[marcelli]

My 21 year old son received his first ventriculoperitoneal shunt at 4 days old. He had a few revisions over the years, but it functioned quite well until last August. There was so much scar tissue in his abdomen that after 2 back to back revisions in August, we went to a programmable ventriculopleural shunt in October. It was reprogrammed in April, but he is still having a lot of headaches, and his NS is considering a switch to a ventriculoatrial shunt. I am not crazy about the whole "let's route it to his heart" thing, but I don't want him having headaches every time he laughs or coughs, either. Any thoughts on changing? Good/bad experiences? Higher risks associated with the VA shunt? Thanks! ~Marla

[OldBaldGuy]

Originally Posted by marcelli

My 21 year old son received his first ventriculoperitoneal shunt at 4 days old. He had a few revisions over the years, but it functioned quite well until last August. There was so much scar tissue in his abdomen that after 2 back to back revisions in August, we went to a programmable ventriculopleural shunt in October. It was reprogrammed in April, but he is still having a lot of headaches, and his NS is considering a switch to a ventriculoatrial shunt. I am not crazy about the whole "let's route it to his heart" thing, but I don't want him having headaches every time he laughs or coughs, either. Any thoughts on changing? Good/bad experiences? Higher risks associated with the VA shunt? Thanks! ~Marla

When I was one month old, my original neurosurgeon placed a VA shunt. It worked swimmingly until I was 16. He then replaced it with another VA shunt. That worked for another 12 yrs. My next neurosurgeon placed a VP shunt and redid the valve (because it was the wrong valve he originally placed, two weeks later). That shunt lasted 2 yrs. I had shunt revisions every yr for 10 yrs, due to one issue or another. My last revision was 2007.

VA shunts are safe. They don't go *directly* into the heart. The tubing connects up to the Superior Vena Cava. VP Shunts are just another way to place the shunt tubing, that has become popular since the late '70's and early '80's.

You son could be dealing with an issue that happens after numerous shunt revisions called "Slit Ventricle Syndrome" or SVS. The setting of his shunt valve may be incorrect, for his current condition. I have dealt with SVS for the last 20+ yrs. It's a drag, but one gets use to what to do to make oneself comfortable.

Good Luck.

[pedalpusher62]

My 14 year old son had a conversion from a VP shunt to a VA shunt about a month ago. He continues to have headaches. Can you tell me the things you have done to "get used to doing what you have to do to make yourself comfortable"??

He is taking Topamax which really does nothing to help with his headaches. Is there a medication you take? Have the headaches ever gotten so bad that you throw up or have vision problems? What do your doctors say about the chronic headaches?

Thanks so much for your help.

Originally Posted by OldBaldGuy

When I was one month old, my original neurosurgeon placed a VA shunt. It worked swimmingly until I was 16. He then replaced it with another VA shunt. That worked for another 12 yrs. My next neurosurgeon placed a VP shunt and redid the valve (because it was the wrong valve he originally placed, two weeks later). That shunt lasted 2 yrs. I had shunt revisions every yr for 10 yrs, due to one issue or another. My last revision was 2007.

VA shunts are safe. They don't go *directly* into the heart. The tubing connects up to the Superior Vena Cava. VP Shunts are just another way to place the shunt tubing, that has become popular since the late '70's and early '80's.

You son could be dealing with an issue that happens after numerous shunt revisions called "Slit Ventricle Syndrome" or SVS. The setting of his shunt valve may be incorrect, for his current condition. I have dealt with SVS for the last 20+ yrs. It's a drag, but one gets use to what to do to make oneself comfortable.

Good Luck.

[sheilasrite1]

Originally Posted by pedalpusher62

My 14 year old son had a conversion from a VP shunt to a VA shunt about a month ago. He continues to have headaches. Can you tell me the things you have done to "get used to doing what you have to do to make yourself comfortable"??

He is taking Topamax which really does nothing to help with his headaches. Is there a medication you take? Have the headaches ever gotten so bad that you throw up or have vision problems? What do your doctors say about the chronic headaches?

Thanks so much for your help.

My daughter is 31 and too was taking topamax when she had her VP shunt. Got that revised abt 1 1/2 yrs to a VA shunt. I myself weaned her off the topamax because it didn't do any good anyway. Talk to your doc abt that. Took her to the ER 4 days ago. Had a ct scan done cause of sharp pains, gagging, eyes not focused but shunt is working good. They recommended I get another neurosurgeon to follow up ev other month. She had a UTI (which she has had since birth but flares up 1x a yr), gave her antibiotics, Hydrocodone for pain in her head. I don't know what other disabilities he has but my daughter has no bowel or bladder control. I give her Immodium to not have "accidents" and if she doesn't go for a cpl of days it gives her headaches too. Gonna try another way to regulate her. Good luck. We learn after yrs of this to do our own remedies sometimes at home. Cause what works for one might not work for another. Docs and neurosurgeons have a standard way of doing things. We learn to work around that to make our kids comfortable.