Reconstruction & Replacement

There is a very long list of things I didn't imagine myself doing in my life. Somewhere on the list is searching for a surgeon who could reconstruct my shoulder and then replace parts of it.

I've had lots of lows since Friday, when my surgeon let me know, in a rather tactless manner, that I am not able to have a full replacement as I have lost too much bone in my glenoid fossa to implant a plastic prosthesis. I can have half of a replacement, but not entirely what I need. I've cried, I've raged and I am still quite mad. I haven't found my silver lining just yet, but I'm coming around slowly.

What I am on the hunt for, is a surgeon who can graft some bone to my woefully thin glenoid fossa, replace my humeral head, and then insert a plastic prosthesis onto the grafted bone. Done and done. If only it were that easy.

What about my current shoulder guy? Hasn't done this kind of surgery and said that he would have to research. I'm not too keen on being anyone's guinea pig.

I started with my extended family - there is a nurse, doctor-in-training and a pediatrician in the family and I asked them to email whomever they could to ask for referrals and recommendations. I then went to Google and looked at surgeon's profiles. Found three names who specialized in shoulder surgery in the Toronto area, and emailed them. To my surprise, they all replied. One had a name. My family heard back from a few people and the same name came up. He's in London, which is about a 7 hour drive from Ottawa. But I found someone.

So I called his admin assistant on Monday. Lovely lady. I don't know if doctors understand how a really nice, kind, sympathetic and friendly admin assistant can make such a difference in overall patient care. She said that he may be able to do my kind of surgery. I have a referral to a doc who may be able to help me and I have some hope.

I have always consciously or sub-consciously advocated for my health. Thank God I don't take things lying down, otherwise I would have take shoulder guy here in Ottawa at his word and been left with half of a replacement. I'm a fighter and always will be.

I've been listening to If I Die Young by "The Band Perry". The song is about a young person coming to terms with a shortened life. In a way, I continue to come to terms with how my RA has affected my life. I think my shoulder is another hurdle in a rather long marathon.

Stupid Shoulder

I had a pretty tough day yesterday. I went to see my shoulder surgeon, following up from my CT scan. Indeed, I need my shoulder replaced, but it seems that they can't complete a full replacement as there is not enough bone left to adhere the plastic glanoid piece to.

I am so upset, mad, sad, grieving, and emotionally drained. How did this happen? I have been under an orthopedic surgeon's care for 2.5 years, and somehow, this slipped past.

Some history: I had a consult in December 2008 to determine both shoulders needed to be replaced. I opted to have my left shoulder replaced, and that happened in May 2009. At my 6 and 12 month follow up, I asked about my right shoulder, and my surgeon said to wait, and let my left shoulder settle.

Finally, at my 2 year follow up, it was me who reminded him that I needed my right shoulder replaced. I know he sees thousands of patients, but I think he has some level of responsibility. If I hadn't driven this, who knows where it would have gone. So, as it turns out, my shoulder deteriorated at an extremely rapid rate and in the short space of 2 years, I can't have a full replacement, which means many revisions and more pain and a fairly unknown future.

Wanna know how to clear your consult room? Start crying and see how quickly the surgeons need to return calls. In my case, they both left within a minute. Poor guys, they just didn't know what to do or say.

Actually, I didn't either. And I still don't.