Wednesday, November 17, 2010

In Limbo - Part 4: The Last Day of Our Acquaintance

I am 50/50 when I pick up the phone.

50% wanting to get some answers out of the man. 50% freaking out because my right wrist is now hurting quite a bit and, it seems, losing some range of motion. Sigh. All 100% of me needs to meet with my surgeon asap.

I live on beautiful Vancouver Island, off the coast of British Columbia, Canada. Victoria is the provincial capital and a haven for young families and retirees alike. We are blessed with a medical system that is accessible to everyone, although it can creak along at a dinosaur pace at times. In Victoria, all hand and wrist surgery is performed by plastic surgeons. We have 4 plastic surgeons. Number of plastic surgeons in Victoria who will treat Kienbock's: 1

The answers I seek are elusive. I know this. In addition to all I have read and researched, I joined an online support group and though Kienbock's Disease is classified as "rare", the numbers in the group belie such designation. All the information I have and all the stories I am now intimate with make it crystal-clear that each case it very different and each corresponding treatment debatable. There are some constants, though, and it's these that give me the confidence to approach my surgeon again.

For those with Kienbock's, or KD as I have come to know it, the abbreviations and terms I use next will be familiar; for those unencumbered, the abbr. will be more than adequate. Suffice to say, the lunate bone is "dying" because it is no longer receiving blood and there are a number of stages and corresponding treatments and surgical procedures that attempt to either trigger or redirect that blood flow again, "revascularize", or essentially act as pain management, known as "salvage procedures". Skip ahead even. Trust me.

I am diagnosed Stage 1, possibly Stage 2 (although I'll later doubt this original diagnosis - this is what I have for the moment) and my surgeon wants to perform a radial shortening with a VBG. I am negligibly ulnar negative, -1mm. Therefore, while I don't take any major issue with the VBG, I feel pretty strongly that I am NOT a candidate for radial shortening, particularly having read so many of the complications and "non-success" stories arising from that procedure. I'm also keen to discuss MCD, a relatively new procedure that is less invasive and has reported good outcomes.

I've got my print-outs ready again. I'll stick to my guns this time. My husband is with me this third visit - he knows I might crack and we talk strategy. Stay focused, he reminds me.

It all goes wrong almost immediately. My surgeon walks in the room, barely glances at either of us, and says: So, what is it?

I decide to go with the warm up, a plea to that side of him that is supposed to help me. Help me. I tell him that my right hand is giving me trouble and I am worried. He nods, completes an x-ray requisition and hands it to me. He doesn't examine my wrist. He doesn't touch me or even look at me.

I ask him when I can get my cast off. He says in 10 more weeks. I ask then what? He says that depends.

I am starting to panic, feel a bit crazy. He's treating me like I am crazy. I don't understand. I do realize though that this is probably my last chance. I ask him if he has ever heard of MCD. I feel the air leave the room. I can see that he is deciding whether to be civil with me or not. He decides yes - for the moment.

He tells me that he has read something about it but doesn't know anyone who has performed it. I seize the moment. I show him the copies of articles on MCD that I have brought. I mutter something about good outcomes. My eyes and my body language practically beg him to look down at the papers or even take them. I feel like a Jehovah's Witness on a Catholic's doorstep.

He stops being civil. He suggests that I am wasting his time. I crack. I am not going to cry in front of this man. I say I have to go and rush out the door. While I am running down the stairs, he is telling my husband that he cannot treat me anymore.

I am crying, again, in the undergound parkade. I am clutching the x-ray requisition, the eventual test and results of which one week from now will suggest I also have Kienbock's in my right wrist. My surgeon never passes on those results. My surgeon never refers me to another doctor. I will see this man again one day, in a horrible moment neither of us can predict, but for now:

My left arm is in a cast. I have bilateral Kienbock's. I have no surgeon.

The Last Day of Our Acquaintance:
Sinéad O'Connor - The Last Day Of Our Acquaintance .mp3
Found at bee mp3 search engine

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