Surgery is set for 3/6.
When I told my brother Joe that all the shoulder muscles were gone and there wouldn’t be any return of function, he had a lot of questions. Which ones were gone? What were they reattaching? I couldn’t answer. My conversation with Menendez had been startling, dismaying, and vague.
So I scheduled yet another pre-op appointment with him this week, when my orthopedic physician assistant brother was in town.
Joe and I went together yesterday.
We met with six people total. There was the guy who took my blood pressure, a succession of two surgery residents, in increasing order of seniority, the nurse practitioner Connie, who calls me with updates, then Menendez himself, and finally the guy responsible for ordering the replacement part.
I feel like Joe had a pretty great time. He loves his work and talked to everybody enthusiastically about their jobs and how things worked at their hospital.
When Menendez finally made his appearance, and I told him I was still unclear on what to expect from the surgery since our last meeting, Menendez didn’t wait to find out what clarifications I needed. He launched right in to the exact speech he had given last time. Joe and I each had to talk over him several times to get the additional information we had come for.
For one thing, Joe got the exact list of muscles that were taken out, and was able to see the xrays. Joe admits there’s more missing than he originally thought would be. However, we found out that the deltoid from the arm IS going to be attached, if not to the scapula itself, then at least to the ‘meat package’ around it.
I was also concerned about the notion that he was going to take the pectoral. Since the plastic surgeon hadn’t mentioned it last time, I hadn’t had a chance to really ask about it. The thing is, it’s hooked up right now. It helps me hold my arm to my body. Am I going to lose that function? Probably not, it turns out. IF they end up taking the pectoral, they probably won’t take the whole thing.
So, between the deltoid and the pectoral, while I won’t have much range of motion, I’ll at least have the ability to hold my arm in position and not have it flop around like a dead thing. I had been trying to imagine what kind of pillow-and-strap contraption I would have to arrange in order to keep my arm in position to, say, type, but it looks like I’ll have a lot more stability than I thought.
I also asked for clarification regarding the prosthesis. If we weren’t going to see a significant return of function, or really any much at all, why did we wait MONTHS for this super sparkly 3D scanned highly tailored prosthesis? Menendez informed us that the part I needed didn’t exist otherwise. There was no such thing as getting it off the shelf. This or nothing.
And then, because I was curious, he called in the guy whose job it was to order it. He informed us it was ~$21,000 for the humeral head, and another ~$28,000 for the scapula itself. Uninstalled.
Woof.
I made them promise to get a good photo of it before it was installed, because I was going to print and frame it as the most expensive piece of art I own.
So, I’m glad we went. I feel a lot more sure of what to expect, and while it’s still not great, it’s better than I thought. But even Joe commented on our way out, “Man, you really have to pin that guy down.”
You do. We did.
Month: February 2017
My doctor appointments did not go well this morning. I’ve been waiting for the compensatory, ‘oh well it could be worse’ attitude to return me to normalcy, but the deep disappointment persists.
I’m not sure when it happened, but ‘It’ll never be quite the same as before’ (which to me sounded like stiffness, decreased strength and range of motion) has become, ‘You’ll never be able to lift your arm again.’
I had always envisioned them reattaching the muscles they had detached when they put the new piece in. My brother, the orthopedic PA, described to me how those replacements had rows of holes in them so they could sew the muscles back. But my surgeon says all those shoulder muscles are gone, not even because of the tumor removal itself, but because they had to remove everything along the corridor they made during the biopsy, in case it was contaminated.
The only thing I was told after the tumor removal was that I wouldn’t miss that piece of clavicle anyway, since it was only responsible for minor movements.
They’re not even going to sew in the new scapula. They’re going to pull some of the latissimus muscle from the back, and some pectoral muscle from the front (more damage, more disfigurement), and wrap the scapula up like a package. But none of those muscles will be connecting the shoulder to the arm.
There’s no amount of therapy that can fix that.
It’s not even just the scapula. They’re removing the head of the humerus to replace it with the metal part that will connect to the scapula. The metal joint will keep gravity from pulling my arm off, but is pretty much useless otherwise.
After all that.
I was not prepared for today.
Guess what’s been postponed again! My new surgery date is ‘sometime after March 1st’. Why? Because that’s when the plastic surgeon will be back in town to sit in on the surgery.
“The what?” I asked Connie, my surgeon’s NP, the one who always called with the bad news.
“We’re not sure we’ll be able to close the wound.”
“I don’t understand. It’s closed now. You’re going to be taking out the spacer and putting something back in that’s almost exactly the same size. There’s nothing wrong with the skin. How would you not be able to close the wound?”
“Well, we might have to pull in some skin and muscle from somewhere else during reconstruction, and that’s why we want the plastic surgeon involved.”
“I’m having a really hard time visualizing this.”
“Well, why don’t we set up a meeting with Dr. Menendez (the orthopedic surgeon), before your meeting with the plastic surgeon.”
“Ok.”
So after I got off the phone, had a good cry in frustration, and calmed down, I got to thinking more about what she was talking about. My visualization of ‘closing the wound’ just included having enough skin to cover it over. This notion was clearly inadequate. They hadn’t just taken out the scapula. They took out surrounding muscle and other tissue, and part of the clavicle.
Just as my eyes avoid the misplaced protrusions around the incision, my mind had been avoiding any more sophisticated understanding of the problem than, ‘well, they just have to reattach all the muscles to the new part’. But no, if they did just that, there would gaps, pitting, and nothing to protect the skin from the sharp edges beneath.
So fine. I get it. I should probably be grateful that they are arranging to have the plastic surgeon involved in the reconstruction, rather than splitting it up into multiple surgeries (ok typing that just gave me chills. That had better not be foreshadowing.).
Ugh.
So much dread.
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