hydo gone W/ aquired Chiari type1 by lumbar shunt

[GenaLF]

Disappeared Hydrocephalus W/ aquired Chiari type 1 by lumbar shunt. What to do?

My 11 year old son was diagnosed with Hydrocephalus (arachnoid cyst) at 1 yr. He has had 14 revisions. The last one they decided to place a lumar shunt in. He has not malfunctioned since. We moved, he was not symptomatic, but wanted to establish a neurosurgeon just incase. He ordered a MRI. He diagnosed a Brain Chiari type1, which he was not symptomatic. he told us not to worry. 2 years later he became symptomatic. we got am MRI and they noticed he doesn't have hydrocephalus anymore. My concern is if he doesn't have Hydrocephalus and were told his lubar shunt caused it. He wasnt syptomatic in the begining and is now. Why would they want to leave his unneeded shunt in that caused and could probably worsen his quality of life. Please advise me. I am concerned and worried because they won't answer my questions nor do they care to do anything till he i more symtomatic. I don't want to wait till its to late. Maybe we could stop the Chiari symptoms from worsening by removing the cause. Again I don't know what to do. They wont tell nor want to do anything. Please advise?

[GenaLF]

Thank you for sharing. We are waiting for a referal to a neurologist, being the neurosurgeon did not answer our questions, maybe cause he is a surgeon. I used to live in Mi. We only ever delt with the surgeons. I am learning things are done differently in KS, maybe questions answered at neurologists. I guess I will find out. Hopefully sooner than later. It is an emotionally painful wait. I like to live my life with know regrets. I look at situations seeing the ending at the beginning to hopefully better my desision making, especially with my children. As we all love them so. I will keep you all posted. Thanks again, Gena

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur experience and I hope u plan on sticking around the forum : )

  "selma"

[selmaS]

  Hi and welcome to the Chiari forum.

I am glad to see u came over to the forum...we do have a list of chiari drs...u do need to research all the drs, but it does give u a place to start. The list is not meant as a referral...and it is a list of the members drs that they have gone to....

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

[chrisking]

with my experience having a vp shunt ive had mine for 12 yrs with no problems after 5 revisions, ive had a decompression surgery for arnold chiari and ive asked if the decompression surgery starts to work to release the fluisd will i need the shunt still. Ive been told they will not remove my shunt in either case because it is too dangerous and could cause bleeding and hemmorraging, in ur case tho i am not quite sure why i apologize butif it is causing his problems then i would get a second opinion...