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 🙏
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.
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! 💗
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 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 🥲
My Boy was born with a head circumference of 50 percentile and now at 17 weeks it is in the 90+ percentile. His pediatrician said it's fine, but I of course am worried something is being overlooked.
He does have a very big head as does his father, but my worry is that it jumped percentiles quite quickly. I've also now noticed some veins and the gap in the fontanelle which has me extra worried about things like Hydrocephalus.
He is pretty good milestone wise except that he still absolutely hates tummy time and has learned to roll just to avoid it.
I just wanted to know if anyone had a similar situation and it turned out to be nothing/okay...
Surly this isn't a big deal. Lots of people have hydrocephalus and must have mortgage insurance? I'm in BC canada
Hi all. I am looking for an all-day fitness and sleep wearable tracker for my husband. I've been thinking about going with the fitbit inspire 3. Personally, I had a few fitbits and enjoyed them. However, given the concern about the programmable shunt, my husband is hesitant to use it overnight. Yet that's a health metric he wants to track as well as general fitness. Any suggestions on wearable that would work?
My brother(24yrs) had hydrocephalus as a child and he had multiple surgeries to help correct it, but ever since he recovered he hasn't been himself. He's usually jovial and friendly but he has become the exact opposite. I don't know if it is because he spent a lot of time in the hospital and away from his peers. The part that affects him the most is that he has not been able to learn well, he used to be very bright student before the whole episode. He has written the school cert exams 3 times now and it is really depressing him.
On the good side, he's able to learn and remember songs perfectly when he listens to it and he's also organized with his property and keeps track of routine. We just don't know how to help him in terms of social behavior and academia. How do you think we can help him?
Does anyone have experience with a feeling in the eyes—as if they are constantly trying to focus?
My husband recently had his shunt replaced, switching from a non-programmable GAV to an programmable M. Blue model.
This was his third surgery in nine weeks, and they performed various procedures each time (replacing the valve twice, a section of tubing, and the reservoir; they also attempted an ETV).
So we don't know whether it's just a matter of getting used to things and adjusting, or if something still isn't quite right.
Not asking in bad faith or intention, I was just recently learned of this condition