how are u or your kids doing a year after decompression?

[samsam5mom]

OK so I am on here again....my son had decompression surgury Dec 29 2014. His headaches are back full force and have been for about a month. He was doing great. Have had 2 mri since surgury the last one in August said his cerebellum and brain stem were sagging causing traction....is this normal and ok? He is only 6 years old. Why would it be sagging? My biggest fear is....did they make TOO much room when doing surgury? Do I need to find a new Dr for him? They told me to keep him hydrated and that should add enough cushion....I don't think it's working??  Like I said his head aches are back and they are bad. Any comments are welcome and I would love to hear what u think.

[samsam5mom]

Thank u selma. It will not let me private message u...assuming because I am on smart phone. When I get to a computer I will message u for sure. Do u know if Dr Nagib in mn is a true chairi specialist? Or do u have any suggestions of where I should go from here? I do live in mn but I will do whatever I need to do to make my son be ok! Although I don't know how I am ever going to get him to have another surgury....first was traumatic enough!

[selmaS]

  Nah...we have to be friends on here....I sent a friend request...accept it and then you should be able to send me a PM.....

  I will let you know via the PM my thoughts.....

There is a Dr that specializes in Chiari and helping children in FL....and that might be a place to start....look into a few Drs and see what they have to say seeing his MRI's etc...

And I do understand your reluctance to have him under go anything ore at this point....just take it a day at a time, get more info and then decide.

[selmaS]

  Hi and welcome back.

Sorry your son is not doing better....if his cerebellum and brain stem are sagging it is due to too much bone being removed...this is called cerebral ptosis.....and it will require another surgery to correct it....it is not normal or ok.

Yes, find another Dr....not sure who you saw and do not say here on the public forum....contact me via a PM (private message)

Cerebral ptosis can cause headaches as bad if not worse then those just from Chiari....I am so sorry your son is dealing with this pain.