Quote:
Originally Posted by Debi76
Hey, I'm looking for some advice from anyone who is shunted!! I have a 10 year old who was diagnosed with an Arachnoid cyst at the age of 2. Initially he had a CP shunt which was changed to a VP 3 years later. I'm trying to keep this short as there's just too much to go in to. He has now had over 40 ops including a cranial vault expansion (unsuccessful) and for the last 16 months the longest a shunt has worked is 4 weeks. He now has slit vents, complex hydro and a recurring cyst. For a 10 year old he is amazing but recently he has been very upset and saying he would be better dead as "he can't be fixed".....we have been home from hospital for 2 weeks and he is now showing signs of malfunction again. I desperately need to hear other peoples stories and what works doesn't work. Debi
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Debi, I have a 16 yo with a similar problem, he was young, probably 5-6 and had multiple vp shunt failures. Everytime he had one, it would imediately fail within two days, (at least we were in the hospital). Anyway, while talking to his neurosurgeon he casually mentioned the size of the tubing of the shunt coming from his ventricles to his pump. It got me thinking. I asked why the shunts were failing. He said that they were clogging. I asked if they're sized, might we be able to use a larger catheter. He had a surprised look on his face and said, "I never thought of that". Long story short, we used an adult sized catheter and haven't had problems in years with his shunt. God bless you and your son. I hope something can come of this. My son is now on the kidney transplant list as he went into kidney failure around Thanksgiving of '11. Always be your childs strongest advocate. The ones that seem to know the best sometimes get caught up in their day to day patient activities to look at the simple things.