Well, we see the neurologist April 24th. At this time Kaylie has only had a MRI of the brain. We know she has chiari, but we don't know if she has a syrinx in her spine, and how far her brain is protruding. The measurement really doesn't matter... b/c you can just have a small protrusion (5mm or less) and have symptoms and a syrinx. OR you can have a very large one, like 22mm... and not have any symptoms or a syrinx. You can even have a syrinx, and no symptoms! Each person is different. She needs to have a full spinal MRI (to look for a syrinx) and even a CINE MRI (measure spinal fluid flow)... there are a couple other helpful ones , even a CT. But I really want to rule out a syrinx! More info on the "syrinx... top of the blog under "What's Chiari?" talks about it.
After all the research, talking to other moms... and even top medical websites.... It is recommended to seek out a neurologist and neurosurgeon that specializes in chiari. When we say specialize, I mean has several cases, has done over 200 surgeries... 1000 would be best. There are thousands of neurologist and neurosurgeons in the United States alone.... but there are only a few that actually specialize in chiari. There are a ton... and I mean a lot, that are very interested in these cases, but do you want someone that is interested in your child unique illness... or do you want someone that knows how to care for it, and does it on a daily bases, and is involved with chiari research??? I don't want my child to be some one's fascinating case! So... who are these amazing doctors??? Well, not any in Oklahoma, that I have ever heard of. There is one in Chicago, Maryland, New York, Colorado, Virginia, Texas, and Ohio. In fact I have come across three adults that have had the decompression surgery that are from Oklahoma. One is from Chickasha, and the two others are from OKC... the one from Chickasha went to a Colorado neurosurgeon. And the two from OKC, went to The Chiari Institute (TCI). Now, you do need a good local neurologist that can work with the specialist you choose... because this is a condition with a life time of care and MRIs.
I have looked into three of them really well... two more so than one. The two that Ben and I are interested in getting opinions from are Dr. Rekate, from TCI in Great Neck, NY and Dr. Ben Carson, from John Hopkins in Maryland.
Our Plans.... we see our local neurologist on April 24th. Talk to her, establish a relationship with her. Have her script out a spinal MRI, and any other test she feels at the time needs to be done. If a syrinx comes back on the spinal MRI... Kaylie will need surgery sooner rather than later. We would then see the one or both doctors as soon as possible. If it comes back there is no syrinx, then we have time. We already have appointments set up this summer to see both doctors. We will then meet with both, listen to each of their opinions and treatment plans, then pick one to go with on continued care. For some crazy reason one of these two don't work out for us, I will then try to meet with Dr. David Frim from Chicago. But I think TCI or JH will work out! If our local neurologist does not run any of the test that are typically ran for chiari patients... No Worries... up north will take care of that.
Financially... We have been offered so much support, even financially. How our insurance works: we have a PPO In Network and Out of Network Plan. John Hopkins in Maryland we believe is in network... but Dr Carson may not be... its still being looked into. The Chiari Institute (TCI) ... only excepts out of network insurance. Our out of network plan is ...$500 deductible, 40% co-insurance (meaning we have to pay 40% of the charges after the $500). I have also talked to our insurance company, and supposedly there is a max out of pocket of $6,000... meaning possible only having to pay $6500 out of pocket. BUT..... and I stress this BUT.... it also all depends on the charges insurance companies pay out. For an example... if you had a procedure that the doctor charged $50,000... the insurance company may say they only allow $30,000 for that procedure... meaning we would then be responsible for 40% of the $30,000 and the other $20,000 that we still owe the doctor. Kind of crazy... YES!!! That's why insurance companies suck!!! TCI is looking into our insurance, and will be contacting me soon, on the information I need to know. After receiving it all, I will then be contacting our insurance company to verify all this again, and to get it all in writing.
Regardless of the cost and the insurance.... Our Daughter Will Get The BEST Care!!!! This is something that will not change in Ben & I's decision! I know we have family concerned about us choosing someone that is not in our insurance coverage.... But I don't think brain surgery on a child is where you start deciding money/cost is more important. So we would appreciate everyone's support with who we decide to go with. If we have to make payments on bills for the next 40 years... then that is what we will do!
We currently already have the funds ready for our first trip up north, for in the summer. If Kaylie ends up needing surgery... the plans are that Abigail & Mason will be staying with my parents in Oklahoma. Just Ben, I, and Kaylie will go up north, if she needs surgery. When that time comes... b/c she may need it this year... or 3 years from now, we will then start fundraising for her medical costs. I have been contacted from a few of Ben's fellow officer's wives in regards to fundraising for Kaylie... Thank you ladies, you don't know how much that means to us! When the time comes... things will be put together. We will also contact the Ronald McDonald House, they have a house near TCI, and we have heard they only charge $25 a night to stay there... its a house, with kitchen and everything.
I'm not worried, about the money part... you think one would be... but I'm more concerned about Kaylie's care. It will all work out!