Trying to navigate the pages.. and I am so busy I am not on here often! Thank you all who welcomed me! I was wondering, who has been to the Chiari Institute? (we can't go to Colorado, they don't take kids under 14, and Wisconsin doesn't take kids under 16 :-( )
Her first decompression was at UCLA, and did not work.. TCI has copies of her MRI's and thinks she probably has basilar invagnation (anyone familiar with this one?) I have slight questions about her possibly having EDS as well, but not a single doctor is listening to me about that! She is not flexible, but she has such severe abdominal pains, nose bleeds, and yucky breath even though I make sure she brushes all the time...
Am I crazy? I just want to help her and hopefully get everything diagnosed and get the treatments/surgeries etc she needs..
I hate that she is going through this and I can't seem to do a thing. :-(
She tried to have fun yesterday and is paying for it today.. sitting on the couch with a headache, nausea, etc...
I'm lost and frustrated, and my insurance company is denying my consult to TCI so we are going but paying out of pocket for it... and if she has to have surgery (which he has basically said she will have to) then how do I pay for that since insurance won't allow us to go there and I don't want just any doctor cutting her open again!
Sorry... I had to vent!
They are denying because it is out of network.. Yet they let me go to UCLA and are saying I can go to Children's Hospital of LA.. both of them are out of network too.. But their reasoning is those two are "tertiary" providers.. yet when I ask who decides that and where I would find the info, they have no answer for me...
The grievance hearing was on Thursday.. they do it over the phone only, they tell me "ok present your case" then they muted it.. For all I know they were having a party in the room and not listening at all! At the end they said ok, you will have answer in 5 business days and that was that, no feedback, no questions, nothing... They have stressed me so badly, I lay awake at night wondering if I said the wrong thing or presenented the wrong fact and if she can't get the help she needs, it's all my fault... I know TCI can help her, and we are going there no matter what for the consult and paying out of pocket.. But if it turns out she needs a second surgery (which TCI has basically said she does) I don't know what to do! I'm dying inside, we are trying to fundraise, and have raised 6000, which is wonderful! But 2500 of it will be spend going there for the consult... I have no clue how to pay for a 100k surgery! :-( Any help, suggestions, anything I am open and will try!
Basilar Invagination is when the top of the spine protrudes into the front of the cerebellum. In other words, if you make the o.k. sign with your left hand and stick the ring finger and middle finger through it ... you have chiari. Now, if you take your ring finger and stick it through the o.k. sign from the bottom up ... you have basilar invagination. The difference being that your two fingers down are the herniated cerebellar tonsils of chiari and one finger up is the top of the spinal column of basilar invagination. The net effect can be the same - disrupted CSF flow (among other potential problems with how the head is sitting on the spinal column). I was decompressed at the Chiari Institute - they know their stuff. Dr. Harold Rekate was the Chief of Pediatric Neurosurgery for 25 years at the Barrow Institute in Arizona. If he has not seen this before - no one has. So, my answer to your question is: "No, you are not crazy, you are a mother who loves her daughter and wants her suffering to cease!" Hence, FIGHT THE POWER! Do not let the insurance company rule your world. If you are rejected upon appeal, which would suprise me, and you have to pay out of pocket for the initial assessment at the Chiari Institute, you will then have leverage to return to the insurance company with a new diagnosis. If surgery is indicated by the new diagnosis, they should approve the tertiary provider since they did for the original surgery. If they do not, then use the $6000 that you raised to get a lawyer. Take lots of deep breathes, care for your child, and make an appointment at the Chiari Institute. Deep Peace, Fr. D
If you would like some assistance with your insurer, I would be happy to help you. I worked at Anthem BC&BS in Appeals before I became to ill to work. You have multiple appeal options from your insurer. Then the final appeal can be made to your State Insurance Commissioner. Most people only think you can appeal once to your insurer, but they only consider that an inquiry.