Very weird occurance...

[misty]

I have a shunt, but I haven't needed it and it hasn't been functional since I was a little girl. I haven't paid attention to it or messed with it in several years, I think. Recently I had an itch on my head beside it and realized it's not one continuous tube anymore. I think its in pieces, or has actually sunk into my head or something. I let my mom, who is a nurse in a rehab, spinal cord, brain injury clinic, feel it and she said it feels broken, but as long as I don't have symptoms I'm ok. Has this ever happened to anyone else?

[Summer25]

Mine has completely come out of place. It first happened when I was about 10. Doctor said I probably didn't even need it anymore. 3 months later I was in the ER with a malfunction. It now seems to be in the same place it was when it came out the first time. The "bulb" is now on the side of my head when it used to be at the top. It has been like this for years and no symptoms. When I was 12 I had a shunt infection and ended up with several new shunt bulbs. During that time I also had to have several other surgeries to get all of the tubing out because when they tried to get it out, it just fell apart. So, it being broken is a possibility. I wouldn't worry if it isn't causing any symptoms.

[misty]

I had my Dr's nurse check it out and she said it is either broken or just rotted from being inside me for 26 years, but there's no harm as long as I'm feeling fine.

[Belkis Concepcion]

Mine has completely come out of place. It first happened when I was about 10. Doctor said I probably didn't even need it anymore. 3 months later I was in the ER with a malfunction. It now seems to be in the same place it was when it came out the first time. The "bulb" is now on the side of my head when it used to be at the top. It has been like this for years and no symptoms. When I was 12 I had a shunt infection and ended up with several new shunt bulbs. During that time I also had to have several other surgeries to get all of the tubing out because when they tried to get it out, it just fell apart. So, it being broken is a possibility. I wouldn't worry if it isn't causing any symptoms.
Hi, my daughter is 13 and her shunt is not functioning any more. Dr said it has not been for a while but it wont be removed or replaced unless it causes problems or discomfort. She has been having headaches once in a while which can be caused by eye's seeing problems and an appointment has been scheduled for Sat to check her eyes. She's still having the same shunt that was implanted at birth and never had any problem due to malfunction.

[kali]

about 3 months ago we noticed some swelling and softness around my sons eyes and forehead and around the area of the shunt. when we touched the area of the shunt it felt like the shunt was in two pieces and completely in a different place. needless to say we got really scared. We noticed this all late at night, than the next day all the swelling was gone. we were told that the shunt possibly became disconnected or broke. (its the same shunt since birth and he is 11 years old now) there has been no new symptons or swellings since that day, so the doctors said to wait and see, becasue theres a possiblitiy he doesnt need the shunt anymore. has this happened to anyone before?

[HelenCate]

I had a surgery when I was 8 (I think) because I had actually managed to damage the shunt tubing somehow and I was getting definate symptoms. After that episode, I was a little obsessed with checking the tubing after I thought I'd been a little rough and one time actually did think I had done it again (but no symptoms), even had the gp check it out (manually) and agree that it felt 'broken' so I had about a months stress waiting for a neuro appointment just to be told after an xray that there was no problem whatsoever. Lumps and bumps and ridging can be just tissue/scarring and nothing to worry about. My last revision was just before I turned 13 so that means I just had 27 years troublefree with a (now) non-functioning shunt that just sits there.

[kali]

so it is possible that my sons shunt is not needed anymore? he has no symptons, and is just his normal self.....smile....he still drives me up a wall.....smiles

[Summer25]

so it is possible that my sons shunt is not needed anymore? he has no symptons, and is just his normal self.....smile....he still drives me up a wall.....smiles

Basically it just means that the shunt has been in there for so long that the doctor doesn't think it is needed. However, at any point in life it can be needed again. It could also mean that where ever it broke it is just draining into that area and that is enough for it to still work. I was told the same thing at about 10. However, months later I was having shunt malfuntion symptoms. So it just depends.

[kali]

thanks summer25, thats really helpful. I didnt realize that. and it makes a lot of sense. I am constantly watching my son for any symptons ,it will be 4 months this week since the swelling took place. I just pray everything is ok and stays this way.....thanks!

[Jwm]

The year before last, I was experiencing Shunt Problems, So my mom drove to the Doctor, They did the routine tests, still never showed anything. So finally they Decided to instert the dye. IT did not move. They realized the shunt tube had broken into peices, and Calcium was building up around it. so we waited till the next morning (it was around 11 at night after all the tests.) They went in and added another tube and just left the other there, they said for the to try and remove it , there would need to be a scar going down my neck. (VP Shunt). but this new one has been functioning fine since.

[bcain]

Yes they probably cannot remove it because it has broken down into pieces. To retrieve the whole thing would involve more cutting than is useful. They would probably only retrieve a piece if it were to cause you a problem or symptoms such as local infection or such. Otherwise just better to leave alone.

[LillyPie]

About 4 months afters Lillys 1st shunt placement I noticed a gradual swelling around the shunt valve... I called the neurosurgeon man times and they kept saying that some swelling is normal. She never had fever, vomiting or any of the classic syptoms so they never wanted to see her. I finaly got fed up when the swelling was sticking out about an inch and a half and seemed to be radiating down her neck and demanded that they see her. Of course when they saw her they apologized and did a shunt revision the next day. The bottom part of the shunt that goes into her abdomen became obstucted and caused pressure on the tubing in her brain and that pressure pushed the tubing in her head out of the hole they (I'm assuming drilled) made for the tube, so the CSF was coming out of the side of her head where the tube was supposed to be.. I think of it like a firehose thats on full blast and moves around on its own, well hers moved completely out of place and came out!!! So the hole made for the tube was actually the reason why she didnt show shunt malfunctions symptoms and why there was so much swelling.. it was actually all the CSF building up in that spot and there was no pressure on her brain.... So I know first had that the CSF can accumulate in other place and cause no syptoms...

P.S. I have pic posted of the malfuntion ... its the one where my husband is holding her while he is sitting down.. if you look closely you can see the fluid at the back of her head.. she was so small then!!!