S.R. asks from Port Crane, NY on February 27, 2007
Anyone Ever Heard of This or Been Through This?
My daughter has recently been diagnosed with Chiari Malformation. We were sent to CRouse Hospital to see Doctor Holesapple. We need to go back up 3 more times for testing before he decides if surgery is the right move.
My question is , has anyone been through this? I am now looking into SS disability for her to help out with these medical bills, as our insurance won't even touch the bills after a certain amount per year( which will be up after the third MRI) Any feedback would be nice.
So What Happened?™
I just wanted to update everyone on my daughter. She does have a serios case of this and will definetly need the surgery to correct the Chiari. We are very nervous but know that this is what needs to be done. I bought Dr. Holsapple's report online and it's perfect, so I do trust him. I am trying for Medicaid because the doctor feels because once she has the surgery, she won't be disabled , so he doesn't think I should apply for ss disability, which is fine but I just don't know how we are going to pay for this.. (Madison has used all of her insurance for the year on her testing..(5,ooo) My husband has a seasonal job in construction , so as of now we qualify for Medicaid, but he will be going back to work within a couple weeks and after that I know we won't qualify. I am wondering if it would be selfish to ahve a benefit, and if we did, would we wait til' after the surgery to see how much the bills would be? Thank You everyone and I was also wondering if anyone knew of any support groups online with other parents' who have had a child with Chiari Malformation.-S.
More Answers
T.L. answers from New York on March 02, 2007
Hi, yes , my aunt has Arnold Chiara malformation. She was not diagnosed until she was an adult, but was told she was born with it and it is most likely hereditary but no one else that we know of has it. She went through alot of testing before she finally got dignosed. It has been causing her headaches, and alot of other bothersome symptoms. Her brain is actually seeping down. She has of this point opted not to do surgery now. I will ask her more info on it if you would like, just let me know. Good luck. T.
C.S. answers from New York on March 01, 2007
Hi Sara:
I saw a story in the Discory Health Channel about a tennage girl who was diagnosed with Chiari Malformation. I know that she used to suffer from terrible headaches. First doctors tried a stretching machine that would pull her head upwards and that did relieved her headaches. She ended up having the surgery and the outcome was great. She didn't have the headaches anymore and even went into becoming a model.
I just wanted to wish you good luck with your daughter!
C.
K.T. answers from Binghamton on March 01, 2007
check into hospital aide. It can help cover (even wipe out) the bills for the MRI (if done at the hospital) if you qualify you can get 10-20% off and if you really qualify (like we did) they wipe them out and cover them in full. If you cant make the minium $50 a month payment (and I dont know many people who can afford that for ONE bill every month) you may qualify.
I hope this helps ease the worry about payment.
K.
No one told us about this benifit untill one of our hospital bills went to collections (yea isnt that nice)-then they mentioned that this service existed with a strong (insert eye roll here) appology to not mentioning it sooner and who knew we qualified. I hope you guys can get this aid and things get as easy as they can with all that is going on.
R.N. answers from Binghamton on March 02, 2007
I found that the best source of information on any medical issues is Medlineplus.gov It's a website from the National Library of Medicine. I did search it and found a number of articles about Chiari Malformation. Maybe you can check it out.
S.G. answers from New York on March 01, 2007
Hi S.,
Chiari Malformation is common in kids with spina bifida. My son has Spina Bifida but not chiari malformation. You may want to visit the Spina Bifida Association of America (SBAA) website for more information - there is also a wonderful listserv with hundreds of parents that can offer any advise. Most parents on the site go through similar issues and it's a great forum to learn from. Best of luck.
S., mom of Niko, 3 yrs old, spina bifida and hydrocephalus (has a shunt)
E.L. answers from Rochester on March 12, 2007
I did not know what this condition is, so I found this interesting description on google:
http://tinyurl.com/ytur2v. It seems that the outcome of surgical intervention is positive.
Email
facebook
twitter
StumbleUpon
digg it
kirtsy
Technorati
reddit
del.icio.us
blinklist
simpy
