What are the routine checkups and tests post-shunt?

[JimH3000]

My son is an 18 year old Type I Chiari with a VP shunt installed when he was 9 months old. No serious issues in the last 15+ years but we want to be cautious and preventative, especially now that he needs to be responsible for his own care. His neurosurgeon won't see him unless/until there is a problem and nobody else really understands it enough. What are the routine checkups and testing he should follow? Should he see a NS or NL on a regular basis? Help!

Thanks!

[The_beat_goes_on]

I would be shocked if his shunt was still functioning.  It could be that he outgrew his need for one if he doesn't have any issues.  At the very least he should have a shunt series done (just xrays of the shunt and tubing tract) ... and I think chiari needs to be followed too.  I see all my doctors at least once a year for routine checks ... but these things (shunts and chiari) require periodic scans.  Only your neurologist or neurosurgeon can tell you how often, depending on your situation.

[shelly0513]

Hey, I was born with hydrocephalus and 28 years later have never had any problems and still have my original VP shunt from when I was 7 days old. I agree with everything Selma suggested. I would advocate for post operative MRI scans and shunt series after the decompression surgery at 6 months and again at 1 year, even if he feels fine, to see if he has a new ventricle baseline.
I had the chiari decompression surgery 2 years ago and have noticed some new symptoms that I hadn't experienced before so I am in contact with my NS about them, and my eye prescription has changed 3 times since the surgery due to ICP changes. Always be you own advocate. If something is not quite right get it looked at.

[selmaS]

  Hi and welcome to the Chiari forum.

WOW 15 yrs and no issues? That is fantastic !

Since he has had a shunt for such a long time with no issues, it is possible that he has experienced a slow onset of symptoms and does not consider them symptoms...when you have a condition you are born with, it is hard to know what is a symptom since you always feel that way....so, to say he should be checked when he has symptoms can be a difficult

But he should keep a journal and record all pains and or issues he may have after certain events to see if there is a pattern that could warrent a MRI to see how he is doing.

Is his shunt programmable? Does he know to avoid certain electronic devices as they can interfere with the shunt? (ie- Ipads and other tablets)

Does his surgeon still practice?....Most will not see him unless there is an issue....

He may want to have his eyes checked on a regular basis....and a neuro optho check is a good one...since those with excess CSF tend to have issues with vision and the optic nerve.

So, he never had surgery for the Chiari..just a shunt?