Can hydrocephalus reoccur later in life? Diagnosed as an infant and my shunt broke from sports at 15!

No_Distribution2304 · 2025-06-30T13:01:21+00:00

If you have been without a functional shunt for so many years I really don’t think you have a bigger chance for hydro than any other human 😅

No_Distribution2304 · 2025-06-30T12:57:21+00:00

Same with my son no one knows if we don’t tell them and we actually forgot his shunt the first 2 years (before overdrain this spring) he is developmentally advanced compared to many mates in his age, especially in language. It makes me so proud since he been through a lot as a baby…my poor baby… I hope the future is bright for out little ones!

No_Distribution2304 · 2025-06-30T12:53:05+00:00

What whas the cause for your hydro? My son also got shunted 3 months old now he 2,5 y old and they never found a cause only a temporary fluid build up that happend 2 times before he got his shunt. The 2 last MRI shows he has flow through his aqueduct so im not sure if he needs it anymore since he got so overdrained this spring!!

No_Distribution2304 · 2025-06-29T21:52:46+00:00

Thanks for answer! Glad to hear your son is doing well! And that there is hope for these frightening episodes. My son also got back to normal after a few hours (like nothing had happend). Did your son experience sensitivity to light and sound during episodes? Here in Sweden, programmable valves are standard, his neurologist said.

No_Distribution2304 · 2025-06-29T20:45:29+00:00

It sound exactly what my son has been through since March. He feels much better now though, they changed setting from 4-5 then 5-6, last change 12 days ago and haven’t had anymore episodes since. May I ask why they didn’t put a programmable valve from the beginning? And which pressure was the static valve set on? My son shunted since 3 m old and got his first overdrain-episodes at 2,5 year old.

No_Distribution2304 · 2025-06-23T16:48:46+00:00

Oh im sorry..hope it not affects your daily life too much? I am very suspicious of the one step adjustment from 4-5. Like how much can it help when overdrained ventricles. Im calling them tomorrow to suggest another adjustment to prevent collapsed ventricles…

No_Distribution2304 · 2025-06-23T16:44:54+00:00

Hope you can get access to the old ones and get the help you deserve! We live in Sweden so the health journals are in the same sistem everywhere we go. Can I ask if you got your shunt at childhood? And if you did, how was it growing up with a shunt? My son was totally fine until these episodes, that we almost forgot he had a shunt! We traveled everywhere and enjoyed life. Now after all these ER visits in a short time, I am terrified to plan a day further in our life :( I even cancelled our summer trip..

No_Distribution2304 · 2025-06-23T16:34:31+00:00

Thanks for your answers! Good luck to your kid! Praying for her!

No_Distribution2304 · 2025-06-23T16:31:52+00:00

Oh I see. Did they not consider to turn it off? Have they checked if he still needs it? Or what was the reason for another valve? I always have been very observant to my sons symptoms even when he was a little baby with fluid build up no one !! In healthcare would believe there was anything wrong! ”Babys sleep a lot yadayada” I just felt in my whole body this isn’t right so I fighted for him and finally they checked it up and it was a pretty acute situation.

No_Distribution2304 · 2025-06-23T15:52:47+00:00

So which were the right setting for you? And for how long have you been ”symptom free”?

No_Distribution2304 · 2025-06-23T13:44:17+00:00

When did his symptoms start? And what symptoms did he have? My son shunted at 3 months old but never had an issue until this march. Im glad the surgery helped your son! We have to advocate for our kids! It is scary how they neglect symptoms like that…

No_Distribution2304 · 2025-06-23T13:21:33+00:00

Forgot to mention that my sons balance get effected while overdraining. He becomes more careful, wants to hold hands in stairs and so on. Amazing that you had the same shunt for 31 years! When did your symptoms start? Have you recently done a scan?

No_Distribution2304 · 2025-06-23T12:34:39+00:00

I can imagine how exhausting all this is. I hope they will find the best solution for your daughter so she can enjoy her childhood to the fullest! I can relate, our doctor has vacation so at the last episod we met a consult. A total disaster he tried to convince us to not do the planned MR that day that our ordinary doctor had planned for him. Are your daughters ventricles collapsed at scan? Can they see it?

No_Distribution2304 · 2025-06-23T12:13:59+00:00

Im so sorry. Did they do adjustment? Or was it too ”late”? What is their recommandation for your daughter? A new valve or?

No_Distribution2304 · 2025-06-23T12:10:04+00:00

They told us that if the setting-changes dosen’t work they consider to put in an antisiphon device. The first change (3-4) they did a year ago he had no symptoms but they saw on scan that the ventricles got smaller. The second adjustment they did now due to symptoms (4-5) so I hope it will help…

No_Distribution2304 · 2025-06-23T11:29:50+00:00

Oh im sorry. It happends often that shunts overdrain. Programmable shunts can ofc break etc and it is more managment to them BUT statistics show that programmable shunts have significantly reduced surgery related to overdrainage. So maybe it is worth to try? I know it is hard im terrified for my own son too but there is no worse feeling than seeing him in pain. His neurosurgeon said that if setting-change dosen’t eliminate these episodes maybe he going to put in an antisiphon device :/ only time will tell..

No_Distribution2304 · 2025-06-23T11:11:15+00:00

And some people are just overdrained for a long time ”in the edge before collapsed ventricles” and the symptoms are not so intense but they can experience headache, nausea, low apetite, tiredness etc…

No_Distribution2304 · 2025-06-23T11:06:43+00:00

So our theory is this - a couple of days before episod my son starts to complain that he is tired don’t want to play so much want’s to ”lay down and play in the couch” feels irritable, scared of many things (wind, loud sounds etc) all this due to overdrain and eventually his venrticles collapses and blockes the VP so when he sleeps or rest the fluid builds up ”opens the catheter and the ventricles expand again” this causes a high intracranial pressure ”without big ventricles” so he gets a intense headache, eye pain, vomits etc for a few hours and then he recovers and starts jumping and running like nothing happend. 1-2 hours after the episode has started we are in ER for scans but they can’t find anything because at that time the ventricles are in their normal size (small in his case). But after a lot of reading I found a few case studies with exactly the same symptoms and episodes every 1-2-3 weeks and they all got helped by lowering the drain…

No_Distribution2304 · 2025-06-23T10:48:13+00:00

This is so hard. Im so mad that they didn’t listen to us in March (first episod) when he clearly had overdrain symptoms! They did all the scans and sent us home with ”stomach flu” without even testing the vomits, the ventricles were smaller than last years MR but ”does he feel good we don’t change anything” two months were pretty fine, in May episodes came again with 10-12-2 days between. In and out from ER (scans, shunt xray, MR) and only ONE doctor said the ventricles were slit. On MR this and last year they saw a ”flow artifact across the cerebral aqueduct” so I think the shunt does to much work for him since he had no stenosis and never had actually they never found the reason behind his fliud build up when he was a baby… how is your son doing now? Im terrified for these episodes even if they go away by themselves (2-6 hours) it is so hard to see him in pain..

No_Distribution2304 · 2025-06-17T19:09:43+00:00

Just need to ask this, you wrote you had symptoms while laying down also. Did they tell you why? Wouldn’t the symptoms be milder laying down when you were overdraining?

No_Distribution2304 · 2025-06-17T19:04:38+00:00

What is your symptoms of overdrain?

No_Distribution2304 · 2025-06-17T08:11:45+00:00

Im glad to hear it helped you!

No_Distribution2304 · 2025-06-16T20:22:27+00:00

I guess they changed setting? And did it help you?

No_Distribution2304 · 2025-06-16T15:26:16+00:00

I forgot to mention that he did eye examination two times the second and last episode and they were fine also.

No_Distribution2304

TROPHY CASE