As my sweet 11 year cries today because as usual she feels bad and hasn’t been able to sit up all day, I open a letter from my insurance co.
It was synopsis of everything I had sent them for an appeal to cover Dr. Frim in Chicago. I found out why the denial in the first place. Here is what the NS at our Childrens Hospital wrote after reviewing a 1 year old Plain. MRI:
“Approximately 5mm of cerebellar ectopia without any evidence of tonsillar pegging or inadequate CSF around the craniovertebral junction. I cannot identify a unifying diagnosis for her symptoms to a structural anomaly that would be amenable to surgical intervention.”
He was not looking at a Cine MRI and he doesn’t even do Chiari surgeries!! I am so upset to have to fight this ignorance.
Does anyone know of a good article saying CSF flow cannot be evaluated on a regular MRI? I’ve found lots of ones that say how a Cine MRI is good to evaluate it but don’t specifically say a regular one isn’t as good.
Also I think I read somewhere that sometimes rounded tonsils can be worse as they act more like a cork. I may not have, because I cannot find it again.
Thanks and sorry for the long post. Way to many tears from my daughter and me today.
That guy is ridiculous. I’m going to look around for some information, I’ll let you know if I find anything that could help you. In the mean time try not to pull your hair out…
I can’t believe you found it. That is exactly what I read. Thank you so much!
I’m just praying since Dr. Frim agreed to see her that he thinks he has something he can help with.
I have been emailing with Amanda and she has been amazing also. She said you were great at looking at MRIs. I uploaded my daughters if you have time to give your opinion.
Thanks for all the help. I sent in my last pieces of paperwork today for insurance appeal to see Dr. Frim. They are suppose to give us an answer Feb. 4. Our appointment with Dr. Frim is Feb 6 and we are traveling from out of state to see him. We will private pay if they deny it and hope Dr. Frim can help us with the next appeal.
My background is in National Health Insurer's Appeals. I can help you in the appeals process to win your appeal. It seems like JC gave you some great links and everyone gave sounds advice. I am sorry you are having this battle with the insurer. It happens too often for the same exact reason. I wish you could focus all your attention and energy on your precious daughter.
Thank you. We have an HMO which denied the first referral. I have submitted 100 pages of comments and research article etc. My daughter also has an extremely rare genetic disorder called Axenfeld Rieger. There are only around 1,000-1,500 people in the US with it. The major is eye problems which can causes glaucoma as early as infancy. But, there are also…cranial bone abnormalities and joint laxity. I did find a couple of articles that actually said short clivus and sharp clivo-axial angle can be part of AR and the gene that cause EDS can be on the gene that can cause AR (only 1 family). So her Chiari has the potential to be very complicated.
The NS we saw doesn’t even do these surgeries and actually told my pediatrician they should be done at a center that does a lot. The problem is the age old story that in his opinion her 5mm herniation is tonsillar ectopia not Chiari or a problem. Unfortunately my pediatrician who we always had a great relationship with is a non believer.
We are suppose to have a ruling on the appeal by Tuesday, February 4. We will already be in Chicago for our Dr. Frim appointment which is the 6th. We are going early to make sure weather or nothing else causes us to miss it. If it gets denied we will have to private pay and file another appeal. The next appeal we can have a lawyer. Or if hopefully (massive prayers) Dr. Frim can help my daughter he can help with the appeal.
Do you have any other suggestions about what we should be doing at this point? I have spent so many hours on this my eyes are blurry. My stress level for my daughter is through the roof and this is skyrocketing it.
Well insurance company just denied for a second time our referral to Dr. Frim. So, we just saw him and private paid. It was worth every penny. I’m going to post about the visit right now.
We have the option of another appeal with a lawyer. We are considering it.