"Suffering the Slings and Arrows of Outrageous Fortune"

A new chapter

You probably have heard by now that Dr. Tinkle is leaving Cincinnati to go to Chicago. I found out about a month ago and it has taken me this long to be able to write about it here.

I must admit that, even though we had a parting of the ways when it came to the Driscoll Theory, I am not thrilled that he is leaving. I mean, he certainly has a right to go wherever he wants and all… but the one thing we had going for us in all of the ups and downs was that one of the leading EDS experts was our doctor and he was a couple hours from our doorstep. So,to be perfectly honest, I am feeling a tad bit abandoned at the moment and I am trying not to be bitter about it. Em is feeling pretty abandoned as well – it was not a pleasant bit of news to share with her. Yet another wound inflicted by a doctor, as far as she is concerned. I am with her on that one.

On the other hand, I am seeing that this could be positive for us. With a little bit of luck, the doctor(s) taking over for him, will be [a bit more] willing to consider the Driscoll Theory as a viable treatment. (In any case, there is no doctor on earth who will convince me to stop Em’s Diamox, so it would just be a matter of agreeing to disagree if they don’t see its worth. But, gosh, how great it would be to have a doctor who just accepts it because it is working!)

We will be able to [sort of] start over with Dr. T’s replacement and maybe make a new start. Build up some trust and work together to make progress. Become a team.We need to get a referral to a GI doc and to the Mast Cell specialist down at Cincy and it is possible that we will need to get Em’s wheelchair down there instead of here at home. There is much to do and I am, frankly, tired of trying to manage it myself. It would be awfully nice to be able to have some help from an expert – even one who ‘just’ worked with Dr. T.

So… after much procrastination and hemming and hawing on my part, we have an appointment to see Dr. Neilson, one of the doctors who is replacing Dr. T, on September 14th. By every account, Dr. Neilson is great and I am optimistic that we will be in good hands. I am thinking of this as a new beginning and a new chance to get past some of those old hurts.

I wish Dr. T well – I truly hope he is going to bigger and better things. I have long suspected that Cincinnati Children’s was perhaps not totally onboard with the EDS cause and he was, therefore, boxed in or at least had accomplished all he could there. I hope he accomplishes his goals and has found a new path to improve the lives of EDSers. I will always be grateful that he diagnosed Em and that he was so compassionate and caring – he was exactly what we needed at that particular moment in time. I hate that we didn’t see eye to eye on the Driscoll Theory and I hate that my opinion of him ended up being a little tarnished. But, I still have a great deal of respect for the level of commitment and care he has shown to the EDS community and I wish him well.

For us, this is simply the next chapter in what is likely to be a very long book.


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