and other stories from the land of OZ. I am here at Smoot’s house in Springfield and I am mentally exhausted. I don’t quite know what to think of this whole ordeal. I was so hoping beyond hope that Dr. Frim would be “the answer” to our Neurosurgical issues. Alas… I do not think he is. Or not at this point anyhow. Dorothy was so sure that the Wizard would have the answer to all her problems and she arrived to find nothing more than a small man behind a big curtain. He journey served to do little more than help her appreciate home. As has ours.
The biggest thing that did happen for us is a diagnosis. Kyleigh definitely has a Terminale Filum. Her spinal cord is so tight that Dr. Frim believes it may be pulling on her brain. Which may be causing a Chiari Malformation. Because… yes… my intuition was correct… she has ACM1. Her cerebellum is visibly herniated into her CSF Space. Here is an illustration of what we are talking about:
I am pretty disillusioned with the whole neurosurgery world right now. Our experience with Dr. Frim was definitely not what I had expected from everything else I had heard about him. We waited over 6 hours to see him. That is just unacceptable to me. I understand that there are times when you have to delay for emergencies or something else but just send us home and make another appointment. THEN even after waiting 6 hours the RESIDENT was the one who came in a began explaining things… I wanted to look that guy in the face and say… “if your name is not David Frim… please leave and send me the doctor that I drove 7 hours to see.” I just don’t understand. It seems that Kyleigh’s case is “boring” in the scheme of neurosurgical issues. Which is FINE. I am glad! That means you should be able to perform her surgery in your sleep.
Maybe I am naive to believe that we can have it all. Our docs have spoiled us. Megan, Joe, Levitt, Dr. Alam… maybe a Dr. Joe doesn’t exist in the neurosurgical world. Maybe Kyleigh just is not interesting enough for any neuro to really CARE about treating her.
Our trip to Chicago has left me very confused and disheartened. Even when we were delivered life changing news by Dr. Alam… certainly something we never expected to hear… that we would more than likely be cathing for life ….. I did not feel this way. There is something just not right for us about Dr. Frim and Chicago. Its just not “it”. We will return home confused and sad that we are still not at the end of our journey. Still looking for someone else to take care of us the way we EXPECT them to. I refuse to accept that there is NO neuro out there who is a “Dr. Joe” or a “Dr. Alam”. I will not stop until I find that person.
We have heard good things about several other neuros in various other states so Monday I will begin my search here at home. I am going to “interview” neurosurgeons until I have expended my options. If I do not find one I trust… then we will not be having surgery. I cannot hand my baby over to just anyone and I won’t. We still have unanswered questions about the black legs. Frim attributed those to her “VACTERL Syndrome”… that in itself about sent me into to fits and had I not been mentally exhausted I would have had to say my peace on that. I just don’t buy it. And heaven forbid I am NOT looking for anything else to be WRONG with my child. I am NOT a hypochondriac… but I AM RIGHT 99% of the time. I was RIGHT about the Chiari… I was RIGHT about the bladder… I am right about these legs… this is not right and heaven, earth or hell will not stop me from finding an answer to that.
Pray for peace and understanding tonight for us. Its been a hard three days and it shows no signs of getting easier anytime soon.
Pray for the doctors on our list that ONE of them will be who we are looking for…. for
Dr. Thomas Pittman
Dr. Bob Owen
Dr. Karen Bierbauer
Dr. Kerry Crone
Dr. Francesco Mangano (heaven forbid)
Dr. Michael Handler
Dr. Ben Carson
Dr. Jerry Oakes
And for anyone else who may be “the one” who we have not mentioned because we do not even know about them. Pray for Joe who is now looking for a date for our colostomy closure and dealing with two very upset parents who could have had this surgery a month ago. Pray most of all for us to make the best decision possible for our daughter.
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