Sunday, June 27, 2010

Brachymetatarsia Surgery is Getting More Popular By The Day!

I found this girl out of Spain! Amazing how years ago there was little on Brachymetatarsia.midedocorto.wordpress.com
© Anita G. www.midedocorto.wordpress.com

This is an 18 year old girl who used a doctor who had never done this surgery before. And he had to account with a second surgeon, and a third party who knew more about external fixation. Together, they honed their skills to get this done for her.

Her external fixator was on for a very long time! (I had a consultation and I was told something quite different. I'll have to find out if it's due to her doctor's inexperience or US doctors just being too much in a hurry. ;-) I will be posting all I was told by Dr. East soon!

Anyway, she tried walking successfully for the first time with full bearing-weight on her foot, on her 105th day! On her 110th day, the fixator was removed.  This is quite recent, but so far she is very happy with the results. ;-) YAY Anita!

Friday, June 25, 2010

INSPIRATION— Susan's Story


© Institute for Limb Lengthening &
Reconstruction - © Daniel Mendelson
In my research I've come across some interesting videos. This was one of the good ones.

If Brachy was my only condition, I would at least get a consultation here.

If you search on YouTube for Brachymetatarsia or similar conditions, you will very quickly realize someone out there has it much worse than you. It's always good to remember, "You are well in so many other aspects of life." Thinking on this often is how I'm able to wear exposing sandals to the post office or while I walk my dog. ;-)

Life just isn't that bad, at least we have feet. I try to keep my condition in its proper perspective as much as possible. I'm not 100% up about it, but I'm not usually down about it either.

These photos do me a world of good. As I looked through them I felt so very happy for each of these people. They were far worse off than me, but that's not why I felt good. I felt happy for them, that they finally received the reconstruction they needed to live better quality lives. Happy, because they look so happy.



I was amazed at how old one of the patients was! I mean, she lived so long with her malady. Hallelujah! You're never too old to live better! We may see little difference in some of these photos but to them and their doctors, there is a world of difference.


Enjoy!

Sandal Season

So yeah it's sandal season for the rest of the world. But for people with Brachymetetarsia, it's: sweat-in-your-closed-shoes season. ;-) Those who don't have this just don't know, Sorry ;-( 

Friends and loved ones can be kind, and look at our feet and say, "It's just not that bad." And for the most part I get that. I mean, it's how I feel when someone else offers up their own physical impediment to me. While I can truly understand about personal unique pain, many times I feel their dilemma isn't that bad. Not insulting, just that I don't feel as badly as they do about their condition.

So I get it when people close to me have said that. I understand. I know from what vantage point it's being said. However, on the other hand just try putting a Brachy-foot (a WOMAN'S Brachy-foot) in a delicate sandal! Yeah, those same nice friends wouldn't trade places with you for all the tea in China! ;-)

Those of you who don't have Brachy, well you're in for a treat. You'd normally never see this because we keep it hidden, but I'm all about offering up some treats—in the name of opening up some understanding. (If you've seen my first post, you'll know this is not my foot.)

 


All I'm saying is, it takes some guts!
So kudos to this lady.














Meanwhile you're standing next to someone who's sporting this!


Just a little hard to compete. While my 'comparison-days' are over (thank God!), I'm at the point where I'd like to not live in physical pain AND wear a delicate sandal for once in my life, thank you. ;o)

Choosing— Podiatrist vs Orthopedic Surgeon

In 1999 I began looking into this. (Once I found out there was actually a name for this.) There was a doctor out West that seemed to dominate in this surgery. Now, there are more surgeons [in the east] listing on their website that this is a surgery they can perform. (but as of 'right now' I feel he still dominates, let's see if that changes.)

I am learning that not all Brachy-surgeries are created equal. Podiatrist seem to dominate this surgery when Googling, compared to Orthopedic surgeons. In 2008 I did reach out, via email, to a Podiatrist here in the East. He was kind enough to answer back via his blackberry. For the most part he was upbeat and ready to have me come in whenever I felt comfortable. I could in no way take 3 months off from work, per foot, for these surgeries, so I left it at that.

With the possibility of maybe working remotely for my company on the horizon, I am now looking into finally getting my feet reconstructed. I've done a descent amount of homework. I started off favoring the "West" doctor, (I favored his Experience) but I know I should get more than one opinion on my conditions. That's when I put the "East" doctor on my radar as well. My plan is to have a consultation with both. Dr.West will have to be by phone. BUT his office has already sent me a preliminary packet to know the steps required for a phone consultation, all that is involved to fly down for the surgery, the stay, etc. For right now I am working on getting to them a packet of all the forms and insurance information they need. I have to send xrays and photos too. Then I will be able to meet with him by phone and ask all my questions.

Dr. East is a little easier. He's local. In fact, I have already met and had my first consultation with him. For now I feel he is nice, but my decision won't be made upon niceties. I don't think he is as experienced in Brachy-surgery as Dr. West. But I may not be able to stay in the West for the moths of post-op. My employer is having its shaky times and I can't afford to be jobless. Going out West may be a bit too much to ask. Going and staying for that period of time proves quite challenging with a dog in toe as well. ;o)

The question of Podiatrist vs Orthopedic surgeon in uniquely mine as Brachymetatarsia is not my only condition. I also have bunions and bunionettes to add to the mix. There are claims that Podiatrists do lousy jobs on bunionectomies compared to Orthos, but I've read the opposite as well. To me my findings were equal. I've looked up the difference in their education requirements, law, etc. Because I have Brachy with my bunions I have decided to go with Podiatry. (If I had Bunions alone, I would have a consultation with both a Podiatrist and an Orthopedic Surgeon.)  

I feel both doctors on my radar (Podiatrists), have the opportunity to do good work. But which one will do the best job? Once I have a consultation with the 2nd podiatrist I'll have to decide

Tootles! Smile, Jesus Loves YOU! ;o)


Getting Xrays Proves Difficult

I will document all I can so that those of you considering surgery, won't have to be as lost as I was/am in doing these things as a first-timer. (I mean how many times do you actually do this in life?)  ;-)  I don't want you to feel alone. Hopefully by following my blog you won't feel that way.

I've done research off and on for years and am reasonably sure of the surgeon who will perform my surgeries. (more on that later.) He is not local. Therefore, I have to get xrays taken here and send then to him.

I want to tell you that getting someone to take my xrays has proved very difficult. Once I explained what I was doing, what I needed the xrays for, I was rejected. I called several offices and they all said "No".

I then called the surgeon I plan on going to ask for help, to see if he had a solution. I discovered they pretty much expected me to have this difficulty (would have been nice if they would have told me that from the get-go) and recommended I just make a consultative appointment with a local podiatrist and not share my plans.

I had xrays taken this week. Not only was I surprised at the severity of my bunions, but the podiatrist was as well. (Dr. East—more on him later) I carry my bunions well I guess, but the xrays show quite a severe case.  

Anyway, I'm hoping that I can document all I'll go through so it can help somebody out there. I know the information is needed because when I went searching 10 years ago there was barely nothing available. And now you get sort of just bits and pieces here and there online. So I'll be as transparent as I can.  Thanks for following! ;-)

LEFT FOOT
These are my xrays. (digitally done)
© DNC -
www.brachymetatarsia.blogspot.com



RIGHT FOOT
(The "Normal" xray on the right, is not my foot.)
© DNC -
www.brachymetatarsia.blogspot.com

Friday, June 18, 2010

My Brachymetatarsia Journey Begins

(GEES THIS TAKES GUTS. OY.)
By now you have a good idea of what "Brachy" is, so I'll move on to my personal view and experience. I've lived with this for 30+ years. It has affected a few women in my family. My Aunt, my father's cousin, my sister, and my cousin. In our family it starts at about 7yrs of age, when the 4th metatarsal bone (inside the foot, not inside the toe) stops growing. It seems the skin continues, but not the development of the bones.

I'm used to it by now. I don't wear flip-flops or open toe shoes on dates or anything, but when I walk my dog or have to make a quick run to the post office, I grab my favorite "brachy-sandals" and go. (I like them best because they hide my bunions. ;o) I don't feel 'shame' as some Brachy-ers do, but I don't think one should feel shame for feeling shame, if that makes sense.


My Brachy sandals


Family and close friends have seen my feet, so no big deal. But what bothers me at this point in my life is that I can't wear a nice low-heel, feminine, strappy sandal. I just want to do that. That is what has lead me to my final decision for correction.

As an artist I'm use to being the quirky one so this sort of fits for me I think. ;o) Growing up it did do damage to my self esteem, and as an adult I discovered it did play a reasonable role in my lack of social skills. There were no pool parties, walks on the beach, sports (locker rooms), pedicures, sleep overs, shoe shopping, etc. I avoided being involved in anything that would even have the chance of exposure. Kids can be cruel. (Let me explain that I went to 13 different schools. I was always the new kid. And was bullied because I was a new target. That being said, I never showed my feet as to not give the bullies yet another reason to pick on me. So with every move I started from scratch again. I never had a chance to develop long-term friends to build trust with.)

Anywhoo, I work in Manhattan, and before the real hot weather hits, all the girls are pedicured and flip-flopped— so are many others who don't care for their feet in the same way. I've had a front row seat on the subway to some amazing deformities. So I look at myself and figure I'm just not that different. Many have it far worse than I. Someone in a wheel chair would give their right eye to have my feet and legs. So in that context, I no longer feel cursed or emotionally bothered as an adult.

I have other blogs and if you sift through them you'll realize I'm not consumed with my feet. But this blog IS about my experience with Brachymetatarsia so it will seem all consuming as you read it.

At this point, a bit of a door to have my feet reconstructed has cracked open. It might be possible that I may be able to work remotely from home in the near future because my job has been piloting this now for 6 mo. Without this, the reconstruction will not be possible. I must work. I don't have the luxury of not earning an income for the long post-op needed for recovery.

© DNC - www.brachymetatarsia.blogspot.com
My feet are completely flat. No arch. In fact, so flat that they act like suction-cups on humid days in the sandals above. ;-) My problem at this point in my life is the physical pain caused not only by my Brachy but by the two bunions on the inside and the two bunionettes on the outside. I nurse my inner bunions now-a-days by avoided 80s-like heels. But even when I wear flat closed shoes the pain from my bunionettes is excruciating.

© DNC - www.brachymetatarsia.blogspot.com
I also have thick calluses on the bottom of my Brachy foot. In my sandals, my feet just don't look that bad from our birds-eye view. But from a healthy podiatrist vantage point— they are an absolute mess.



So here starts my new journey! ;o)