My Posts
5 hours in the Chiari Malformation Community - 1
HI all please wear your purple tomorrow Sept 3rd to show awareness for Chiari and support our friend as she heads in for surgery. Sending good vibes and prayers to her and to all those in charge of her care. <3 and sending healing MoJo for a smooth recovery.
5 hours in the Chiari Malformation Community - 4
Hi...as the others mentioned deff go back and see what is going on....it may be a number of things....most likely a related condition or after effect from surgery, cerebral ptosis or scar tissue, which could be creating another CSF obstruction..... Sometimes it is a related condition not found prior to surgery like POTS, ICP, CCI, tethered cord, ehl...
5 hours in the Chiari Malformation Community - 2
Hi and welcome to the Chiari forum. As Frankie mentioned do make sure his teachers at school understand when he asks to go, that it could be a problem....so they do not tell him no,....' and the link he provided is a list compiled by the members here,...it is not meant as a referral nor an endorsement of those listed on it, only that a member...
5 hours in the Chiari Malformation Community - 24
Hi and welcome to the Chiari forum, The member you have replied to may no longer be an active member,,,so try and send them a PM....(private message) this will generate an e-mail so they know someone is trying to make contact. Have you had surgery for your Chiari?...have you been seen by a true Chiari specialist?
5 hours in the Chiari Malformation Community - 4
Hi....as they mentioned above, it is always going to be your decision to have this surgery unless you are in a critical situation....then the Drs will decide....most times, we make the decision based on what our NS shares with us, if they feel surgery is a good option, and the % rate of benefits, as well as how they feel it is affecting us and our overall ...
5 hours in the Chiari Malformation Community - 20
I would want a true Chiari specialist to review the MRI....and I would not go by a radiologists opinion.....JMHO Do you have copies of your MRI? IF so some of the NS's here in the states will review them for a nominal fee....it may help you know what is going on, and they may be able to offer a consult with your Drs......
5 hours in the Chiari Malformation Community - 72
So glad to hear you are doing better.....keep us posted !!
5 hours in the Chiari Malformation Community - 1
Hi and welcome to the Chiari forum. With your surgery, did you also have a dura plasty? If so, what type of patch? It is possible that you have a CSF leak.... Call your NS ASAP and go in to be seen..... Laying flat and keeping hydrated can help....but do see your Dr.
Aug 30, 2014 in the Chiari Malformation Community - 72
I was flat.....but to use a pillow is ok too as I know I did use one ....it depended on how I was feeling.... If you do not feel better in a few Days or get worse contact your Dr again.
Aug 30, 2014 in the Chiari Malformation Community - 4
Hi we do have a list of Drs in Australia...it is a small one ...not too many return to add their Drs....so, if you find one that is not on the list please keep us informed on the outcome to add them..... Here is the link...keep in mind this list is compiled by members of Drs they have been to and liked, it is here only as a starting point in your rese...