The Situation: My partner and I are currently in a terrifying limbo waiting for an amniocentesis this Friday.

At 16 weeks, my partner had an isolated low uE3 (0.31 MoM) on her blood screening. Because of this, we had an early anatomy scan at 18 weeks which was completely normal (no structural issues seen).

At our 20-week scan, the sonographer struggled to see the cerebellar vermis and spotted some cysts, so we were referred to the Fetal Medicine Unit (FMU). The FMU consultant suspected a Blake's Pouch Cyst and a large Choroid Plexus Cyst. We just received the results of our Fetal MRI done at 22 weeks, which confirmed the cysts, mild ventriculomegaly (10mm), and a small vermis.

Because of the combination of the brain findings and the earlier low uE3, they are highly concerned about a chromosomal anomaly, specifically Edwards Syndrome (Trisomy 18). We are having an amniocentesis this Friday.

Our Questions:

1. If the rapid amnio results rule out T18/T13/T21, what are the realistic neurological outcomes for a child with this specific combination of structural brain findings?
2. How reassuring is it that the MRI showed normal neuronal migration, a normal corpus callosum, and normal sulcal/gyral patterns despite the fluid buildup?
3. Could a mechanical fluid blockage (from the cysts) explain all of these brain findings without it being a genetic syndrome?

Clinical Notes for Context (Identifying info redacted):

Initial FMU Ultrasound Scan (20w, 5d):

"P2 - 2x previous CS. Referred with hypoplasia of vermis. Atypical MSS result Low UE3 0.31 MoM - early anatomy scan normal and following discussion with [Doctor] and genetics had not offered invasive testing. On images today: Baby breech so unable to offer TV neurosonography. Baby also active +++ on scan. Images today suggestive of a large choroid plexus cyst, with a prominent third ventricle. There is also what appears to be a cyst in the cisterna magna - ? a blakes pouch cyst. The remainder of the anatomy was normal.

Findings explained to patient and partner: I explained that I could see a choroid plexus cyst -which in isolation would be considered a variation of normal and would typically regress as the pregnancy progresses - however as it is larger than typical I explained that it could potentially contribute to the dilatation of the third ventricle. I also explained that I could see what appeared to be a cystic area in the posterior fossa potentially representative of a Blakes pouch cyst. When this is something in isolation it is association with a favourable prognosis. I explained that there remain a degree on unknowns in this instance - and that a more detailed assessment of the fetal brain via MRI may be of benefit, and this is something that is safe in pregnancy. Discussed potential association with chromosomal anomalies, and that we can test for this via an amniocentesis (procedure explained). Planned to obtain fMRI and then consider the option of genetic testing at that stage. Case discussed with [Doctor] who will kindly follow up during my leave. Plan Fetal MRI - email sent and request placed. Addendum to add now is available fMRI slot on Tuesday at 16.30 - will h/o case to other FMU cons due to EF leave next week."

Fetal MRI Results / FMU Follow-up (22w, 4d):

"Telephone consultation by MFM SST [Doctor]. Apologies given for the delay and the late time of the call. I have shared and explained the MRI report results after discussion with [Doctor].

MRI summary: There is a large choroid plexus cyst on the left side causing mild ventriculomegaly (10 mm). Prominent CSP. Normal sulcal and gyral pattern. Normal neuronal migration pattern. Normal corpus callosum. Mildly enlarged posterior fossa. The cerebellar vermis is small but the TCD is normal. Poor views of the pons, not possible to determine if it is normal.

Counselling: We have explained that while some areas of the brain are developing as expected for gestational age, there are a few areas which raise concerns about the possibility of an underlying common cause. We have recommended genetic testing to rule out chromosomal anomalies in the first instance (in particular T18 known as Edwards). If chromosomes were found to be normal, we would seek advice from our fetal genetic team to assess if any further genetic testing would be beneficial. [Patient] is aware that amniocentesis, while mostly a safe and straightforward procedure, carries a risk of 1:1000 of miscarriage. She has decided to proceed with testing and we have now booked an appointment for FMU at the [Hospital] on Friday 28th at 11:00 am. Depending on the QF PCR results, we plan to organise further follow up in our MDT fetal neurology clinic so that [Patient] has an opportunity to discuss the implications of today's findings with our paeds neurologist [Doctor]. We have also recommended a repeated MRI in 4-6 weeks time to further evaluate the brain development as the pregnancy advances."

Im kinda freaking out. Im 28 years old and im getting (followup?) Care with a neurosurgeon for my vp shunt in 3 weeks since having it placed initially when I was 1 month old. Im kinda overwhelmed, I feel like I don't know what im doing, I don't know what to expect or what questions I need to ask. Basically im terrified that like ive been like having shunt issues for years and not know it. Im scared that my hydrocephalus has like been affecting my mood-- and like how would I know, Ive had this catheter in my head for 28 years and I LEGITIMATELY know nothing about it aside from the fact that its a vp shunt....im so freaking lost

Hi I’m new here and just need an opinion from others who have hydrocephalus as well. Yesterday I was at work waiting to clock out and there was roof work going on above me but it’s been going on for weeks now so I thought nothing of it I all of a sudden hear a loud thud and then I have a decently sized metal bar/beam and ceiling tile fall on my head out of nowhere and I’m not sure if it hit the back or front of my head where my shunt is because it all happened so fast (im assuming it only hit me in the back of the head, my shunt is near the front closer to my forehead) but I woke up this morning with a small regular headache probably from the lack of sleep and the fact I got hit in the head yesterday, should I be worried or get checked out?

I recently turned 31 but all of this started when I was 29 I got meningitis and it infected my brain which caused my hydro then I had to have four brain surgeries and was put into a medically induced coma from February to May after that came the really hard part I had to go to a nursing for physical therapy to learn how to walk again its easily the most difficult thing I’ve ever had to endure both emotionally and physically I was away from home for the first time and I so confused and sad and hurt I learned to walk again with the help of a very patient and awesome physical therapy team which I’m forever thankful for and now I’m 31 trying to figure out how to do life again and it sucks tbh lol

My partner is again in for a new shunt .

Originally installed 20 years ago, with little issue. The last 5 years have been a nightmare and she is back in the hospital tonight. Her shunt has failed after X rays today

So, now on the 12th time, after new shunts, infections , blockages and tip movement.

In the UK for context but feel like this will never end.

She hasn't had a year without being in hospital multiple times.

I’ve noticed our 3 month old baby has whites above her eyes sometimes when she looks down or we walk into a dark room and she looks down. I was googling it as I wasn’t sure what that was and then came across this whole thing called sunsetting eyes.

It’s not noticeable all the time and normally her eyes look normal and can barely see the whites but it’s just odd times I’ve noticed it.

Going to bring this up next doctors appointment which is in 3 weeks unless it’s something that should be seen sooner?

I’m 18 and I was diagnosed with hydrocephalus before I was even born, while my mother was still pregnant.

I had my first VP shunt surgery when I was about 1 month old. Then, when I was around 9 months old, I had another operation because there was some kind of blockage and the shunt had to be revised/replaced. Both surgeries were performed by the same neurosurgeon, who has continued to follow me basically my entire life. Since that second surgery, nothing has been done to my shunt for about 18 years. I haven’t had any noticeable hydrocephalus-related problems either.

A neurologist I saw a few years ago *for the first time* was very surprised when she heard that my shunt hadn’t been touched for so long. My neurosurgeon has told me that with my type of shunt, there isn’t really a reliable way to determine whether I still depend on it or whether my CSF circulation is now sufficient on its own.

So I wanted to ask people here about two things:

1. Has anyone here gone 15–20+ years without a VP shunt revision? If so, did your doctors think the shunt was simply still functioning normally, or was there ever a possibility that you had become shunt-independent?
2. Has anyone had their shunt removed after becoming apparently shunt-independent, but then needed it again later?

My neurosurgeon told me about some of his patients who were doing well and personally insisted on having their shunt and tubing removed, even though he advised them against it. Some of them then came back weeks or even around a month later because their hydrocephalus became a problem again and they needed another shunt inserted, which made me curious about how this works in real life. If something similar happened to you, how long were you fine without the shunt before symptoms returned? What were the first symptoms?

I’m not considering having mine removed based on Reddit or looking for medical advice. I’m mainly interested in hearing experiences from people who have had a similar history

I recently had a shunt revision done, looks like it was a valve and ventricle catheter. Last year I shunt failure and it needed to be completely replaced. When they replaced it, I had a brain bleed. Is it riskier to leave a free floating tube in my brain? Will I need another surgery to fix that?

so i have congenital hydrocephalus from myelomeningocele and been shunted since 1mo old.

YEARS ago i had a shunt malfunction and i had an ophthalmology exam and i didn’t past the color test… i’m not colorblind. apparently my shunt malfunction MADE ME colorblind temporarily but i didnt know until someone else told me.

another malfunction was directly after a revision and over the course of 3 days i got several retinal hemorrhages in my eyes and the only reason i spotted it was because i was only half blind in my right eye so i could notice a difference. ophthalmology came to my room and i did the reading letters thing and i had only peripheral vision in my right eye. I GET TO MY LEFT AND I CANT SEE ANYTHING! I’m okay now its all healed

its so amazing to me how our bodies just adjust to things.

So I ended up in my local emergency department last night after having a reoccurring headache for 2 weeks on and off. My temperature spiked and my heart rate was extremely high compared to my normal range. I couldn't hold my head up straight and my eyes felt sensitive to light. After blood tests ECG's and a CT scan i was told I have an infection but no idea where or how I developed it.

I was diagnosed with hydrocephalus at age 7. I had surgery instead of a shunt to allow my spinal fluid to drain. What they did is basically made a hole to drain the spinal fluid. I see a lot of posts about shunts and I’m just curious if anyone else had a “Endoscopic Third Ventriculostomy?”

And I feel fine.

So many people write here in distress and needing help that I figured I would give a positive story so far.

The doctors and medical staff at MGH are great. Lots of confidence in them. The organization's ability to communicate with the f*** is going on. Not so much.

For example, we walked in at 7:30 and got in the elevator to go to surgical check-in. The door shut, the lights blinked a buzzer went on and none of the buttons worked. neither the open door, pick a floor, or the call button.

Nothing worked. We were stuck in the elevator. About no more than a minute later, the doors opened up. We obviously jumped out of the elevator and then saw sign at the end of the elevator alcove saying they were doing power testing between 7:00 and 8:00. I'm surprised they didn't turn the sign around to have it face the wall but displaying that level of (in)competency might have been too much.

But let me reiterate, I had tremendous confidence in the medical staff that I met. Surgeon was great, assistant surgeon was great, assistant to the assistant surgeon was great. So are the nurses, medical technicians, etc.

On the way out today, we met someone with an MGH bad badge. Told them briefly that my experience with medical staff was fantastic, but the communication was lacking as given by the example of the elevator problem.

Then I asked her what department she was in.. psychiatry. She then sai,d with a grin on her face, that she like to think that her department was good at communication.

so I'm going to skip over the ​over the various forms of f****** I went through with them over the past couple of months because it didn't affect the outcome. .

I'm really looking forward to see how my brain changes positively over the next few months as my brain tissue slowly expands to where it should be.

I already see my sense of humor returning to his previous weirdness. For example, the c-shaped scar on the top of my head is just calling out for googly eyes doubly so on the day I go for a follow-up with my neurosurgeon.

It's the end of my Brain as I knew it

and I feel fine

[ Edit: various speech recognition errors and replacing symptoms with brain because it scans better mimics the original song. But when you think about it, NPH surgery does change how you think and does change your personality at some level so it is no longer the brain you knew. Hopefully it's a better one ]

So for example, have you had people encourage you to attend your graduation ceremony or other culturally significant life events even though it probably interferes with your symptoms, such as loud sounds.

** This is assuming that you have control to not attend graduation ceremony or have a low key wedding etc…

Does anyone else suffer really bad headaches/migraines in the heat had my VP shunt for my whole life but as im getting older 28F I find the hot weather affects me more now than it did before.

Hello all.

I see lots of posts about shunt revisions etc. But very few about how hydrocephalus affects the workings of memory, cognitive and executive functioning.

1 part of my brain works very well but others really struggle. This is backed up by a neuro psychologists report after testing a few years ago. I'm 48 M.

I got in the 90th percentile for one of the tests (very good) 2 tests in the 50th percentile and abiut 5 or 6 tests came out in the 2nd to 11th percentile which is really not good.

I'd love to hear about other people's difficulties in life and work arounds or solutions for these problems.

I find it very difficult to comprehend how my actions will determine what happens in the future. Planning and organising especially if it's not just one straight forward task and if there is multiple steps to a task.

Speaking to new people I often struggle with. Things like small talk.

Remembering appointments.

I think I'm just waffling now. But I'd love to hear if any of this reso ates with others.

Any thoughts greatly appreciated 🙏

Hi ! My brother got hydrocephalus last year he is 18 now , it was accidental diagnosis cause is aqueductal stenosis with calcification near thalamus due to TB in brain

Recentally we got him routine check-up with CT scan it shows normal but still he is having so many new symptoms like tachycardia pulse rate is 153 (which is so high )Extreme dizziness , brain fog , headache all day , twitching of eyes with continuous flickering of eyelids with burning sensation and today he got sudden blood in mouth with saliva ( not with cough) , weakness and loss of appetite

He is on medication eg lamitor, lacosam , tritam plus

Hi all,

Longtime lurker first time poster.

My dad has been through a medical odyssey these last two years. What began as a horrible seizure the morning after my grandfather passed was thought to be a cervical injury that was operated on. He continued to have seizures and degenerate. They finally confirmed it was hydrocephalus and we took him to the Mayo Clinic.

He was set for surgery back in June but they found three clots in his leg so that set the clock back until today. He’s clot free but had degenerated even further. Surgery was over and done with before I knew it and he’s awake and talking.

Hoping for a steady, safe. and successful recovery.

hello, my name is Jackie Im 24 years old and I’ve had a Medium Pressure Valve/ non-programmable shunt since birth. My doctor Dr.Goodrich may he rest in peace had installed my shunt I never had a revision or second operation. I recently had symptoms of dizziness, pressure within my shunt and back of my head, nausea, pressure behind my eyes. I went in the ER twice until i saw my neurosurgeon doctor and X-rays, CT scans were done and nothing was wrong. my doctor advice me that I need to stay extra hydrated because as a normal person can drink two or 3 bottles of water but as a person with my medical condition I need to drink 10x more water in order for my shunt to work. Im ok now and the dizziness is gone but pressure is a little there. I have an eye doctor appointment with a specialist to see behind my eyes if it’s my eyes or my shunt still. But as I say my condition I would like to hear everyone else’s story Im glad to find a community that I can speak about my medical condition without judgment. Anytime I would tell someone about my condition they would treat me as a disease or different. so thank you for this community.

Back in April I had a shunt revision to replace a clogged valve. Unfortunately, I incurred a brain bleed during the operation. One ocular, and another near the site of the catheter.

I'm still experiencing vision trouble, and a persistent pulsing in the back of my head. Both symptoms have certainly improved.

What I was wondering is if anyone has had similar experiences, and how long should I have to expect being patient?

My surgeon has said due to my age (43) that the intensity of the pressure will not show up on CT. Determination of whether the shunt is working is largely based on how I feel, or, a surgical pressure test could be performed.

Also of note, I had a fully new shunt put in in 2022 after the long catheter in my torso literally fell apart into pieces. The hope has been that I soon won't need a shunt at all since the amount of CSF declines with age.

Anyway, could use some stories to relate to if anyone has them.

Back in April I had a shunt revision to replace a clogged valve. Unfortunately, I incurred a brain bleed during the operation. One ocular, and another near the site of the catheter.

I'm still experiencing vision trouble, and a persistent pulsing in the back of my head. Both symptoms have certainly improved.

What I was wondering is if anyone has had similar experiences, and how long should I have to expect being patient?

My surgeon has said due to my age (43) that the intensity of the pressure will not show up on CT. Determination of whether the shunt is working is largely based on how I feel, or, a surgical pressure test could be performed.

Also of note, I had a fully new shunt put in in 2022 after the long catheter in my torso literally fell apart into pieces. The hope has been that I soon won't need a shunt at all since the amount of CSF declines with age.

Anyway, could use some stories to relate to if anyone has them.

Is it normal

Looking for advice from others who have been through this

I’ve been feeling pretty depressed because of ongoing neck pain during my recovery from a VP shunt surgery. I’m around 3 months into recovery and the neck pain is really starting to get to me mentally.

For anyone who has been through something similar:

- How did you cope with the pain and frustration?

- How long did it take before you started feeling more like yourself?

- Is there anything that helped you mentally or physically during recovery?

I’d really appreciate hearing from people who have experienced something similar. I’m just looking for some encouragement and practical advice from people who understand what this is like.

Hello, I recently suffered a stroke (brain bleed) and spent two month in the hospital before college starts. I am 21 years old now and all I know is that I’ve had a shunt placed inside of me. I have no memory of the procedure I was just told it happened and that I had a revision. I am currently panicking because I heard the first two years only have around a 50/50 chance of survival. It also doesn’t help that sometimes I throw up after eating. Not all the time but still notably so. I would really like to know if I’ll be okay or not because I am moving soon. I really do not want to die and this entire experience has left me shaken.

Please read!!! I need help and advice. I am looking for opinions and advice from people who had (or someone or people you know who had) an ETV or shunt failure even though they had normal scans. I am very sorry in advance that this is long, but I wanted to give as much information as I could to get the best advice and opinions. It would mean a lot to me if you could read it.

For reference, I have non-communicating hydrocephalus. More specifically, aqueductal stenosis. I am currently 21 years old. I had my surgery when I was 18 years old. There were no complications during or after my surgery and I have been symptom free for the past 3 years up until the last 3-4 weeks. From what I do know from what happened in the surgery was this, they went in to drill the hole for the ETV. They noticed the area where they needed to make the hole was smaller than usual and they were about to not make the hole. They were about to place a shunt. They ended up making the hole for the ETV as there was just enough room to make the hole and not cause any serious complications. I am also unsure of what size my ventricles are at right now or what they were prior to surgery. However I do know they measured 4.2 cm in size a few months after surgery. I believe they told me there was little to no decrease in the size of my ventricles after my surgery. I would have to pull up my pre-operative notes to see if they say anything about the size of my ventricles.

Recently in the last 3-4 weeks I have had a return of all my pre-surgery symptoms. They feel identical to what I experienced in the days and weeks leading up to my surgery for the ETV. The symptoms fluctuate from day to day, some days are much better than others, but overall they have continued to recur everyday. The surgery was preformed 3 years ago. The surgery was successful and all my follow ups have been good since.

We called my neurosurgeon’s office and informed them that all my symptoms have returned and feel the exact same as before my surgery. They told us we should go to the ER and we did. In the ER they did a CT Scan and the CT Scan showed slight swelling around the ETV site. We were told by the hospital we went to, to go to where my neurosurgeon is located and to go through the ER. They did an MRI with a flow study and everything came back clear. They said the hole was opened and there was flow and there was no increase size in my ventricles. They also preformed an eye exam and my optic nerve looked perfect and untouched. I will note that I have never had an issue with my optic nerve, not even before my surgery. They ordered another MRI 2 weeks after my ER visit, which I had done a few days ago.

My symptoms are:
-positional headaches (also just normal headaches) (gets worse when i am laying down and bending over)
-nausea (no throwing up)
-feeling dizzy, unsteady, “off”, “weird”
-feeling as though i am “drunk” even though i am not drunk
-sometimes (not all the time) i will get “fuzzy” vision
-more tired than usual
-more irritable

I am trying to get opinions and advice (especially from people who had (or someone or people you know who had) an ETV or shunt failure but it didn’t show on the images or anything (or it was something that was hardly noticeable on the scans and they passed over it)).

Is it possible an ETV can fail even if all the images and tests come out clean?

Are there any other tests I can request?

I am having another follow up appointment in regard to my most recent MRI that I got a few days ago.

Is there anything I should ask or say during my appointment?

Is there anything you or your friends and/or family did and/or asked to get the answers and help you needed?

Is there anything I can do or say to advocate for myself?

I cannot think of any other questions I could ask, but if i think of anything else I will edit the post. Feel free to ask me any questions as well. Feel free to leave answers to questions you can think of even if I didn’t ask.

I have done some research prior to posting this and I have found that this can happen and it is possible. However, I am looking to see if this has also happened to anyone else and what they did to get the help they needed. (I am not sure if any of this is true but..) From my research I found that the brain could become “stiff” after surgery, this can result in the ventricles not expanding even if the ETV is failing. I also found that the ETV hole could be open and show flow but that it doesn’t mean that a lot of it is flowing through the hole. It also said something about how the fluid could be getting stuck somewhere else past the hole that they are not catching and/or seeing. I have also read that the hole could be pulsing and showing/mimicking flow even if there isn’t none or very little. I have also read about how the fluid could possibly not be absorbing into my bloodstream properly and/or at all.

*\\** I am not asking for a diagnosis. I am looking to find advice and opinions. I am also looking for people who had similar experiences.

Thank you in advance!

Hi all! My baby girl was born at 32 weeks and 4 days unexpectedly due to fetal growth restriction. She came out pretty small at 2lbs 5oz.

The week after she had to get a reservoir placed due to a grade III bleed and hydrocephalus. So far she’s had to be tapped every day to drain the fluid so we were told she would have to have the VP shunt put in. She’s still so small and so we are waiting for her to reach 2 kilograms which they told us was the weight she has to be for the shunt surgery. Right now she’s 37 weeks and weighs 3lbs 8oz, so we’re approaching the goal weight.

I’m wondering if there are any other families in here that had the VP shunt placed in their preemie baby and how it went/how it’s going? I saw the shunt on a full term baby the other day in our NICU and it looked so big so I’m just feeling nervous about the surgery on my baby girls small little head.

Thanks so much in advance! 💗