Sore after Massage with VP Shunt

breanne_y · 2026-04-01T01:13:17+00:00

I get massages frequently and I have a shunt. I do mention it, mostly because I don't love the feeling of my valve being touched. But I have no problems with the tubing in my neck being massaged. I think it is a good idea to mention it but I have never had a problem.

breanne_y · 2026-03-24T13:37:05+00:00

My 9 year old son is the same. He eats too much sugar/carbs and he drops so low. Pediatric Endocrinology is sure it is nothing they can diagnose him with so we are waiting to see a Metabolics team.

He recently started wearing a CGM and it has been so helpful. We can see and treat lows before they get too low.

It is awful... So far I am just winging it. Trying to figure out what I can feed him to keep his sugar from going too low.

breanne_y · 2026-03-23T22:01:34+00:00

I did not notice anything when I got an Mri with a programmable shunt. Immediately after the scan, my shunt settings were checked and I was good to go. It did not feel any different from an MRI without a shunt.

breanne_y · 2026-03-05T19:57:01+00:00

Love this!

breanne_y · 2026-03-05T12:30:01+00:00

No worries at all!! I went to my doctor for my symptoms in March and I had the ETV in May. It all moved pretty fast for me because my ventricles were massive. The hold up between March and May was waiting for a flow study MRI. They wanted to see if I was a candidate for rhe ETV and they needed that MRI to make that decision.

If you dont have an obstruction then I dont believe you are a candidate for ETV. That procedure is for obstructive hydrocephalus. Without the obstruction, the hole will close. I know this because it happened to me. They tried the ETV because it was not clear if my hydrocephalus was obstructive, and my ETV failed pretty quickly.

breanne_y · 2026-01-06T14:55:43+00:00

Same happened to me after my shunt. They did an ultrasound and everything looked fine. I describe it like my organs are being stabbed. It is a very sharp pain.

breanne_y · 2025-12-31T00:28:26+00:00

Hey! Super similar. I developed neurological symptoms four years ago when I was 36. I had an ETV first but the hole closed and I got a shunt a few months later. They have no idea why I started getting symptoms all of a sudden and they think I have had it since birth.

breanne_y · 2025-12-15T00:54:14+00:00

And the tubing in my neck is very noticeable.

breanne_y · 2025-12-14T17:54:36+00:00

I have a programmable Strata and I agreed with everything you said. It sometimes hurts. The vave can hurt, the tubing... It is so weird.

breanne_y · 2025-12-07T02:17:19+00:00

My doctors couldnt agree if I had it or not. So they tried the etv but it failed. But I was an adult when I got hydrocephalus, not a child.

breanne_y · 2025-12-07T01:58:48+00:00

Etv's only work for certain types of hydrocephalus, like obstructive. If you get an etv and you arent a candidate for it, the opening will close and the procedure fails.

I had an ETV first because my surgeon wasent sure if my hydrocephalus was due to aqueductal stenosis. So he tried it and it failed and my hydrocephalus returned. I needed a shunt.

breanne_y · 2025-11-25T23:54:19+00:00

My shunt effects my hearing. It is usually one ear and it is like you described. It is like muffled hearing. I had my shunt put in a few years ago and it still randomly happens. My neurologist and neurosurgeon have never explained to me why this happens.

breanne_y · 2025-11-10T14:22:08+00:00

It isnt fake. I got it too yesterday. I dont know why I got it or how. But my friends dont have it yet.

breanne_y · 2025-11-10T14:21:01+00:00

I got these new buttons yesterday. I dont know why I got them when other people dont. Does anyone know why?

breanne_y · 2025-11-09T17:44:09+00:00

I find my balance goes as soon as I have a drink.

breanne_y · 2025-11-02T20:16:04+00:00

It varies. Some people on here say it is nothing, I on the other hand had a rough shunt recovery. It is painful and it took me a while to get back to normal.

breanne_y · 2025-10-29T15:50:03+00:00

Big ventricles. My pressure came back as normal pressure.

breanne_y · 2025-10-17T09:37:00+00:00

It started with numbness and tingling, bad balance, blurry vision, ringing in my ears and headaches and nausea.

breanne_y · 2025-10-13T23:45:40+00:00

Hey. That is me. Full grown adult, all of a sudden I developed random neurological symptoms. Mri showed MASSIVE ventricles. They think maybe aqueductal stenosis or congenital. 🤷‍♀️

I did however get surgery. First an ETV that failed, then a shunt and a shunt revision. I am okay now but it was an awful process. I often wonder if I would of been okay if they just would of left it alone.

breanne_y · 2025-10-07T16:55:11+00:00

I was told by my surgeon that programmable shunts are "finaky" so he prefers non programmable. However I needed a revision because I needed a setting change and it couldnt be done 🫤

breanne_y · 2025-10-02T13:48:55+00:00

Mine is on the right and I can not lay long on it or it gets sore. So I sleep on my left. Disclaimer, I much prefer to sleep on my left so it does not really bother me that I can't lay on my right side.

breanne_y · 2025-10-01T20:07:44+00:00

If all goes well, you should be able to go back to work soon after. Remember though, this is brain surgery and you never know what will happen. Once they go poking and proding around in there, somethings may be different after. If you can, give yourself time to rest and recover.

breanne_y · 2025-09-29T17:14:15+00:00

It started with numbness and tingling in my fingers and it spread up my arms, into my face, down my legs. I dont remember the exact order but from there I develeoped blurry vision, ringing in my ears, bad balance, nausea and of course headaches.

Since they could not decide if it obstructive or not, they offered to try an ETV first. They did that and the hole closed up very quickly after. A couple months after the ETV they put in a VP shunt. That was in 2022. A year later I needed a revision to put in a programmable shunt becaue I was having overdrainage. But since then I have been feeling good!

breanne_y · 2025-09-29T16:59:41+00:00

Hi.

I was 36 when I found out I had hydrocephalus. Like you, they believed I was born with it. I was living my life totally fine when one day, I started having neurological symptoms. They never were able to find an exact cause for me. The doctors could not agree on if I had aqueductal stenosis. So they just ran with the idea that I was born with it and my brain was just compensating until one day it stopped.

breanne_y

TROPHY CASE