programmable shunts...

[leigh828]

Greyson has had a programmable shunt since he was 3 weeks old and we have never had any issues (he is now 14 months). I was just wondering how careful others were around speakers and other magnetic things? Do you let your child (I'm assuming there aren't many adults with programmable ones) use headphones? What about toys with speakers? Just wondering! Thanks!!

[Summer25]

When my doctor mentioned putting one in, all he said was that an MRI would be the only thing that would bother the setting. I haven't had the surgery to possibly switch over though. If having issues with other things is the case, then I will not have a programmable one placed.

[Jwm]

I have had a VP (not programmable) shunt since birth, I am hesitant to even try a Programmable since I have heard, that magnets can offset them.

Just my 2 cents. :P

[leigh828]

Thanks for the replys. Our neuro wants us to be really cautious with speakers and magnets. No headphones, no cellphones...etc. I saw a picture of another little boy that I know has a programmable shunt listening to an I POD with headphones, and I was just wondering how strict other neuros are about them. Just curious. :)

Summer, if you aren't having problems with the type of shunt that you have now...I would stick with it. This no speaker/magnet thing is a bigger pain then I thought it would be. But Like I said, we may be overly cautious. My son has had one MRI and that did adjust the setting but it was a piece of cake to set it back.

[LillyPie]

I was told by Lillys neurosurg that cell phones shouldnt be strong enough to affect her shunt but they have to me to keep her away from strong magnets. IDK, I have always let Lilly talk on my cell phone. This is what I learned recently when Lillys shunt flow was off. The Magnet is what they use to be able to adjust the "flow levels" of the shunt, Lillys flow was at the highest level possible and is was not where they had it set at. They did a CT scan and were able to see that her ventricles were too small because the shunt was draining to much CSF. So they adjusted the flow right away before we left that day. So I am thinking that the only way it could have adjusted was by something magnetic.. cell phones... maybe, because I KNOW that I dont keep any magnets around. So she doesnt really talk on the cell anymore because I cant think of what else it could have been. But one of my friends whos son has hydrocephalus w/out SB was told by her Neurosurg "no cell phones.." I guess just to be safe.

[Papillon]

Since I have a NON-programmable shunt, I am very curious to read about the programmable variety - not sure I'd want one if I was given the option sometime in the future, though. What happens if you're sitting next to someone on the train or whatever who is using their mobile/cell phone? Surely this cannot affect the shunt's function?! It would be WAY too problematic since most of us seem to have mobiles these days - and don't other everyday things have magnets in them, too? I'm sure there's a few things we use every day that do have them in them even though we don't realize.

[XoBLoNDiE85]

WoW! i didnt know about the cell phones...Hannh talks on it at times...oops. I will have to stop that, i was never told to keep her away nor have had issues because of it but to be on the safe side i will keep it away!

[leigh828]

I'm glad to know that Hannah has never had an issue with the cell phone. I think that our neuro has us overly cautious about some things...it's good to know! :) I pray that Grey's shunt will continue to work great, but if not, and he needs a revision, I'm hoping that they will put in a non-programmable one.

When he first had it placed, out neuro was saying how great it is if you need to adjust the setting...we've never had to adjust it. Does that mean that this setting will work for him forever? Or could there be a possiblilty that as he grows he would need a higher/lower setting?

[XoBLoNDiE85]

See I REALLY like the programmable shunt. We have had to use it alot her first year...it did end in a revision but bought us some time. But i don't know any different either so idk....

[GraciesMom]

after 2 shunt revisions for my daughter,we discussed the programmable shunts with her surgeon.He said that the only things to watch were airport security and like security devices (sports complex/concert centers)and of course,MRI.He told us that there wasnt much out there that would even touch the shunt adjustment.(No everyday items/objects to be avoided)Our daughter is on her 3rd valve in her 5 mos life,if any more valve issues arrise she is getting the programmable valve.Sounds like you're child's surgeon runs on the safe side,and there nothing wrong with that.

[leigh828]

Thanks for the info!! We just went on vacation and our neuro said that airport security was just fine. hahaha I just love how ever doctor has a different opinion!!! :) I'm hoping that the third time is the charm for your daughter and that she will never need the programmable one! :)