Hey, you guys.
Hi!
It's nice to meet you.
Thank you guys for traveling all the way to New Jersey
to visit me.
Yes.
I'm so excited to meet you.
Same here, same here.
So you being up here is for a very special reason.
I learned about your syndrome in school.
But never in my life have I met a person with it.
Wow.
I know these things have to hurt,
but I want to hear about what your life is like.
It's tough.
I have the days where I can't get out of the bed
and I'm miserable.
There's been times I've begged my mom
and my dad to take me and get my feet amputated.
Stop.
Because I can't.
The pain is so bad.
It felt like my last resort.
I mean, obviously I didn't do it, but, you know?
Yes, for sure.
But I'm just tired.
So I'm super interested to see what you've got going on.
All right, we're going to pull down safely on this heel.
You OK?
Yeah.
I'm going to take off these socks very, very carefully.
With Olmsted syndrome, there is nerve
hypersensitivity, meaning, like, everything is amplified.
You OK?
Yeah.
So I have to be really careful taking off
her shoes and socks because every pull
or pinch on this callus--
it sends her lightning bolts up her-- up her leg.
All right.
Very, very, very carefully.
Good?
Yep.
OK?
Mm-hmm.
These are not normal calluses.
Weird.
- Kind of crazy. - Yeah.
Yeah, I'm not going to lie to you.
In Rebecca's case, the nerves are actually
inside the callus, encapsulated by all this hardened skin
tissue.
So her skin is super sensitive.
I can feel that.
Super painful?
Yes.
When you're pushing on the sides like that.
You know, so what do you do to maintain things?
I just use a scalpel, and I go at them.
But those spots with the nerve endings
or that I know that are going to cause pain--
I can't cut them.
Gotcha.
I have to be surgically put under to get those--
To excise them completely.
Mm-hmm.
Since I've gotten older, I've been
able to maintain it a lot more myself without having to have
the surgeries every six months, but going under just--
it killed me.
It did so much on my body.
And I don't want to have to keep going through that.
You have a huge nerve pocket down here.
You have a huge nerve supply that comes in this area,
but you have one that comes to your heel.
This one that I think that comes to my heel
is the one that shoots up my legs.
Yep, that one makes sense.
Because that pain--
I can't even describe that pain.
It is--
Like searing.
Yes, yes, yes.
I would like to get some of this off today
to try and help you at least walk a little bit more
comfortably and to try and, you know, keep this at bay
so you don't have to keep on going back into surgery.
You know, hopefully, you know, there
is a solution out there long term that we see down the road.
But until we get more research on your condition,
we kind of stick with the basics and kind
of build off of that, OK?
Olmsted syndrome is still being researched.
It's still evolving.
And how much we know about it is evolving.
But unfortunately, there is nothing out there
that says we can cure this.
I know I can get rid of the calluses,
making her more comfortable day to day.
But I want to make sure that I don't cut too deep
and hurt her.
Are you wanting to work on all of my foot or just, like--
I want to make your life better so when you walk out
of here, you have less pain. - OK.
You know what I mean?
What is the most painful for you?
Right now, my heels.
OK, so we'll do that.
So, OK.
You're nervous.
Yes.
I can see you shaking.
Take a deep breath, babe.
Don't worry, don't worry.
I'm not going to hurt you.
No, I know.
I know.
It just happens.
It's a lot.
Asking Rebecca for permission to try
and take these calluses off while she's in the office today
is scary.
And Rebecca's nervous, like, super, super nervous.
She is watching over me like a hawk.
So it's just water?
Lot of water?
And we'll start, maybe, on the closest area to you.
You can kind of-- you can see layers, right?
Absolutely.
So if you just go at it with that layer,
you can probably just go straight down, but.
Exactly.
The pressure of you doing that will hurt.
OK.
But I'll let you know.
All right.
Slow and steady.
Small, little segments.
Nothing crazy.
I'm kind of having the blade do the work, OK?
You OK?
Mm-hmm.
I'm trying to stay in that one platform.
It's this finger.
Oh, this guy that's putting on pressure?
That's a little uncomfortable.
I'm pulling on that area.
I know it.
I see your toes over here curling with me.
Every swipe, it's like you kind of clench.
Every cut I make, I am so worried
that Rebecca is going to pull back and flinch and tell me
that I got a nerve.
Pain?
Hold on.
I can't-- I feel it everywhere.
I'm right in the middle of my office procedure
with Rebecca for Olmsted syndrome.
I'm taking off these calluses piece by piece,
but Rebecca is so sensitive that I
had to kind of adjust for that in the middle of the procedure.
So I'm checking in with her every step of the way.
Not hurting?
No.
OK, I'm getting a good piece over here, my friend.
Yeah, I know.
It's like new skin under there.
That's a great piece over here.
That's awesome.
Well, it's exciting when you can get big pieces off.
Good.
She's getting areas you can't get to.
Yeah.
You're going to be very excited about that one.
Look at that.
That's a nice-- nice chunk.
Thank you.
We're cooking with gas now.
[MUSIC PLAYING]
That was a good piece too, right?
Yeah, it was.
You have real trouble getting to this side, right?
Could I have you rotate your heel
and I'll try and get that down for you?
Yeah.
You're like a ninja.
Look at how flexible you are.
You're doing really good.
Thank you.
There you go.
Good job.
I love that you're cheering me on.
Wow. Right?
Wow.
That was good.
Oh, I can't believe how much she's gotten off.
Look, it's almost flat.
It is.
You OK?
Mm-hmm.
You ready to rotate?
Yeah.
Rebecca and I-- we spent some time on her heels.
We had to twist her feet in many directions
to get the calluses really, like, kind of chipped away at.
Oh gosh.
All right.
This is it, my friend.
You're getting it.
I am.
Probably like two more little cuts and you got it.
One.
Two.
Uh-oh.
Should we do it in three?
Oh, maybe four.
Four is my lucky number.
Is it?
Oh!
Look at that.
That was a big one.
That was a really big one.
Wow.
Sarah was listening to me.
She was concerned.
And she-- it was so genuine.
And that is so important to me, being a patient,
being a person.
And I thought that that really helped our relationship--
our patient, doctor relationship a lot.
I'm very excited to be part of your care
and to create a treatment plan going forward.
You have no idea how honored we are to hear you say that.
It's-- we've been hoping for this day for a long time.
You're doing-- you're so good.
I'm so proud of you.
And this-- this is steps to recovery, right?
Look at how much better you are, even just, like, sitting here,
you know?
Olmsted syndrome is challenging, to say the least.
It's still being researched, but I'm totally on board for this.
So don't you worry, girl.
We got this.
OK.
Don't worry.
Meeting Sarah was great.
I am happy I came today.
Those are happy tears.
Yeah, these are happy tears.
Oh my gosh.
Wow.
Yeah, that's pretty close to, like, what
it's like after surgery, too.
Yeah, it sure is.
Dang.
This is something that keeps recurring because
of the syndrome, so I think we should
do more treatments like this on a more regular basis.
I want to make sure that that side doesn't
have a chance to regenerate.
If we can keep it at bay, maybe can almost trick
your body into not throwing it.
Right.
I'm so excited to see if we can
really get a hold on this thing and give you back your life.
Yeah.
OK?
It's my pleasure.
Seriously, it's my pleasure.
I will-- I'll touch base with you in a couple of weeks?
- OK. - OK.
- OK? - Sounds good.
Thank you so much. - Of course.
Of course. Thank you.
Meeting Sarah was great.
It couldn't have come at a better time.
Meeting Dr. Sarah-- it's the best thing that's happened.