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

Hi Debi, and welcome to the community! Here are a couple of forums where you may find some help:

http://neurotalk.psychcentral.com/forum14.html

http://neurotalk.psychcentral.com/forum2.html


I glanced through and saw some posts that I think will interest you. Hang in there--some days it's a little slower than others here, but someone will be along soon who is more knowledgable than I am!

I am so sorry that such a medical problem came to your family. I am glad you found this site Debi, there are alot of compassionate folks here. I do know what the condition is that your child has, but not much in detail. I have a friend on site named SDFencer, who knows one of the best surgeons for brain conditions. His surgeon wrote a book, and teaches in Arizona I believe. Please do contact SDFencer. He may have some advise for you. Keep in touch with Neruo Talk. There will be people here that can help direct you in this time of need. I will pray for your child too. I came here in a crisis of my own two years ago, and never left. such was the company I found here. Please know, you are not alone. I know what it is to be a parent of a child who has medical needs. My daughter was such a child. I care. ginnie

Debi,

Hello and welcome each of you to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you so much....i will definitely contact SDFencer....any information i can get my hands on will be greatly appreciated. Thank you for taking the time to reply

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.

Hey Debi,
I have a 15 year old daughter who has been through a lot of the same of what your 10 year old is dealing with. *edit*
Hang in there and keep searching for answers. It can be very frustrating at times.

MB