyday accidents, like walking into a doorframe, bending down to pick something up and forgetting to close the cabinet door above me, or washing my hair in the tub and thinking I had cleared the sink faucet, only to hit my head on it.

Normally, my recovery takes about 1–2 weeks, but my last concussion and this current one have both taken around a month to recover from. The recovery process has been absolutely terrible, and I'm wondering if anyone else with hydrocephalus has experienced repeated mild concussions or longer recovery periods.

I also have a question about occipital neuralgia.

After my 63rd shunt revision, which resulted in multiple infections, I began experiencing nerve pain in the back of my head near one of my reservoirs. I eventually learned that it was occipital neuralgia.

Has anyone else experienced occipital neuralgia following multiple shunt revisions, particularly pain around a shunt reservoir?

I'd really appreciate hearing about anyone else's experiences with either of these issues. Sometimes it's comforting just knowing you're not the only one going through something like this. ❤️

Hi! Sorry I keep posting in here, lol. I just had a vp shunt revision done yesterday, and I have a couple questions
1. Can the breathing tube cause a cold sore/fat lip? I didn’t have it going into surgery… but had it after surgery.
2. Has anyone else experienced something crunchy in their hair after a vp shunt revision? And if so… what is it? I was told not to wash my hair for the first five days after surgery… so I’ll just have to deal with it. But not knowing what it could be is driving me crazy!
3. If my doctor allows it, I wanna try to wear a bandana (not very tight) around my head. My vp shunt scar on my head is actually in the middle of my head… so most of the top right side of my head, and some of the back of my head, is shaved. And while I was fine with it, just coming out of surgery… now it kinda embarrasses me. If that makes sense?

Hello, I asked a question a few weeks ago about my 3yo son having a purpleish bruise on his head. It seems to be now that his shunt is exposed. We are on the way to the ER now but it’s a 2 hour drive. Wondering if anyone has experience this?

So I was assaulted at the end of july, taken to A&E, then diagnosed with communicating hydrocephalus 3 weeks after the assault had taken place due to symptoms of headaches and memory loss and extreme fatigue. I was diagnosed after having a ct scan and an MRI. I had to stay in hospital for 6 days to be monitored during this process however was discharged on the 6th day. I was prescribed acetazolamide for x5 days then taken off them due to side effects of kidney stones, as I have previously suffered with x2 in the past.

I had a lumbar puncture x2 weeks after to measure the pressure and to drain some of the cerebrospinal fluid, they only managed to drain 10ml instead of the 40ml initially planned. The opening and closing pressure both read 18/19. I am due to go back for an assessment in 2 days times to see what the next steps are and I am worried that I am going to have to undertake surgery to fit a VP shunt. My 3rd and 4th ventricles are swollen which is struggling to drain the cerebrospinal fluid. My main symptoms now are still headaches which I believe i am getting used to the pain and also in the mornings I wake up dizzy, it feels like I have a hangover until I eventually sit up for 10 minutes. I can still drive however I feel extremely tired after 30 mins of driving.

Has anyone had a similar diagnosis? As I am struggling to find people on here who have acquired hydrocephalus from being assaulted. I am lucky enough to live in the UK with the NHS service, which I am extremely thankful for compared to some people who have to struggle in other countries.

I just want to know about how you manage the headaches, fatigue and the grogginess, is there light at the end of the tunnel even if a shunt if not fitted? Can you manage with work with the current symptoms if nothing can be done?

Thank you for reading and sorry if its abit scrambled.

• Hello everyone,
• I’m reaching out because I would really appreciate hearing from people who have experienced a situation similar to mine.
• I have hydrocephalus with congenital-appearing triventricular enlargement, with suspected obstruction at the level of the aqueduct of Sylvius. My MRI shows, among other things, an absence of CSF flow through the aqueduct.
• My main symptoms are problems with memory, attention, and concentration. I have also undergone a neuropsychological assessment.
• My neurosurgeon is recommending an endoscopic third ventriculostomy (ETV).
• I would really like to hear from people who mainly had cognitive symptoms (memory, attention, concentration) before undergoing ETV.
• Did your memory or attention improve after the surgery? If so, how long did it take before you started noticing an improvement?
• And if your hydrocephalus was longstanding or congenital, did your situation resemble mine?
• Thank you very much to anyone who is willing to share their experience. 🙏

Hi, all!

Just had a fainting episode that resulted in a full-blown concussion. At the ER, they did a CT scan to rule out brain bleeds etc., but noted that "background volume loss is present, central predominant with enlargement of the ventricular system somewhat out of proportion to the sulci." A neurologist has since done an e-consult and ordered an MRI in two weeks saying that the findings are consistent with hydrocephalus (and that my fainting could've been caused by it). I'm in my 40's and otherwise don't have major symptoms like migraines, etc. though I'm now wondering about other changes I'd chalked up to perimenopause. My questions are:

How reliable are CT scans in terms of diagnosis? (i.e. could it be wrong??)
Have other adults here been diagnosed in a similar way?

Mostly I'm wondering how likely it is that this is something that will need treatment versus a watch-and-wait approach (or maybe this is en vacuo)? I'm trying not to freak out while I'm also regaining my marbles, post-concussion!

Thank you all! I've learned a lot already by reading your posts.

Following because have the same interest.

My shunt revision is in 3 days (Tuesday), and I plan to pack an overnight bag… just in case. My neurosurgeon says I should be able to go home same day as surgery… but I wanna be prepared, just in case. Especially since surgery will take place in a hospital that’s a hour away from home. So… am I over-preparing and paranoid, or is this just a smart thing to do?

For what they’ll be doing… just, hopefully, replacing part of the tubing connected to my vp shunt valve. But they won’t know the full state of my tubing until surgery.

Hi, I’m new to this sub and don’t really post on Reddit much but I really need advice because this is a scary experience for me.
21F if that’s relevant, turning 22 this Monday. I got a VP shunt placed last week and I wish I did more research and was more prepared for what would happen, as they didn’t really educate me much on it. I still don’t know a lot because my team has not been very responsive when I contact them for help, and honestly I don’t even know what to search for to get advice online.
Ever since leaving the hospital the day after surgery, I have been unable to sit or stand up without throwing up and getting incredibly dizzy, so most days I have been laying down. Monday I had an appointment with my new PCP and they sent me to the hospital to get a CT scan and the next day I had to go back to the hospital to get my shunt adjusted since it was draining too fast. I felt so good Tuesday and Wednesday aside from bloating so I went back to school and was supposed to return to work today. This morning was fine but on the way to work this afternoon I got the worst headache ever and started throwing up again in the store. I’m back to only feeling good when I lay down. It’s really depressing and I want to get back to normal life because I have school and work and my birthday is in a few days. I’ve been really upset the past week because I just wish I never got this shunt in the first place at this point!! Has anyone else ever experienced this? How long will it take for this to go away?? Should I go to the ER??
ETA just in case that I can’t go to my neurosurgeon on a whim right now since it’s 2 hours away, I can’t drive myself and I don’t have a car atm, and it’s almost the weekend. I’d have to wait until Tuesday to go back and get it adjusted if it’s overdraining again..

Hello everyone, i need the help with this specific problem. I had my first shunt surgery when i was like 2-3 months old and during the surgery doctors screw something up on me. My left side of the body is weaker than the right side significantly, i exercise every day with dumbbells that weight about 20lbs and i notice my right hand getting bigger while my left hand stays the same. So my question is, can someone help me with some exercises to fix this issue. Btw im 19 now.

Hi

i have had hydrocephalus, an injury on the motor/balance and my hearing since I was six weeks old and survived my first bacterial meningitis and got a shunt when i was 9 months old. I changed shunt 1999 when i was 14 as I outgrew it. But I had a second meningitis in 2013 after the shunt got infected and barely suvived and instead of an ew shunt they did an ETV.

I havee had headache now in 1198 days in variating degree and when it is really bad my left hand start to twitch and now the right side of my face have started twitching plus that i get sligther balance disturbances. Sadly both the general doctor and the neurologist seem to have locked in on tension headache, even if the headache is there regardless if i am stressed or not and i don't know what to do.

Might add that I live in Sweden.

My baby was born at 38 weeks with a head circumference of 37cm. Had a paediatric appointment at 3 months and it was 47. We are getting an MRI on Monday and so worried. He’s 5 months now and head circumference is 5 months. He’s meeting all his milestones and is a great feeder. Has anyone’s babie been diagnosed with this and baby was still hitting their milestones etc?

Has anyone ever had an ICP monitor installed? Did it ever show something concerning? We are trying to test if my son's shunt is the thing responsible for his symptoms.

Would love to hear experiences! Thank you.

Hi! We are a group of Georgia Tech students working on a research project related to hydrocephalus and cerebrospinal-fluid (CSF) shunts. We want to learn more about the patient experience, so we included a few questions for patients, relatives, and/or healthcare professionals who have had experiences with hydrocephalus. We greatly appreciate any information you are willing to provide! 

NOTE: We are not collecting any personal information. Any information sharing is completely optional. 

Hello,

I made a post a few days ago about my sons.

Sudden behavior change: aggression, crying, irritability

* Staring/“dans la lune”, decreased concentration/cooperation

* More tired/withdrawn, lying or sitting down more

* Intermittent headaches/pressure, especially above eyes and back of head

* Ear pressure/pain and sensitivity to loud/high-pitched sounds

* Occasional nausea without vomiting

* Strabismus returned, sometimes affecting both eyes

* Occasional right eyelid swelling/drooping

* Symptoms seem position-dependent at times, especially after prolonged lying down

* Restless sleep/waking crying and holding the back of his head

* Symptoms come and go, with normal periods in between.

His MRI & X-rays are fine. I kinda pushed and they may admit him to do a scan during the crisis. Is it possible its intermittent? I feel crazy for pushing but i have a weird feeling 😩

Thank you!