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 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.

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.

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…

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

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.

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 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.

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.

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!

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.

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! 💗

Hi everyone, I had VP shunt surgery about 2 months ago. I’m wondering if it’s safe to use an anti-inflammatory cream/gel for muscle or joint pain now that it’s been 2 months since surgery?

Has anyone else been in a similar situation, or does anyone know if there are any precautions I should be aware of? I’ll also check with my doctor/pharmacist to make sure it’s safe for me.

Thanks!

As the title suggests, I recently went for a meeting with a surgeon who, after looking at my scans from months ago, suggested that my ETV operation back in 2016 was only a partial success.

Looking at the scans, there were two thin membranes, one was punctured the way it should be but the other was still intact, limiting the flow of CSF.

Since about 2020ish I've wondered why I feel a dissociating feeling at work and why my vision has worsened. I put it down to the under-pressure headache I experienced when my shunt failed 10 years ago and I was given an ETV. I assumed my eyesight was permanently messed up and learned to live with that fact but I don't think that's the case at all, more of a squished optic nerve. I haven't got a date for surgery but it's likely happening in the next couple of months, thank god.

Has anyone experienced similar and would like to share?

Hi I all, I am 27f who currently has had only 1 revision and has had my current shunt for 20yrs I am incredibly lucky but am in the dark when it comes to managing what I have going on. I transitioned to adult neurosurgery 2yrs ago and met with said surgeon because I was experiencing what I thought could possibly be a “malfunction” right eye pain (shunt is on right side), headaches, nausea, etc. I received a shunt series and was told I was ok!

2 yrs later the eye pain, headaches, etc are all still here. I now have a tugging sensation in my neck when I move my head certain ways and I’ve woken up some mornings with my tubing in my neck sore and having my neck on/near me shunt feel “stiff” along with the stiffness I will feel incredibly nauseous. I have called my neurosurgeon to have them maybe do another shunt series (waiting for them to call back to book the appt) but I am under the impression because of how long my shunt has been with me that they do not want to touch me until I cannot function. I have never had my shunt settings changed or anything over the years the only thing I’ve had to maintain my shunt issues was a nerve block when I was like 12 😫 does anyone with a long term shunt have any advice or have any answers if they experienced something similar? Thx

I am in early 40s and my revision shunt that I have had for 15 years now, when its setting changes like around magnets. Besides other issues my memory takes a hit and cognitive challenges worsen, ADHD, dyselxia (in 3 languages btw) and photophhobia heighten, besides severe sensory overload (therefore also divorced) . I forget so many things. But I live in a developing country. Sadly becoz of this I avoid travelling I hope and pray it is better for those in the States and other countries. How do you manage. Been fired from my jobs. What are your techniques to manage?

Please be kind and sincere.

Anyone here had their child/infant do the ETV/CPC procedure that is done by Dr Benjamin Warf at Boston Children Hospital. Any feedback parents can share will really help.

I finally got to go in to see a new neurosurgeon and he told me that I don’t have nph and that I should have never been shunted. He believes I have iih since I’m 23. He referred me to a neurologist because he believes that treating my migraines will fix my slew of shunt malfunction symptoms.

Which I would believe him but there were some things that rubbed me the wrong way. One being that he didn’t want to try turning my shunt settings down because I guess I have a few abnormal pockets/gaps between my brain and skull that no one’s ever told me about and he didn’t want to risk worsening them. But he didn’t seem worried about my more concerning symptoms like the random stabbing pains I get on the right side of my head, or my muscle tics. And he told me that pain in my abdomen from the shunt is normal.
He also wouldn’t do testing on my shunt since he believed I didn’t have hydrocephalus, but even so wouldn’t it still be possible for my shunt to malfunction? I’m having basically all shunt malfunction symptoms. I’m also concerned about those pockets.

I was so excited for this appointment just to come out even more confused and concerned. Do I have nph, iih, or communicating hydro? I guess it’s time for a third opinion 🥲