My daughter is still waiting on her Neurology appointment, 22 Jan we are on a cancellation list though...fingers crossed, to get confirmation on the chiari. But yesterday I went home from work to check on her and she looked horrible. She looked like she was conpletely disconnected and her hands, cheeks, and lips were shaking. She started to cry as she is having more things happening on a daily basis. I do not know what to do to help. She is 15 and missing out on life. I guess I am just wondering if this could be tremors or something else. Plus I just feel confortable venting here. Thank you all for letting me.
All I can say for sure, is that you may come here anytime to vent! We have all used this board to do so. I had hand tremors, and my lips would go numb and shake on and off. Everyone is different, so I am not sure if it is Chiari related or if there may be something else like dehydration, low blood sugar etc going on. Do you have a Primary Care Physician that you are comfortable with, that knows what is going on? If so, it wouldn't hurt to have them see her to make sure it is none of the other issues. It's likely that it is just the Chiari, but I can't say that with 100% certainty. The Chiari had me feeling very weak, tired, shakey and overall just worn out before surgery. There were times my legs would shake so bad that I wasn't sure if I would be able to continue standing. As a parent, I can only imagine how hard this is on you. Try to just make sure she eats and drinks properly and gets enough rest.
Please let us know how she is doing and Please feel free to come here to vent anytime!!!
Has she had any interest in talking to kids her age that have Chiari?
Nicole
Last night when she broke down I thought about her getting in contact with other kids going through this. We have dealt with POTS for 6 years now and she has such a handle on how to deal with those issues but this is really just throwing us both for a loop. Do you know of a kids group her age that she can talk to?
Hello and hang in there! I know with me I have Syringomaelia W/ Chiari 1 malformation and from day to day I never know whats going to be happening. Every day the pain and symptoms are changing my legs vibrate or my face goes numb. So the best thing you can do for her is to BELIEVE her and that her pain and fear are real,Listen to her and the hardest thing for you will be to stay strong for her! I know from experience that it makes all the difference that there’s someone who believes all the crazy things that your body does.Make sure you get the support and YOU time so you dont get burned out.Your health is just as important.And vent away because we all do it and it feels good!
Thank you everyone. After all of the discussions I have read on this site I most definately will be requesting a NS unfortunately we are with Tricare (military insurance) and there is a referal system that is a bear. So we have to see the NL first. Unless we end up in the ER again, the I feel I am armed with more info to be more forceful....thank you all!! Also, I totally believe her, like i said we have been dealing with the POTS since 2006 and those are crazy symptoms also. Just all over the place. But, lately with this possible chiari there is a difference in the syptoms, her disposition, even the way her face is. She carries the discomfort and pain all over her face.
Thank you for all of your advice as always. Knowledge is poower!!