"Suffering the Slings and Arrows of Outrageous Fortune"

The Snort

Well, been to the doctor. Got an MRI scheduled for Sunday morning at 9. That was really the goal so I should be happy…

But Dr Black snorted when I said I thought it was Chiari. He snorted. I am dwelling on that snort. I would like to think it meant ‘poor kid, it couldn’t be Chiari on top of everything else she is dealing with’. Unfortunately, I suspect it might have been more along the lines of ‘ this lady is several fries short of a happy meal’. He is a great doctor, I really like him and trust his judgement. But he is a deer in headlights when it comes to all my daughter is dealing with.

Like most doctors, he has heard of EDS and Chiari. Probably read a paragraph on each in a textbook back in med school. A page, tops. That is probably the extent of his knowledge. I mentioned POTS and autonomic dysfunction – no clue and he even admitted he would have no idea what to do about it. I know. Hydration, increased salt, maybe some caffeine, maybe not. Beta blockers if that doesn’t work. I know this because I spend hour upon hour researching all the stuff that is going on with my kid. It is my job. I must find out all I can to protect her from her own body. I just wish he knew about it without me telling him.

I probably was less than tactful – by the time we saw him, I was pretty wound up. Maybe I could have been more deferential, let him led the way and just gently toss my thoughts into the ring at a convenient moment. But, darn it, I don’t have time for that nonsense. This is my child. She is suffering. Her brain and neurological function could be at risk. I can’t dance around that, no matter who I annoy.

What this has brought home to me is the power that medical professionals have over me. I know I am well versed in all things EDS. I know about as much as a lay person can know about Chiari and POTS. I know what path we need to take to find answers. I should – theoretically – be able to stand as a partner with any doctor and seek the best care for my child. I thought I had stepped beyond a point of them being able to affect me because I have educated myself.

But that snort wounded me deeply. Deeper than I would have thought possible. I am dwelling on it. It lays bare all of my secret doubts, I suppose. I do worry about doctors looking at me and thinking Munchausens. I do worry that they think I am crazy or that we are attention seeking. I do worry about offending a doctor and burning bridges that could be needed at some point.

I don’t want to be the expert. I want a doctor to be the expert and take me by the hand and tell me he can make it better. I want to walk into a doctors appointment and not have to spell Ehlers Danlos or give a lesson on it or a related condition. I want to be cared for and have someone tell us how to make it better. In all fairness, he did immediately say we need an MRI to rule in and rule out. He never wavered on that point. He didn’t mention a neurologist and I personally think we need one ASAP. Guess it will be a matter of waiting to see what the MRI results are, although, as I know because of my research into Chiari, a neurologist must look at both imaging results AND symptoms in order to make a diagnosis. So, really, the MRI is just the first step in a long process, which is frustrating.

I don’t even know what to pray for regarding the MRI. I don’t want it to be Chiari. I really, really, REALLY don’t. I also don’t want it to be any of the related problems that go along with Chiari. I don’t even want it to be cranial instability. None of them would be good. All would likely require brain surgery. I can’t even bear the thought of Em having an MRI, knowing how she is afraid of it, let alone actual brain surgery. But, there is clearly something going on. I would be shocked if we aren’t dealing with cranial instability. I KNOW we are, as a matter of fact. And, at this point, I would bet money that there is brain stem compression to some extent. So, I guess bottom line is the usual prayer. ‘ If there is something going on, please let it be found quickly and let it be something that can be fixed. And please let us get to the right people to solve the problem quickly.’

I am getting less hopeful by the moment that we will receive help quickly for the current problems. And exactly what we need is speed. Why does it have to be so difficult?

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Comments on: "The Snort" (2)

  1. Brenda Teague said:

    I just found your blogs and I just wanted to say please DO NOT wait for the doctors to send you to specialist. Make the appointments yourself and go get things checked out. I have been down the road you are going down now. It took years to get my son diagnosed, years of frustration, years of doctors thinking I was “crazy” and looking for a problem.
    It turns out my son was diagnosed with EDS and “maybe” Chiari, cranial cervical instability and settling. After going to a neurosurgeon “on our own” we found out he did not have those issues as far as they could tell at this time. He did and does have horrible headaches. We also sent all his films to the Chiari Institute and had them looked over by their professionals. They also agreed that was not one of his many problems. Thank Goodness. I had doctors look me in the face and you could see they thought “this woman is crazy and just wants attention”. I now feel vindicated but we lost years of getting him help and years of him being in pain without any one listening.

    • Hi Brenda,
      Thanks for commenting! Fortunately, we do have good specialists working with us right now. We have seen Dr. Tinkle and he gave us the diagnosis we were waiting for. We see the neurologist again tomorrow to see where we go from here – had flexion/extension x-rays done, so we will see what they show. I would love, love, LOVE for it to not be cervical instability but my gut tells me it probably is. It certainly explains the worsening symptoms we are seeing. I have thought all along that the Chiari Institute is where we need to go. They are the experts and will be able to guide us whatever the results.

      As far as the pediatrician – well, I usually love him and he has done great work for us. The day I brought up Chiari was not his shining day. He might think I am crazy but even he would have to admit I have a pretty good record of being right! He fought hard for us to get to Dr. Tinkle and unquestioningly sent us to PT and OT so I won’t give him up yet – many more days like that one though and I might have to replace him!

      Anyway, thanks for dropping by and sharing your experiences – you are my first comment ever. I really just wanted a place to record my own thoughts but it is nice to meet folks who understand exactly what we are going through. (BTW, How old is your son and how is he doing now?)

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