It seems like everyone has a blind date story, and they always seem to be filled with disaster. I remember my first one, I was only 15 at the time but I was set up by a girl I worked with and even though it was a double date it still was one of the worst I have ever been on. He was ugly, was a complete computer nerd and didn’t have any manners. Now if any of you knew me at 15 you knew that I was completely shallow and full of my self. It was a long night and a long month as he continued to call me almost non stop. Blind dates have sorta changed over the years though, things are done online so much now I don’t even think people get set up by friends without the would-be-daters talking via text, facebook or something else to get a feel for each others personalities, any more do they? That is a much better way to do things anyways. You have to have some idea of what you are getting your self into. Do a little research, don’t go in there completely blind. It may still turn out to be a disaster as I found out this past Friday, but at least you put your best foot forward.
So I did that. I did lots of reasearch, checked out everything I could find online about my date, I even got others opinions. Then the day of, I did what anyone would and dressed with my date in mind, wearing something memorable. I made sure to be on time because that is always important. I was totally prepared and had great expectations. I was disappointed within minuets. Dr. A, as I will call her was the worst blind date I have ever had. *To be fair to all parties before I continue I must mention that this may or may not have been a rebound date as my last neurologist had just left me. Dr. Jerry has moved and I am no longer seeing him.* Yes that is right my blind date was a doctor, but isn’t that what its like meeting a new doctor for the first time? The following is what happened last Friday at my appointment and it took me this long to write about it because I’m still trying to calm down.
Dr. A does things a little different. She asks a lot of questions, but she doesn’t let you finish answers a lot of the time. I’m sure there is a method to this but it made it nearly impossible for someone with my history and my length of problems to get to her what all was going on with me. I started by telling her why I was there. I had Chiari and my PCP and I needed a neurologist who knew Chiari better than he did to just help with it, also I am declining in health rapidly and I don’t know why. I specifically told her I don’t expect you to cure me, or diagnose me, I just need support since my Neuro is now gone. There was one thing I have had a question about a surgeon at the U had found some abnormality that he was very concerned about but was hesitant to do surgery because it was invasive and he wanted to put it off if my symptoms improved. No other neurologist has been interested in this abnormality at all. Dr. A wanted me to start at the beginning which was a mistake now that I think about it. She started asking me questions about how I felt before surgery and got all her information from that. She didn’t ask hardly any current questions. She rapidly diagnosed me with not Chiari but with Complicated Migraines. She said it explained my numbness and headaches. When I tried to tell her that I have to use a wheelchair everywhere, that I am disabled she said “you didn’t mention that” and got a worried look on her face like she misdiagnosed me but was sticking with what she said. I kept trying to bring up what I am currently like but she held to her story. At one point she looked at me and said “For your peace of mind, I don’t think you are crazy”. As dead pan as I could without showing how angry I was I replied “No one has ever told me I was crazy before, just that they didn’t know what else to do to help me” She then made a plan to do a EMG which is a nerve study and see me in a few weeks.
This is a very brief version of what happened and not even the worst of it, but I am not in the business of bashing people. I am brutally honest at times but I don’t want to just drag some doctor through the mud just to do so. Bottom line is she has it wrong and I am frustrated, and upset. I feel hopeless and not listened to. I know I don’t have to go back, and I know I have nothing to prove but I will anyways. I am going to my family doctor to discuss the appointment so he knows how I feel. I might even go back to Dr. A and do the EMG just so she can see that it will come back normal and has nothing to do with my numbness. I can thank Dr A for one thing though, she gave me the motivation to finally call the Chiari Care center in Colorado and try to get a consultation. As of right now they have my request I am just waiting for them to get back to me. I need to go and see someone, I don’t care how far away that knows this illness.
For those of you that may be reading this and thinking So what? What is the big deal, what do you need a specialty doctor for if you have already been diagnosed and had surgery? I admit it is a tad confusing for someone that is on the outside looking in. I’m going to take this opportunity to try to clear some of that up. Yes I do not need to be diagnosed. I am not looking for some miracle diagnosis that is going to all of a sudden change my prognosis or even some cure that all my doctors have over looked. There isn’t one. However, my health, mobility and quality of life have drastically deteriorated over the past 2 years and no one has an answer for that. I no longer have a CSF flow problem so I really don’t understand why it’s getting worse, and that is one thing I would like a Neurologist or any doctor to explain to me. Furthermore my Primary Care Physician (Dr. Ken currently) has always been the one that has taken care of my pain management. There have been a few times where a neuro added some Migraine or neurological narcotics to the mix with the approval of my PCP but my every day pain is handled by Dr. Ken. I did try a pain clinic for a short time at the request of Dr. Ken but it was not the place for me. They did more harm than good. So if Dr. Ken handles my pain and I’m not looking to be cured why the need? Exactly what I said, support. Things come up, Chiari is a lifetime condition and I continue to have questions, and changes in my symptoms and needs. Dr. Ken is a family doctor, he tries to understand what I am going through but doesn’t know Chiari at all other than what I have taught him. If I get hospitalized he automatically needs me to see a neurologist to make sure nothing has changed. I need routine MRIs, and other neurological exams. I have a neurological condition and I need to have a neurologist. Just like if you were to have a chronic heart condition you would have a cardiologist.
It shouldn’t be so difficult to find a doctor that will just listen to you for a half hour so you can tell them what your symptoms really are. It shouldn’t be that hard to find a doctor in the State of Utah where we have one of the most prestigious research Universities in the University of Utah, that knows what the hell Arnold Chiari Malformation 1 is and what the proper symptoms are. I know I wont give up, I know that if I would have listened to a doctor when they gave me a diagnoses that fit them instead of me I wouldn’t be here right now. It’s just like dating, you got to keep putting yourself out there, if you don’t you will never find Mr or I guess Mrs. right.