Week 8

This past week has flown by. I've been walking around as normally as possible while wearing the draco shoe and yesterday I did a little walking at home without it. It's getting easier with practice but of course my foot gets a little swollen afterward. This weekend I went out without crutches! I had a nice lunch out on Saturday & Sunday and did a little bit of shopping! It was tiring but so worth it. I also spent a lot of time with friends; they're all so curious about the fixator but I don't show it to them because my scab makes it look worse than it feels (it's starting to come off on it's own finally!). 


My toe is still really straight even after having the brachytoe pin removed. It feels really stiff so I need to ask if therapy will help with that at my next appointment. Speaking of my next appointment, it is fast approaching. I'm set to have the fixator removed next week. I was a little nervous about it because it will be done in the office but now I'm ready to just get it out. Doing a little research on the removal process allowed me to get some peace of mind.


Per Wikipedia on external fixation: "Installation of the external fixator is performed in an operating room, normally under general anesthesia. Removal of the external frame and bolts usually requires special wrenches and can be done with no anesthesia in an office visit." 


This medical journal article shows that 95 out of 106 patients that had an ex-fix removed would do it again without anesthesia. Also, this youtube video shows an ex-fix being removed from the first metatarsal (it's not that graphic but be warned lol). In the video the patient says all she feels is pulling as her doctor turns the pins. This sounds promising, hopefully it won't be too bad  when I have it done ^__^.

Week 7

Just got back from my appointment and I have so much great news! My x-rays show bone growth! My brachytoe pin was removed! My bone stimulator is on the way! My fixator is coming off in 2 weeks!!

Here is my xray:

A sight for my sore eyes. Because of this my doc says that at my next appointment (in 2 weeks) the fixator will be removed! He looked at my scab and said that it looks great and not to poke at it, it will fall off on it's own. Then told me I can now get my entire foot wet! This means I can thoroughly and more comfortably scrape off the reptile skin my foot has decided to grow and it's now ok if the hardware gets wet.

Then he took out some gauze squares and placed them around my toe. He was talking about how most patients don't feel the k-wire (aka brachytoe pin) when he takes it out; at the same time he started turning mine and in 3 short pulls quickly removed it from my toe. It stung slightly for a millisecond but mainly felt weird/cool because you feel it in your bone. My toe bled a tiny bit; all in all it was no big deal and I got some pink gauze out of it ;)

As for weight bearing he said I can do what feels comfortable. I confessed to him that I started walking yesterday and he says that's fine as long as I'm not in pain. Yes, that's right I started slowly walking around yesterday without crutches and it was awesome if not surreal! The only downside is the swelling afterwards but I've been told it's normal. There's gonna be swelling for a while so I intend to keep my foot elevated and ice packed when not in use LOL. Also those purplish bruise-looking marks on my foot have gone away. Yay!

And last but not least there is the business of the bone stimulator. I received a call from the bone stim. company stating that my insurance would not cover it. They said it costs $3000 but they could sell it to me for $1000 at either a lump sum or 12 monthly payments. They also mentioned that they offer a financial waiver to cover the entire cost but you have to meet certain criteria. I'll be contacted by my doc's office when mine comes in :)

This past week went pretty quickly although my restless legs has been out of control. I don't take anything for it because exercise keeps it at bay for me so this must be due to lack of exercise. That won't be a problem for much longer.

Starting Week 6

Here's a picture of my final length @ 22mm. My foot is a little swollen from being out and about. The pin in my toe makes it straight so hopefully when it's taken out my toe will curve down slightly like the toe on my left foot. I fear it will be limp but I've been assured that it won't since my tendon has been adjusting this whole time. Also, I've been putting more and more weight on my foot while still using crutches. It's getting easier to do. 

It's a strange feeling having family and friends over and not covering my foot. I haven't been honest with them (the ones that don't know about my brachy). They just think I broke my foot. To this day I don't feel like I can be open about it which is sort of sad; creating this blog feels like a big step. Personally this confirms to me that I would have never gotten over it or embraced it. Even now...do I no longer have brachy because my toe is long? Am I cured? Can surgery be considered a cure if I can still pass it on? Nobody else in my immediate or extended family has it. I'm the only one. I've read about other brachy-people (<--I use this term for lack of a better word, a toe does not a person make) with siblings or cousins or an aunt that have it too. Not me. And honestly I'm not sure having a family member with brachy would have helped me feel any better. Having brachy wasn't my fault but I know I would feel so guilty if one of my nieces got it. They're too young to tell. But if nobody else in my family has it does that mean mine isn't hereditary? Did I suffer trauma to my foot when I was too young to remember which caused the growth plate to close too early? I did have some sporty accidents but nothing major... so which is it? Whichever it is my insurance covered the surgery so even if sometimes I struggle with the "why me?" mentality at least I can see how fortunate I am to be able to get it done and over with. Only I kinda feel like a sell out, like I should have been confident enough to be ok with it. That was never gonna happen. Ugh. Yep this is all the type of stuff that crosses the mind of someone with brachy. 

On a lighter note, every time I glance at my foot now I feel like I have too many toes haha! After years of only ever showing the first 2-3 toes in peep toe sandals this is definitely something to get used to :)

Needless to say, I'm so ready for this fixator to come off. There's no pain now, it's just bulky. Reading all the brachy blogs and forums I came across, I found that the average length of time with the fixator on is 89 days with the least time being 64 days and the highest being 110 days. My next appointment is over a week from now so hopefully that's when I'll find out when the fixator is coming off and hopefully it'll be soon! I want to be in that 60 day-ish range ;) Thanks for listening to my rantings.

Week 5 May 2012



I had another follow up appointment today. My x-ray shows that there's now some haziness in the gap! And it's forming in the width of the neighboring metatarsals which is so neat. The doc gave me the go ahead to scrub away at my foot with some soapy water and my goodness it felt so good. I made sure to keep the fixator dry and then lotion-ed the rest of my foot. He also said for me to try and practice with putting more weight on my foot. I tried a little last week but it was pretty nerve-racking. He elaborated on the sturdiness of the fixator and reassured me that it's not gonna cause any damage.

My foot still looks discolored but there's no pain. It looks like I'm bruised but there's no pain to the touch.  It's also pretty swollen still, hopefully that will go down soon to make it easier to plant my foot on the ground.

All in all the doc says I'm doing great and all we need to do is wait for more growth. As for the bone stimulator the girls at the office are working with my insurance company for approval. We'll see how that goes!

April/May 2012 Week 4


At this stage I am winding down on my distraction. To be honest I didn't think I would keep going through this past weekend because of the pain but I did. I kept thinking that I've already gone his far....might as well get the exact length I want! So today might be my last day to turn the screw depending on how my brachy toe looks at the end of today. My 4th followup appointment was at 27 days post op. They unwrapped my dressings and took xrays. The gap is almost 2cm long! The doc said everything looked perfect and said he was still going to leave in the brachytoe pin. He said they were gonna order my bone stimulator now and that I should start putting weight on my foot! I tried a little bit today but it's gonna take me a little bit to get the hang of it :)

My foot looks pretty bruised but it's because of all the distracting and stretching. This picture is at 18 mm. Almost done!