12 February 2013

What the doctor said...

Today I had a phone consultation with my health plan's orthopedics guy to discuss my diagnosis.

I had a massive list of questions for him and was anticipating him to be a pompous, disdainful jerk. I based this on his online reviews. What I quickly realized once we began talking is that smart doctors appreciate well-informed, energetic, proactive patients. On the flip side, smart doctors tend to be a little dismissive and impatient with patients who don't really take care of their bodies. This guy is a smart doctor. And I am his perfect patient.

(all quoted dialogue is not necessarily directly quoted!)

Right away he said, "I'm not sure if I should give it to you straight...or if I should sugar-coat it a little."

"Give it to me straight up," I told him. "I don't mess around."

He laughed.

Then he got serious and said, "Your hip is done."

He proceded to tell me that there is no evidence of cartilage in there...it's a bone-on-bone situation. I am lucky that I am thin and active and fit and healthy...and "obviously very energetic."

I asked him about getting an MRI. "No need," he said. "The damage is done. There is no repair surgery to do. There's essentially nothing left." He went on to say that I had not done this to myself...I had done nothing wrong.

Then we talked about what I've been doing for the past 2+ years. He was floored. And not annoyed or frustrated or scolding. "I'm not going to tell you to not do anything," he said. "You can keep doing the things you want to do with the comfort level that works for you. The only thing I suggest is that you please don't wait until you've been inactive due to the pain for months and lose your fitness and your positive outlook to get the surgery. Being strong and positive will be critical for you to do well. Keep that in mind!"

He said running is not the best choice. Rowing is fine. Cycling, elliptical, pretty much anything except running...but he's not going to tell me to not run. "You'll know if it hurts too much...you can't make the condition worse," is what he basically said.

Based on my x-ray, he had wanted to put me on his surgery schedule immediately, but after talking with me he feels that would definitely be premature.

"Radiologically, you're a mess. Clinically, you're amazing. I can't say when you will need the replacement...or when you'll want it. But when that time comes, I'm here."

And we wished each other a nice day.

So now I begin setting up appointments to talk with various providers about treatments to help keep me strong. Physical therapist, chiropractor, acupuncturist, naturopath...I'm building an team.

If anyone has dealt with this and has some great ideas for me, please let me know in a comment or email!

Many thanks to RockStarTri and The Unexpected Runner for all your advice and willingness to share your insights. And many thanks to all of you, my generous and thoughtful readers, for your kind words and enthusiasm for my journey yet-to-come!

Anyone have personal experience with prolotherapy?
–this treatment option has me intrigued...



34 comments:

  1. I would write 'Clinically, you're amazing' on a sheet of paper and put it on your fridge!! And maybe start shopping for a good bike...they're so much fun.

    Seriously, I'm so sorry about the hip being done. Is he talking about a hip replacement? Would that enable you to run?

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    1. He is talking replacement down the line. He said that while you CAN run with it, it is ill-advised because it shortens the life of the "device." There are only so many "cycles" in the mechanical joint, and running would use those up more quickly.

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  2. Don't know if you feel the same way, but in the past I have always been glad to hear "You can't make it any worse," no matter how bad it is, because at least then I don't have to worry about what I'm doing & feel guilty. There is something (a little?) freeing about knowing that the limiting factor is your comfort level / pain tolerance.

    Good luck!!

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    1. Definitely somewhat freeing! Thanks!

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  3. I want to tell you to get the hip replacement, but I know it's not my place. But thing is, my mom (although now 69) was told several years ago that she needed one, but she should wait because she could tolerate the pain, and now she's barely able to walk, and recovering from the hip replacement now will be a far more lengthy process than if she had had it done when she was originally diagnosed with osteoarthritis in her hip. Ok. Climbing off my soapbox.

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    1. I'm still super active and not in much pain at all. It was sort of a freak thing that led me to even get the x-ray finally...I just happened to have the time and was curious :P The doc said to not wait until I was miserable but to wait until I noticed a distinct negative shift. The fuse has been lit, just stop it before the bomb blows. I do appreciate your input, though.

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  4. Well he sounds awesome. Wish I had some advice but I don't. You're going to totally get through this!

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  5. My MIL has recently started prolotherapy for arthritis in her hip. No results yet (as far as I know) but she's early on... and I'm sure she would be happy to talk to you.

    As for the rest of it... Bummer about your diagnosis, but glad to hear you got a good doc. And now you know why your hip was hurting!

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    1. Yeah...now I know!!! LOL

      Definitely keep me posted on your MIL. Is she local?

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  6. The surgery is no joke for sure, but i WILL say that after my (active)dad had it done he said he was sorry he'd waited so long.

    Your doc sounds awesome. Best wishes to you down whatever path is next for you!

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    1. Thanks! And I do for sure understand not wanting to get to that "wish I hadn't waited" place. I do still feel good for now. Who knows how long that will last? :)

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  7. the key to that surgery (ask about the new anterior approach that has less than 15% chance of post op dislocation in the years after and less muscle disruption from the actual procedure... smaller incisions as well)... anyway, the key to that surgery is indeed your rehab. you must find a very progressive PT that udnerstands your history and your future highly active goals--your energy, your stick-to-it-ness, and etc... I'm a PT (not in your area) and i LOVED working with post-op total hip clients who had big goals (one guy returned to softball at the world senior olympics circuit, another person to skiing vail every day there was snow (rich, retired, old guy skier still tearing it up)... etc. then get after it.
    as to when to get the surgery... just like he said... wait as long as you want, but not until you're debilitated and have knee pain and back pain and ankle pain and etc because of all the gimpin' around you're doing. technology and techniques keep improving... in 15-20y if you need a 2nd replacement, they'll probably just laser it in there or something. :)
    my understanding of prolotherapy is limited, but seems that it is most successful when trying to "shore up the border" of a ligament or disc with scar tissue... not so certain that it would help with the missing cartilage thing... don't be afraid to ask your ortho his perspective or if he's what he's seen on patients that have had it (scans or in surgery or otherwise). good luck! love your blog. i'm sorry about this relatively large bump in your road, but don't be afraid to climb the hill adn fly down the other side! :)
    kristin z (or)

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    1. Thanks so much! It is really helpful to have your input! I will keep all of this in mind :)

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  8. I like how this doctor sounds... very realistic and straighforward. I don't have any specific (or useful) advice for the hip, but I do agree with the others that rehab is going to be the #1 priority, and being strong and healthy will help SO much. (This is what I've learned from my experience recovering from 2 leg surgeries.) Also, it's advisable to brace yourself psychologically for the rehab process. It will suck and take longer than you want it to, but I'm 100% certain that you'll overcome this. Best of luck!!!

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  9. You must be so overwhelmed right now- so much news, so many decisions. I'm sorry! I have read up on prolotherapy and I think it's worth a shot. But it is probably not covered by your insurance, just heads up.

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    1. Tell me more about what you know about the prolotherapy. At this point, insurance covering it is not a factor.

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  10. I love doctors like that! Sounds like he had a sense of humor, which is always good medicine no matter the actual diagnosis. I have no advice, but it sounds like you're doing all the right things and I know your attitude will pull you through this.

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  11. Sounds like you found a good doc that you can trust! You are lucky...it can be hard to find one that you mesh with. Yay! Did you row yet???

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  12. Bummer about the hip. Get it done before it hurts. Factor in arguing with the insurance companies and wait times. The devices are getting better all the time. If you wear this one out, you can get another, and it will be better.

    Yes, I've had prolotherapy in my knee for a diagnosis of a small tear in my medial meniscus. I'm assuming you know the theory behind it, promoting healing by irritating the body and making it deal with that. I was a bit nervous about it, thinking I was going to feel the grit in my joints. Not at all. The needles are very fine, and it didn't hurt. My knee felt full afterward, and a bit stiff, is the only way I can describe it. I had 3 treatments. My knee doesn't bother me at all now. Did the prolotherapy do the trick? I don't know. I did a boat load of other physio stuff, and dialed way back on the workouts for a while.

    You will have to ask searching questions of the prolotherapist about what the body will do if there's nothing there for it work on. There are related treatments, platelet rich plasma, at about 5x the cost. And I think another one that I can't remember the name to.

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  13. Wow - sorry to hear about your hip. Sounds like you have a good doc, though. My advice to you - keep moving for as long as you can - and then get the surgery done. One of my good friends had both her hips replaced and she is now doing great.

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  14. Sorry to hear, a real bummer this. Unfortunately I don't have any advice. All the best!

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  15. Nice conversation last night. Keep us posted.

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  16. My husband had one hip replaced at 40 years old. He did not have constant pain, definitely regular "catches" and was not much for moving faster than a walk. He actually thought he should wait longer to have it replaced. I told him he was in good shape (6ft 180#, fit) and should consult an ortho surgeon. PT was HUGE and very valuable. Almost 2 years post surgery, he is thrilled with the results and was amazed at what he can do that he did not realize at the time he was not doing. I know this is a ramble, but the surgery was a lifesaver.
    Sandra

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  17. Been lurking forever and not posting. Please know that you're thought of (in a positive way)!!

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  18. Wow. XL... no cartilage left? Ouch!
    But it sounds like your doctor was pretty knowledgeable and reasonable. That's a plus, right?

    I look forward to following along with your rowing adventures :)

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  19. Thinking about you!!! Keep on being strong!!!

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  20. I like doctors who tell it like it is and don't just assume I want the sugar coated version. Glad he was able to give you a clear picture of the situation and let you decide when the time is right. Continued prayers for less pain while pursuing your active lifestyle even if running might be less of a part of it.

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  21. Bummer on the doctor info. Though my opinion is that it's always better to know than to not know. Just based on what I've remembered from your comments, sounds like you may have hurt it around 10 years ago? You said you took an 8 year break, then have recently been back at it. Though really it probably doesn't matter how it happened. Like I said in my last post, hopefully you are able to figure out what activities to do best. Prolotherapy may be worth looking into, seems like it has helped people in the past.

    And unfortunately I've been having some left knee pain again recently, I may need to cut back or stop running for now and in a couple months either get a MRI or figure something out. The doctor visit I had a couple weeks back didn't seem to go well. He was saying that I may have a problem with my meniscus not having much cartilage left, which is not a good thing to have.

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  22. I am following your blog closely as I am having the same experience...but in my right foot (especially big toe). Absolutely no cartilage left. You are an inspiration!

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  23. I'm 40 and have recently had the same experience (I had my x-ray three days after a 15k in November). "at least moderate" in the left hip and mild to moderate in the right. My Dr also told me he would not tell me I couldn't run - but I stopped. Between that and a good chiro/PT I am pretty much pain free at this point. I can now feel it(I get "stuck") even when I walk "hard" on the treadmill for 3 miles. My problem is that I can't feel pain when I am running/walking, so have never known when to stop.

    Hoping for baby #2 so no drugs or cortisone. Just going to keep being kind to the body! (and work on losing the last of the baby weight!:)

    Love your blog!

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  24. Having the doc be impressed with what you have been doing and calling you clinically amazing is pretty dang cool. Of course we've all known you're amazing way before the doc, but I guess it's official now :-).

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  25. so behind on my reading-glad you found a doc that you trust...quickly reading to catch up...

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