Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 well i know i have not been here alot... some might recall a month or so ago i got some really bad news about tiffanie and her brain deformity. well i will post that part of the update in a second... but first i have good news. apon exam tiffanie had NO signs of active disease.... and acording to the last coupple labs her labs have been NORMAL! so it seems the remicade is doing awsome for her. now about the deformity.... on monday tiffanie had her MRI... and today the appt with the sergeon. there really is not easy way to post this so i am sorry if it might not make much sense...... her MRi showed a coupple things. one; that she does indeed have the chiari malformation. two; they also did a view to measure how much fluid is passing from the brain stem and down thru her spinal cord.... indeed the malformation is compressing her spinal cord and limiting the fluid supply... they also do think that her wetting accidents are another symptom, but to be sure we have to have a test done to make sure it is just not an over active bladder. if the test comes back normal they feel then it is caused from the malformation. the dr is sending her case to the chief nurosurgeon who is also a chiari malformation expert.... he said that tiffanies case is a very diffacult case and he wants to make sure this other dr agrees with all the findings. tiffanies case is diffacult for a few reasons but mostly they are worrie about infection from surgery due to her being on the remicade and having a low immune system. after we do the baldder test we meet with both brain dr's and at that time we will be schedualing her to have brain surgery. they will go in.... they will remove some bone and some of the extra brain she has that is compressing the cord.... they will then sew her up and she will hopfully be fixed. when you decide to become a parent; you think about the responcabulity that you have and decitions you will make. private school, or public, red bike or blue, right vs wrong... ect... but you just can never really be ready to say ok; cut open my babies head take out some of the bones that are suppose to be there... then remove some of her brain sew her up and send her home.... i sit here thinking did i really just make that choice?? why tiffanie? why now? why at all???? when did it go from a simple headache to cutting open her brain??? and mostly am i doing the right thing?? will she hate me later? will she be the same tiffanie after? but i am sure that everything will somehow turn out ok... this is a bit more long winded then i planed, sorry. just very emotional right now Tiffanie age 4 systemic Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.