I'm so grateful for finding this forum! As many of us started this naive to such a condition, how can it not be so scary because of the initial mysteries? I mean, how many of us actually know someone who's had it before? My nightmare started with my daughter's neurologist told me over the phone that she would need brain surgery before I even knew the details of Chiari. What an arse move, but as it is, the medical society has been great. The downfall is Tasia and I have to fly off our island of the Big Island to Oahu for consulations, surgery and follow ups. I'm terrified how we're going to deal with her surgery and be expected to transport her on a plane for the surgery that's very soon. You've all been very informative in so many ways but I don't think I read anything about this thus far. As it is, thank you for being a part of the others Chiari family and I look forward to growing more as I return to these discussions. Please continue to stay positive and count your blessings because as Chiari is just one of my life's many trials and tribulations, I'm still grateful for the tools and resources that offers us information as well as support because with the emotional AND physical balance, we'd be even more screwed by something that is already difficult. Much Mahalo with Love and Aloha, Gina (mother of 11 year old Chiari patient, Tasia)
Welcome, Gina. You have a great outlook. It’s sometimes difficult when dealing with intimidating symptoms, but I, too, have found that focusing on the positive and developing coping strategies is essential in managing chronic illness. Here’s a link to a search on past discussions related to flying and Chiari symptoms that may be helpful-
http://www.chiarisupport.org/main/search/search?q=Flight+
Ask your medical care team also about how best to manage the flight home after surgery.
Let us know your daughter’s surgery date and we’ll be sure to check-in.
Best wishes to you both.
Hugs,
Laurie
I was prompt about asking the NS about flying being an issue and they were reassuring it wouldn't. But again, the cynic in me wonders if they've actually ever flown themselves after operation. lol. As it, that was very helpful and thank you so much! Tasia's last consultation suggested waiting for her surgery to be in the summer as to not interfere with her schooling and mainly seeing no urgency. I'm going to a 3rd consultation to be sure since the first doctor wanted to perform ASAP. She's not uncomfortable, so that's reassuring for me to buy some time as I research further.
Much Mahalo, Laurie....Aloha, Gina
Hi Gina,
Can you share with me, how is your daughter now?, I am chiari 1 patient and worry o death going to have surgery waiting for second opinion..please share your experience with your daughter surgery please, yes, I also glad i found this site.
b2wc, status thus far is now a THIRD opinion. The 1st surgeon was willing to open up his schedule for surgery ASAP. The 2nd found no urgency whatsoever, hence suggested the summer to operate which made me put a brake on all the arrangements which included the school coordinators and coordinators to help with at home care post surgery. With all that said, the ongoing unknowns and fears are present, but I am confident that all is going to be well NO MATTER WHAT as I pursue further answers and do further research. I know it sucks to not know, but we're all riding by the edge of our seats with so many unique and individualistic situations. Today, she feels no serious pain but i wonder if I'm sheltering her. Most recent symptom is numbing in her right leg when we was taking a long walk, which makes me nervous, but I'm blessed that there are no more severe issues. Yet.
Dear, don't give up. My empowerment is hers. As you've noticed upon reading, there are so many different experiences....good and bad. So be patient and hopeful!! That is exremely vital to your state of mind and healing emotionally and physically!! I have my days. I do. But let's take it one day at a time......love and aloha, Gina
Hi Gina, that is the problem there are so many experiences god and bad, that make me a bit anxious..as it is quite a big issue though as it is a part of your brain which is very vital..and you will never be the same, I have to resign..as from now..I am unable to deliver my day to day role like I used to be which very upsetting..I just keep praying to God I hope after the operation I will go back to my normal me again..there must be people who are successful and do not bother to join this group????