In addition, I was informed that Abram would have to go through a secondary "high contrast" MRI to find out if it is benign or not. It is now going on three weeks and Medicaid has yet to approve the second MRI and sent us a letter last week stating they will be canceling his insurance through them as of August 1st. So, we now have 16 days to find my son coverage and despite what they say... you can and will be denied coverage for "pre-existing" conditions since we just were told by our private insurance company that they cannot and will not cover him due to these reasons.
According to the National Organization for Rare Disorders, "larger pineal cysts are rare findings". Hearing that the thing growing in your son's brain is "rare" is horrible. Even scarier is the fact that we have had a close family member recently overcome and recover from Brain Surgery after being diagnosed with a Stage Four Pineal Gland Tumor. Due to the fact that Abram's "cystic lesion" is already 10mm and is already symptomatic it is inevitable that my son will need brain surgery to remove the lesion from his brain.
When I got the news about what was in our little boy's head I spent my nights searching for information and had a hard time coming up with much tangible information about my son's condition. I joined Forums and Support Groups and even Secret Support Groups. I was shocked to see how many adults were complaining of horrible symptoms with cysts smaller than my son's. I felt that THAT explained why we have more "bad" days than good. If my son feels how these adults feel than no wonder he is so crabby and not feeling good most of the time. We have days where its a struggle just to keep him comfortable.
However, one name kept getting brought up in all of the forums and support groups and that name was Dr. Hrayr Shahinian of the Skull Base Institute. I looked at their website, read every single word on their website at least a handful of times and talked to former patients and parents of children who are also going through a similar struggle.
So, my Dad and step-mom gifted us the hefty consultation fee and we and overnighted Abram's MRI and his 408 page Medical Record to Los Angeles. Within the week we spoke with Dr. Shahinian over the phone to hear his opinion of our son's situation. Dr. Shahinian immediately made me feel at ease with that calming voice of his but he went right into what he had to say to us. He confirmed that the cyst is the cause of our son's vision issues but did not feel that it is what is causing his Hypotonia. He went on to say that it is small compared to the cysts he sees (as he sees thousands of them a year as opposed to the Neuros here who rarely see large pineal cysts). However, he also confirmed that brain surgery would be in our son's future since it is already symptomatic and he went on to say that he advised against us getting the second high-contrast MRI because it's so hard on little kids and instead suggested that we just get another MRI in one year and measure its growth at that time.
I never thought I'd be disappointed that my son couldn't have brain surgery right away but that is how I felt.
If we know it's already causing issues and effecting his vision why not get it out while he can't remember what happened. Having to hurry up and wait doesn't seem like an option to me but it at least gives us more time to try and raise the funds that we will need to pay for said surgery. Insurance will not cover the procedure and the surgery alone is $100,000 not including the surgical team, nurses, anesthesiologists, hospital stay and travel expenses. I've heard that the final cost is in the upwards of $250,000 from several former patients. Thus the reason to start our fundraising efforts now. I am trying to be reasonable and set a goal of $100,000 by his next birthday since cold cash seems to walk the walk more than any other bargaining tool there is when it comes to one's health care.
Meanwhile, I informed Abram's Opthamalogist of our findings with the MRI and he personally called me after he had a full day of surgeries just to discuss our son's case with us. He told us he is very interested in Abram and wants to see him again at our earliest convenience. That it is rare that the cyst would be pushing the exact same pressure on both of his eyes and that he recommended getting the second high-contrast MRI just to be confirm whether it is benign or malignant. Dr. Shahinian is an expert in his field and I trust his opinion and value him as a Brain Surgeon however, the Opthamalogist reminded me that Dr. S has only seen Abram's medical records and his MRI and that he has not seen him in person as he and our Neurologist had and that our Neurologist would not have ordered a second MRI unless he felt that it was medically necessary. So, since two out of three of our Specialists say that the second MRI would be of some good we have decided to go ahead and go through with it. Hopefully Medicaid will see it our way and approve it so we can get Abram the procedure before Medicaid cancels his coverage.
So, we are currently just waiting and hoping that Medicaid comes through for us and allows for us to get that MRI before they dump us and potentially leave us without any health coverage. In the meantime, I have applied for Hawk-i and hope that we can get that insurance put into place as soon as possible and that with all hopes we qualify to get it. Abram's dad has insurance through the company he works for but he works for a small business so their rate premiums are through the roof. Purchasing insurance through them would put us right back to living paycheck to paycheck with no savings and a $9,000 deductible before they cover a penny. Add to that the fact that they have already stated they will NOT cover the surgery and I am just feeling angry and overwhelmed! So.... off to do some more waiting!
American Journal Of Neuroradiology
US National LIbrary of Medicine - National Institute of Health
Skull Base Institute