October 19, 2015

Shock and Repair: This Dancer's Knee Surgery Journey 3

I am still in shock. This journey to knee surgery has not been a roller coaster. It has been a cyclone. 

I'm barely holding my bearings right now, standing right between two huge and important appointments, and am snatching both my breath and the moment to write a brazen update so you don't get lost without me.

Here's what's happened since Part 2:

  • I had an MRI taken on the right knee, which is damaged the most of the two.
  • I met with my primary doctor who had ordered the MRI, who then, upon reviewing the results, referred me to an orthopedic surgeon.
  • I met with my "top 10 in the field" orthoscopic surgeon.

And then my world fell apart.
Surgeon's are not known for their bedside manner. That wasn't in my head when I was waiting to see him, but I wish it had been. Not only that, but I'd been referred to one of the top specialists in the nation, yes, but I had no idea about that at the time. I found out much later. I really, really wish I had known it going in.

Why? Because being ready for rudeness, arrogance and flippancy from a doctor - and knowing it's not personal (because their skill is universally known to lie in their hands, not their communication skills) - enables one to get what they need out of an appointment. I know how to deal with nissies just fine, but I had been lucky up until now. No nissy doctors yet. So the massive wall of his nissy-ness hit me like a brick in the head instead, when he finally walked in, three hours late. It ended up stunning me when I least expected- or needed- it.

But that wasn't the worst part. The worst part is that he and I entered that room with two completely different understandings:

I entered that room believing the appointment was a pre-orthoscopic surgery consult - as in scope surgery. "Three little holes," remember? I hadn't seen the x-rays or MRI's for my knee yet. My primary doctor went over the radiologist's report with me a bit, reading aloud about a tear in the meniscus, like I'd expected, a severe wear in the cartilage, like I expected, and bruising of the bones, which-  okay, I was not expecting. 

She also mentioned that my bones weren't aligned correctly, but that wasn't surprising either, since they felt exactly like that during the choreography for Walk Like an Egyptian as well as these last 6 months of salsa dancing. It explained a lot of the locking up, the giving out, the falls, etc. 

I walked away from my primary's office and into my surgeon's office thinking that everything I'd expected had been confirmed. It was definitely time for a scope surgery. I thought it would be an easy pre-consult. Let's schedule this thing! I thought. 


He, and his intern, entered the room believing I had been given the really REALLY bad news, that, uh, I was way, way, way, beyond, beyond, beyond scope, basically. They thought I had actually seen my x-rays, my MRI's and had been told what they all meant - as in "point and show and tell." None of that had happened. These guys thought I was way past that. They thought that, not only did I know how bad it was, but that I had come a long, long way to finally meet with the best of the best because I had a really, super-unusal case. (I was super young with super awful knees.)

So they thought I knew exactly what was going on inside my knee. Bluntly: they thought I was there for a full….. gulp!…. replacement!!!! Nothing could have been further from the truth. I wanted my three little scars! That's it! We were coming from two different worlds.

This lead to many an upsetting misunderstanding. For example, they ended up believing and writing down that I was gung-ho on the idea of a full replacement. As in, 'give me a major surgery now!' when I wanted the exact opposite. I avoid major surgery like the plague.  But that's what happens when two definitions collide. Every time the world "surgery" was said, I meant "orthoscopic" and they meant "full replacement."

Imagine a doctors appointment where each of you is speaking a different language, but neither of you realizes it. A complete, total and utter train wreck of a disaster. It lead to such conversations as the following:

Intern (during check-in): Have you had injections yet?

Us: Injections?

Intern: Honestly, that'll probably do it. The surgeon is pretty conservative. He doesn't need the money, you know? He only does surgery on those who really need it. He makes enough money that he doesn't need to, you know, do back to back surgeries all the time.

Me(starting to panic a little) No - no surgery? Wha----? But. But. I waited too- I don't have ---- I- I can't walk. At all.

Intern: You want a conservative doctor for things like surgery, don't you? Look. I'm just going to tell you what I think is going to happen. He's not going to go for the surgery. What he'll do, I bet, is give you an injection today, wait three months, and then see how you're doing and re-evaluate it then.

Us: (full panic now) THREE MONTHS!?!?

Intern: We don't want to do surgery if you don't really need it, right? (Are you kidding? Did you look at my stuff? I'm the perfect candidate for this surgery!) In fact, I'm just going to get it all set up for an injection right now. (He walks over to cabinet and starts pulling out needles. Big ones. Our eyes go wide like saucers. What the heck are those???)

Me: Oh my God!!!…. Threeeee months!?!?! (I commence shaking, as I emit some kind of eerie wail/shriek/whimper)

Now. The intern didn't like our reactions. Obviously. He thought we were weeping, moaning and nashing our teeth for a massive scar down my leg and 3-6 months of recovery. Um. No. That's not what we wanted. We were weeping and wailing at the idea of putting off a simple scope surgery which has no invasion and no down time - and would not just solve the inflammation issues, but everything else that was wrong with it.

Train…. wreck. If only! If only one of us had said the actual term "orthoscopic" or "full replacement" instead of just "surgery." It would have prevented so much pain. Here's another train wreck it caused:

Surgeon: (Sits down and says quickly, with a wave of his hand that said, "let's just get the easy stuff out of the way first") So. Scope obviously isn't a good surgery for you. With all the cartilage gone, it would just be counter-intuitive. (Another quick wave of the hand) And I don't think you're a good candidate for cartilage repair either. There's just so much gone. And you're so young. So young! Sooo young!!! How did you do this?

Me: -----I --- I'm out of options?!? Surgery is out? I'm not a good candidate??? I can't-? I can't have surgery???

Surgeon: What? I didn't say that. I don't know how you got that idea!

Me: Because you just said, "You're not a good candidate for scope." That's what you said, right?

Surgeon: (Look of total shock. Places hand on my shoulder: extreme pity. I was still utterly lost at that time, but he wasn't anymore. He now knew I had been sitting there expecting scope. He couldn't believe it. At all.)

Not a great appointment. Awful, in fact. Lots and lots of train wrecks. It didn't help that they don't actually use the words "knee replacement surgery" themselves. They just say something like "reconstruction" instead, or "revitalization" or some such nonsense. I'm sure it's so that they can keep the sting out of it for us patients somehow, but in my case it just made for a terribly confusing, painful and shocking visit.

I left so shell shocked and (frankly) abused, that it took a full week of rehashing the office visit over and over in my head as well as with Nick to finally realize what had happened. And it's taken another full week for me to be able to write about it. 

Believe me, I've tried to write you about this before now, but I couldn't get past a single paragraph every time. (Before I forget - I wouldn't have figured any of this out with having had Nick there. If you can, always bring another person with you to a doctors appointment. "Another set of eyes and ears," as the nurses say, has always proved to be more than worth it in the end - every single time.) 

Anyhow, despite all of the rehashing and the long, long days I've had to process all of the things that were said and done in that visit, I'm still not sure if I've got it all down. Am I'm making sense? Lord, I hope so. And in that hope, let's move on. 

Here's how the heart of the visit went.

Us: Wait, what's a "revitalization?" (Sorry, I just can't remember the fancy term he used for it.)

Surgeon: It's where we reconstruct the knee- but- you're just too young for that. 

Us: Wait- what!? A knee replacement!? Are you talking a knee replacement!?!?

Surgeon: Of course. All that's left, but- What's your age again? Right. So young. 

Me: (I have never been so angry about being called so young so many times before!)

Surgeon: The age we want is 50. We like to wait until you're at least 50 before we even consider that option because they just don't last. These replacements are the shortest out there. Maybe 10 years or so.

Us: 10 years? We thought it was 20? It's only ten!?

Surgeon: Yes, 10 years before we go in for a "renovation" procedure. (Another weird term I didn't catch, with another wave of the hand that said, "oh you know - that ol' thing." Oi. I had no clue. It sounded like a procedure where they go in and replace parts - like replacing parts on an old car.)

Me: So, that's it. I have to have a total replacement, but I'm too young.

Surgeon: No, you're not a good candidate, like I said. You're so young.

Me: So I have no options. No options at all.

Surgeon: Well….

Me:  I'm hearing you say, right, that I'm not good for scope, I'm not good for cartilage repair and I'm not good for replacement, correct? (I'm calm, counting on my fingers, trying to be clear about all this, without revealing the melting cosmos within my chest.)

Surgeon: Uh. (Stare. He apparently hadn't thought this news through before he delivered it.) Here. Take this card. I'm referring you to the cartilage repair unit.

Me: But you don't think I'm a good candidate.

Surgeon: Well- no, I don't, but I'm not them. They're the experts. If they say no, then here's Cyndi's card and you can see her whenever you like for injections. But you can't get injections yet. They ruin the cartilage for repair harvesting. Only go when the repair unit says they can't help you.

Us: (What the WHA…???)

Are you thinking what we left thinking? Did he just basically say… 10 years of injections? Well, injections for another 10 years if I don't "qualify" for cartilage repair, which I really won't, so… 10 years of injections! Bada boom! The tear stays. The misalignment stays. The falling stays. The canes, walkers and wheelchairs stay. But the swelling goes down. And NO dancing. He specifically said that! "Noooooo dancing!!!"


(Melting cosmos.)

Cartilage Repair

What's cartilage repair? They go in, take a sample of your cartilage, grow it using stem cells in a petrie dish, and then reattach the extra cartilage back onto the cartilage where it's the thinnest in your knee. Note: they have to reattach the newly grown cartilage to cartilage - not the bone, like you'd expect. Which means you have to have enough cartilage in your knee to do this thing. 

That's the problem, though. I don't have much cartilage left. He's says that's why both heads of the bone are bruised so badly - nothing is preventing them from crashing into one another with every step I take. It made me think of my primary doctor's visit, who had walked in with the results of my knee's imaging looking very grim. Her first words, I suddenly remembered, were, "Well, at least you have some cartilage left…"

Now I knew what she meant. She had known it was bad, but didn't want to say just how bad it was, especially since she didn't have any of the images in front of her to show us. She knew we expected scoping surgery, and she said scope could work, but she wasn't completely sure. She wanted an expert's opinion. And boy did he give us one!

Anyhow, the next appointment I go to in this saga is with the Cartilage Repair Unit.

If it sounds advanced, it is. Only two places in the country do it, I believe. I'm praying to God I qualify. In the meantime, I'm on a mission to find out what the heck is actually going on in my knees. When I meet with the repair unit, I'm going to ask to see everything - the x-rays, the MRI's, everything - and have it all explained to me.

In the orthopedic surgeons office, they had all of these amazing drawings, charts and diagrams of the knee joint in the orthopedic surgeon's office. If I had the wherewithal to have stopped the appointment and said "You sound like you think I know what's going on in my knee, and I clearly don't. Please show me on these charts," then I'd be way more stable than I am now.

I'm not going to make that mistake again. I can't hear another declaration about my knee without being able to understand that declaration first.

It wasn't all bad, though. He had a clear about-face in attitude half way through the visit, like I said. It occurred when he realized, before I did, our different definitions of the word "surgery." Once he realized I had been expecting scope surgery, his face filed with compassion and he touched my shoulder. This wasn't a girl gung-ho for serious surgery - I was just the opposite.

This softness allowed me to finally learn some things. For example, I learned that the bone bruising was not from a fall, like my primary had suggested. The bone bruising is from the bone on bone action occurring without any cartilage left. I learned that the meniscus tear is probably the least of my worries. I learned that knee replacements only last 10 years, not the 20 every says they do. And I learned that there was no way to wrap the knee that would help.

I've learned even more since the appointment? I've learned that these things are genetic. My mother had a full knee replacement surgery in her 60's from a tennis injury that occurred in her late teens. I never considered it before because she had her hip replaced on the same side first. I thought that affected the knee. Yet here I am. Bam.

If sound bitter because I am. I had never heard of any of this information before. My primary doctor didn't say anything about replacement. And none of my swing buddies had talked about that stuff before either… until now.

Because you can bet your butt I called every last one of them, Ten or not, and was like, "What the hell." And that's when I learned everyone's getting injections, with a little extra on the side. As one so delicately put it, "How'd you think we thought up the vicodin and Crown?"

Sigh. Okay. So maybe I did know more than I thought. Just not all of it. Not the part I needed to know. I so wish I'd known about the knee replacement part instead of the Codon & Crown part. 

So my loves, this is no longer a "Knee Surgery Journal" - ah, wait! It might be. I'll let you know how the Cartilage Repair Unit turns out.  But here's the bottom line: orthoscopic surgery was only an option for my 20's, boys and girls, no later. And it's cartilage you need to worry about more than anything else.  

So when you hear the cracking, or the salt & pepper shaker sounds when you take the stairs - do yourself a favor, and get your but in the specialist's chair. Sooner, rather than later.


I also learned orthotics could have prevented 50% of the wear in my knees. Do you hear me!? 50%!!!! And I'm talking orthotics made by your podiatrist, not at a dance convention or ones hanging on the wall of a drug store. I waited 10 years to get my orthotics when they first came out, and that has cost me everything. Everything.

Go to a real specialist: a highly rated podiatrist. Get your feet cast and pay the money to get inserts for all of your shoes - heels to sneakers. And wear them. By God, wear them!!! Women hear my call! Your knees go first! Men, save yourselves pain and injections - get your orthotics, real orthotics, and save yourselves a life of woe.

(And... bow. Stepping off my podium. But it was a damn good sermon, right?)

Good night, and good luck.
Love to you all,
I still don't regret it.
They were some of the best years of my life.
(And that's saying something.)