Hey all, sorry for no updates, but I assure you things have not been quiet. I don't know if it's from the medications or additional symptoms, but Melanie has now fallen down several steps 4 times now. She really can't function and is sleeping roughly 18 hours a day.
I couldn't travel to Indy last Friday due to just having knee surgery, but I was shocked and appalled at the "Final Report" given by one of her lead physicians. It was so full of errors, misinformation and things that were completely wrong that I had to drop everything else and immerse myself in this 100% rather than just "follow doctor's orders" as given to her. A 'for example' of incorrect information on Mel's "Final Report" explained how they were treating 'facial pain'. WTF?! She's
never had
facial pain! She's been basically blind and has suffered from severe inter cranial pain and optic nerve pain.
After reading this severe misinformation, I nearly panicked when I spoke with several neurologists and they told me that 'facial pain' can be quite severe. However, I was told by
all physicians and neurologists that facial pain is almost always related to postherpetic neuralgias, which is something Melanie has never exhibited, has never been mentioned and is related to shingles and is caused by a varicella zoster virus, for which she has never tested positive! There are also physicians who are named who state that they have seen Melanie and have been involved the entire time who we've never heard of and have never seen Melanie. After I read this 'report' to Melanie, she quickly spiraled into a deep depression and said "Great, they want me to just do nothing but take these worthless pills and see me again in 3 to 6 months. Why don't I just go pick out my coffin now so I can be sure it's a nice pretty one".
Needless to say, that is crushing to a father; especially since Mel has been unbelievably courageous, strong, and put up with unimaginable pain along with (very depressing for a beautiful young lady) a huge amount of water weight gain from massive doses of steroids for almost 6 months which, now, I'm told should have been stopped 3 or 4 months ago when they did not help. So, after much consultation, we went to Indianapolis again yesterday to have another 4 tesla high contrast MRI performed and to meet with her actual surgeon; the first time since he performed her surgery.
He seemed confused and kept asking "who is running this case". All we could say is "We want to know the same thing!" Half of the day yesterday was spent trying to get a complete copy of
everything they have done and DVD's of all her scans. I am to send all of this information to my wonderful 'behind the scenes' physician in Boston for him to review and for his colleges to review. If necessary, I already have a verbal "bring her in" to Children's Hospital of Boston, which is the nation's highest rated hospital. However, I must send them all the information on what has been done first, so they do not waste precious time and resources performing tests that have already been performed. They also can look at the tests and arrive at their own conclusions. Although I said I'd just stay and wait for all the copies of the records, they insisted it would be a "day or so" and they'd mail them to me.
So; she is worse now than when we took her to Indianapolis and before her brain surgery. She is exhibiting new symptoms, further loss of vision and extreme confusion and depression. It's killing me to wait any longer, but it seems I don't have any choice and I am way behind in my own business. Within one day, I can have my coach packed and leave for Boston and just live in the hospital's parking lot there until something is resolved. I don't know if that is what is going to happen, but it is becoming increasingly hard for me to not start asking some extremely blunt questions of several physicians who have treated Melanie in Indianapolis; especially the one who saw her exactly 1 time and wrote her completely incorrect "Final Report".
I feel that I've been very patient and understanding with the physicians because medicine is not an exact science. However, with her condition getting worse and the almost completely incorrect (in every aspect) "Final Report" given, I cannot sit and wait much longer at all. I want to simply get her cured. Then, if there was some gross negligence along the way in Indianapolis, I feel obligated to pursue that issue as well not only for Mel, but for future patients. However, at this point, I just do not know exactly what is the case in that aspect; but I will find out when appropriate.
As always, thank you all so much! You all have been a great help. I'm trying my best, but now I'm beginning to start unraveling myself with so many inconsistencies and flat out errors. I do not know what is appropriate conduct for physicians and hospitals, but I do know how I can get in contact with people who can tell me. This is not only taking a severe toll on Melanie, but on so many other things that I cannot begin to describe. As I said, my main goal is to get Melanie better. I'll never lose sight of that goal. Thanks again!
Like he said ... if a crazy Kansan can help, just yell.