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Tuesday, October 10th, 2006 07:41 pm

Kudos

HUGE KUDOS to [livejournal.com profile] rfrench for preparing so well for this appointment. We brought a synopsis of everything that had been tried so far, a copy of my X-rays from 12/2003, and all my MRI films. Big kudos also for coming along with me and thinking of questions I didn't think to ask.


First visit inspires confidence

This doctor took the time to look through the synopsis and said, basically, "hey, you've already been really thorough here; you've tried all the obvious stuff". He was very thoughtful, obviously applying logic to the problem, and he was very willing to talk to us about his thoughts.

He also mentioned a couple of times that my case was unusual in various ways. This is reassuring; if he saw me as "just another ________" I'd be pretty sure he was wrong like everyone else.


Mechanical problem

Like my first podiatrist, he too seems to think that there is basically a mechanical problem underlying all this.

1) He notes that I'm very flexible (I have "ligamentous laxity" aka double-jointedness) almost everywhere EXCEPT in the middle of my foot where the metatarsals meet all the little bones of the midfoot, where I am remarkably rigid. If I were flexible there too, he says, my arches would have collapsed long ago and my foot would be a pancake. He guesses one of my parents comes from double-jointed flatfeet and the other comes from people with high rigid arches. Anyhow, this combination of rigidity in one place and hyperflexibility everywhere else leads to the angle of the long bones in the foot ("metatarsal declension") being markedly high, stretching out the flexor tendons and the plantar plate (the structures showing damage on my MRIs) and grinding the ball-of-foot joints into the ground harder than normal as the foot rolls during walking.

2) I also don't have a good transverse arch. Several doctors have noted this. Correlating with this, he can tell where I bear weight from my calluses; on the ball of the foot behind the big toe my skin is as soft and smooth as it is on the top of my foot. That should be taking a bunch of the load and it isn't.

3) I also have almost zero padding under the metatarsal/phalangeal joints. Most people can't count their forefoot bones by feel from the bottom of the foot. I can.

Interesting side notes on the mechanical stuff:
- My calves and Achilles tendons AREN'T tight any more. Guess that's what I get for wearing shoes with a low heel and raised toe for a year. (He says he's never before met anyone who has worn those shoes for a year.)
- I also don't pronate any more. I had no idea it was possible to train oneself out of it, but apparently wearing these shoes has done just that.
- My forefoot varis isn't unusually high/large any more, either.


First Theory

He has a "first guess" as to what's going on. He taped up my foot and asked me to tell him what hurts more, less, or differently, and those results will confirm or refute his theory.

He theorizes that my plantar plate is in the process of being destroyed, and that if I weren't so darn flexible, it would have ruptured long ago. People have a lot of pain when it's stretched and pounded. When it tears, which usually happens very soon after the onset of symptoms, they are suddenly pain-free (and massively prone to toe dislocations). I still have pain because, his theory says, mine simply hasn't broken under the abuse. In three years.

If his guess is right I'm not sure what can be done. (I asked. HE doesn't yet know.) There's a surgery to help stabilize the toes of people who have the tear. (I hope I don't need that. It involves wrapping a tendon from the bottom of the foot over the top of the toe to hold it in place. This does not inspire confidence for a long lifetime of running and square dancing and backpacking.)

The tape he put on each foot is keeping my second and third toes from bending back. If this theory is right the pain should decrease while wearing the tape. I have to try it without my post-op shoes, of course. Barefoot or in regular shoes will do it.


Other Things To Try

He has ordered blood work to rule out systemic problems such as rheumatoid arthritis, lupus, etc. He considers this unlikely but worth checking for peace of mind.

He has also found me SHOES! I have long suspected that the two benefits of my post-op shoes were 1) leaving the heel low when I stand, so my forefoot isn't bearing much weight, and 2) not allowing the toes to bend back when I walk. These shoes do both those things. (Doctor handing me brochure: "I've been waiting forever to find someone to give this to.") I have not yet gone to try any on; it is quite possible, even likely, that they don't come in wide, which means there's absolutely no way I can ever wear them. But hey, it's a really good thought.


Tentative Results

Walking down the hall in sock feet I notice that the pain has moved dramatically. Particularly on the left foot, where I feel the tape is more aggressive in holding the toes down, the pain is suddenly under the ball of the FOURTH toe... an untaped toe. It's a pretty bad level of pain, too. Under the second and third toes there's little to no pain, at least in such a short walk. That's a very dramatic result. I don't have a good memory of walking in sock feet without the tape (I'm no dummy! I don't DO that any more!) so I'll try that in the morning and compare.


To Do Soon

Get blood drawn
Write up detailed impressions of tape versus not tape
Try out MBT shoes
Order MRI report for Dr. Cornelison
Bring in all previous orthotics for Dr. Cornelison


Summary

I like his attitude. I respect his obvious intelligence. I am heartened that there are more things to try in an effort to diagnose this.
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Wednesday, October 11th, 2006 03:22 am (UTC)
Hooray for good doctors! It sounds like this guy is interested in actually solving the mystery. I hope the shoes come in wide.
Wednesday, October 11th, 2006 03:37 am (UTC)
Fingers crossed! At least he might have a fighting chance of solving it. He clearly has a brain.

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Wednesday, October 11th, 2006 03:27 am (UTC)
I hope the shoes come in wide - or that you can wear mens shoes which I think are wider.

Really glad you found a doctor that wants to help!
Wednesday, October 11th, 2006 03:39 am (UTC)
Not only does he want to help, he might also be smart enough to help. I hope.
Wednesday, October 11th, 2006 03:38 am (UTC)
I am cautiously hopeful that he is open-minded and listening to what you have to say. Fingers and toes crossed that his good ideas keep coming.
Wednesday, October 11th, 2006 03:42 am (UTC)
I'm cautiously hopeful because of that too. Plus he gave all appearances of being smart, which I am guessing is going to be needed.

Toes crossed is what happens when the plantar plate rips! Wheee, my toe is over THERE now! :-)
Wednesday, October 11th, 2006 04:03 am (UTC)
I think that covers all the important points.
Wednesday, October 11th, 2006 04:28 am (UTC)
Thanks.
Wednesday, October 11th, 2006 04:26 am (UTC)
Sounds like a very good start. I do hope that he turns out to be a whiz at puzzles!
Wednesday, October 11th, 2006 04:28 am (UTC)
Oh, I hope so too!
Wednesday, October 11th, 2006 04:30 am (UTC)
And cautiously hopeful as well. Let us no about the tape/no tape test in the morning. Enquiring minds, you know?
Wednesday, October 11th, 2006 04:38 am (UTC)
Awesome start! I hope he can help you!
Wednesday, October 11th, 2006 05:04 am (UTC)
Thanks! Fingers crossed.
Wednesday, October 11th, 2006 04:43 am (UTC)
This sounds encouraging!

Hugs!
Wednesday, October 11th, 2006 05:05 am (UTC)
Yeah, I do (Deity help me) have some hope again. Not that there's a good cure if this is what's happening, mind. But hey. It would be stunningly wonderful to have a solid diagnosis.

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Wednesday, October 11th, 2006 04:59 am (UTC)
Wow! Sounds like you finally found a good doctor! I've had doctors in the past who looked at problems like a puzzle, as you describe. I remember taking Meredith to our family doctor when she was about 12 or 13 and had a problem with her hands, and the doctor couldn't figure it out right off so she said, "I'll be right back. I'm going to check the 'weird book'." It's wonderful when a doctor admits they don't know something instead of trying to bullshit their way through it ("There's nothing wrong with you, it's all in your head", "I'm The only thing we can do is put her out of her misery", etc. Image ) and they do further research to find out what it is.

Unfortunately I don't have any doctors like that now. No matter what I say to my rheumatologist he just throws more pills at it, and my current PCP is useless -- I don't even have confidence that she'll send me to the right specialist for something unusual, let alone treat me competently herself.

So I'm really thrilled to hear you found a good one!

I looked all through that shoe website ... they sound very interesting! I wonder if they'd help me with my problem (because my right knee joint is so badly damaged, that foot hits the ground at a very odd angle). The testimonials on the website sound great, but I'm always skeptical about anything that resorts to testimonials. However if a good doctor is recommending them, that carries much more weight with me! There's a store about 45 minutes from here -- some time I'd like to go out there and try them on and see if it feels like they'll help.

I'm eagerly awaiting further reports of how you're doing!
Wednesday, October 11th, 2006 05:07 am (UTC)
Ugh. I'm sorry you have doctors who aren't actively "puzzle-solving" for you.

The way the doctor talked about the shoe, it sounded like it was good for very specific kinds of problems. If those happen to be the problems you have, then great! (I too am wary of anything relying on testimonials.)
Wednesday, October 11th, 2006 05:40 am (UTC)
Wow that sounds really hopeful! Fingers crossed ... toes ... um ... left alone! ;)
Wednesday, October 11th, 2006 03:20 pm (UTC)
Heh, yes! :-)
Wednesday, October 11th, 2006 05:44 am (UTC)
I would be thrilled that his initial experiment caused the pain to MOVE. It can CHANGE... and hopefully GO AWAY, with the right tricks. Crossing my fingers for further developments....
Wednesday, October 11th, 2006 03:21 pm (UTC)
I find that very hopeful as well. What a concept!
Wednesday, October 11th, 2006 05:53 am (UTC)
Yay! The pain moved! This is good stuff. I feel it in my [metatarsal] bones...

I'm rooting for you.
Wednesday, October 11th, 2006 03:22 pm (UTC)
Yeah, the pain moving is a very good sign. It means there are things that can be done to affect it at all. YAY.
Wednesday, October 11th, 2006 08:22 am (UTC)
Wow. I'm really delighted that you're making progress on this. Happy birthday, you. :)
Wednesday, October 11th, 2006 03:32 pm (UTC)
Thanks! Now I can't decide whether I hope his theory is right (YAY DIAGNOSIS FINALLY!) or wrong (YAY NOT SOMETHING DIFFICULT OR IMPOSSIBLE TO FIX!).
Wednesday, October 11th, 2006 08:51 am (UTC)
Wow, sounds like such a promising doc! Great news! And real new stuff to check out and try. Yay for intelligent competent determined doctors!! And so nice to hear your long painful foot saga is taking a positive optimistic tack! :)
Wednesday, October 11th, 2006 03:33 pm (UTC)
When I went in to see him I wasn't at all expecting him to come up with a guess. I figured he'd take the history, think for a while, and come up with a different doctor's name. This is intriguing.
Wednesday, October 11th, 2006 10:15 am (UTC)
Cool. I was hoping you could find someone who would have more things to try.
Wednesday, October 11th, 2006 03:31 pm (UTC)
Yeah. This isn't huge amounts of hope, yet, not by a long shot -- but it's definitely some. It's a new theory with new ways to confirm or deny it.
Wednesday, October 11th, 2006 11:48 am (UTC)
He sounds great!! And hopefully will find a solution! :)
Wednesday, October 11th, 2006 03:34 pm (UTC)
I sure hope so. At least he doesn't seem like the kind of guy to give up without an answer. Cool icon! What a fun-looking painted bejeweled foot!
Wednesday, October 11th, 2006 12:55 pm (UTC)
Oh, I'm so glad this doc has ideas. Sound like good ideas, too. He read your entire case (woo-hoo!) and didn't just lump you into his favorite category (double woo-hoo!).

Fingers crossed for you, my dear.

When do you go back and see him again and report the taped-foot findings?
Wednesday, October 11th, 2006 03:35 pm (UTC)
Yep, I really think he's not looking for a fast answer so much as he's looking for the right answer. This is a huge win. I wonder why he alone, of many docs I see, is able to do this. The economic pressure against it has to be large.

Two weeks.
Wednesday, October 11th, 2006 01:27 pm (UTC)
I'm so glad you've found a good doctor! And hey, those potential new shoes are cool!
Wednesday, October 11th, 2006 03:38 pm (UTC)
Don't they look nifty? I'm a bit put off by some of their marketing copy ("Oh, we're not CLAIMING it will take off your cellulite, but..."). I suspect people are tricked into wanting more out of the shoe than is really there. But for my kind of foot problem it does look very promising.
Wednesday, October 11th, 2006 01:55 pm (UTC)
This guy sounds like a good one. Obviously, I truly hope everything works out wonderfully. But even if the steps he can take are small ones (no pun intended!), I'm glad you've found someone like the new doctor.
Wednesday, October 11th, 2006 03:38 pm (UTC)
Thanks! I agree: even if he can merely get me closer to a real diagnosis, that's better than I had before. He doesn't seem the type to be willing to settle for a wrong answer.

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[identity profile] jupiter29.livejournal.com - 2006-10-11 06:49 pm (UTC) - Expand
Wednesday, October 11th, 2006 03:09 pm (UTC)
YAY for good doctors!!! Woo!!

Can't wait to see what he finds.
Wednesday, October 11th, 2006 03:39 pm (UTC)
I'm *so* looking forward to more things to try and maybe more answers! Naturally I did a pile of reading on the web last night, and now there are several tests I'm hoping he'll order. :)

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Wednesday, October 11th, 2006 05:07 pm (UTC)
wow - sounds like you really lucked out with this guy! hope he manages to pull something off.
Wednesday, October 11th, 2006 09:28 pm (UTC)
Thanks! Rob found him for me. Rob has a joint problem for which two doctors recommended two totally different procedures, so he searched for a tie-breaker; that was this guy. After his appointment he came home and said "I bet this doc could help you."
Wednesday, October 11th, 2006 07:26 pm (UTC)
Isn't it comforting to get a new doc that ISN'T and idiot?! Good for you!
Wednesday, October 11th, 2006 09:26 pm (UTC)
I so hope my initial good impression is really all true! Thanks!
Wednesday, October 11th, 2006 08:15 pm (UTC)
I'm so glad that you are the sort of person to take a consumerist approach to your medical care. I love that you shop around and have learned not to waste effort with unsuitable doctors.

I hope this guy can help you.
Wednesday, October 11th, 2006 09:26 pm (UTC)
It took me way too long to learn to do those things. Now I want Consumer Reports to review California Bay Area podiatrists.

Thanks!
Thursday, October 12th, 2006 01:47 am (UTC)
R foot with tape 2d day:
- "twangy" ache on outside of calf, fading after I paced a bit
- ache halfway down second toe, seems to be on medial side of first phalanx/phalanx joint (tape-angle-related?)
- I can walk in sock feet pretty fast
- occasional twang in plantar arch, could be tape pulling
- tried getting up on "tiptoe" (ball-of-foot version), couldn't get very high due to tape, can cause some pain if I hang there for a second or three

R foot without tape 2d day: (all this was done *after* the previous)
- occasional outside of calf ache still there
- definitely more achey under ball of foot (which toes? 2-4 ish, I think) but not a lot of pain even now
- tiptoes FUCKING SUCKS (o'course I can get higher)
Thursday, October 12th, 2006 08:51 pm (UTC)
Hope he keeps having ideas! The tape/no tape difference looks fairly dramatic from here.
Friday, October 13th, 2006 09:57 pm (UTC)
It certainly is intriguing. I got the blood drawn this morning to rule out systemic inflammatory diseases, this weekend I'll look at the shoes, and... well, fingers still crossed!
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