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 ^__^.
Tuesday, May 29, 2012
Wednesday, May 23, 2012
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.
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.
Sunday, May 13, 2012
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.
Tuesday, May 8, 2012
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!
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!
Thursday, May 3, 2012
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!
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!
April 2012 Week 3
My third follow up appointment was on Day 20. At this point my brachytoe has surpassed my pinky toe after 12 days of continuous distraction. The gap in the xrays is getting bigger and bigger! I still had the horrible pains but the painkillers kept it at bay. The doc instructed me that I can now start cleaning the wound with peroxide and betadine using q-tips and fresh gauze daily. This part is painless. Here is the pic for week 3.
I logged into my insurance website to see if my surgery explanation of benefits was available. It was! It showed as recently finalized at over $10K total billed charges.
As this is still recently finalized I'm not sure what my share is since I have not received a bill.
**Update**
I finally got a bill in the mail, my share is just under $500. I paid my deductible at the surgery center on the day of surgery so that was separate.
***Update Update***
Since my last update I have received more bills in the mail. The biggest is for the actual surgery center @ $40k. So in total the bills for the surgery center, the anesthesiologist, the anesthesiologist assistant, the surgeon (my doc), a surgeon assistant, the crutches and the darco shoe comes out to over $54,000 before insurance with my share at less than $1,000. Good thing I have insurance O__O.
Wednesday, May 2, 2012
April 2012 Week 2
My 2nd follow up appointment fell on the morning of Day 14 post op. By this point I was 5mm (1mm per day)! And this is also when I started to hurt. The first 3 days of distracting were fine. There was no pain and the screw would easily turn. On Day 4 there was more resistance when turning and immediately afterwards there would be a stinging pain throughout my brachytoe followed by 30 minutes of intense ache around the fixator area. The pain would come and go in waves: burning, aching, stinging and repeat. I started taking the painkillers again and it would help some but it would mainly take the edge off so I could relax and not be so tense. Don't be afraid to ask for more pain medication!
The morning of my appointment they unwrapped my foot and took xrays. The nurse came in and said that the nurse aide was going to remove my stitches which was good news because they were hurting/stinging. I told them what I was feeling the days before and they said the stitches coming off should help relieve some of the pain. The nurse aid was so nice and gentle! She took her time and I barely felt her removing them. There was a last stitch however that the regular nurse came in to take a look at and she snipped and removed it. That last stitch hurt so bad I could tell that was the one that was giving me trouble! After a while the stinging went away.
The doc said my foot looked great. I was surprised to see growth that quick. My brachytoe was now even in length with my pinky! In 5 days! So the doc wrapped it up and off I went :)
My 2nd follow up appointment fell on the morning of Day 14 post op. By this point I was 5mm (1mm per day)! And this is also when I started to hurt. The first 3 days of distracting were fine. There was no pain and the screw would easily turn. On Day 4 there was more resistance when turning and immediately afterwards there would be a stinging pain throughout my brachytoe followed by 30 minutes of intense ache around the fixator area. The pain would come and go in waves: burning, aching, stinging and repeat. I started taking the painkillers again and it would help some but it would mainly take the edge off so I could relax and not be so tense. Don't be afraid to ask for more pain medication!
The morning of my appointment they unwrapped my foot and took xrays. The nurse came in and said that the nurse aide was going to remove my stitches which was good news because they were hurting/stinging. I told them what I was feeling the days before and they said the stitches coming off should help relieve some of the pain. The nurse aid was so nice and gentle! She took her time and I barely felt her removing them. There was a last stitch however that the regular nurse came in to take a look at and she snipped and removed it. That last stitch hurt so bad I could tell that was the one that was giving me trouble! After a while the stinging went away.
The doc said my foot looked great. I was surprised to see growth that quick. My brachytoe was now even in length with my pinky! In 5 days! So the doc wrapped it up and off I went :)
April 2012 Week 1
My follow up appointment was on Day 5 after surgery. The doc unwrapped my foot; the gauze was bloody and my skin and nails were yellowish from the betadine they used at my surgery. Warning: the picture of my foot is a little gory!
They took xrays and said everything looked good! There wasn't much swelling or bruising (that's dried blood on the right side of the fixator). I realized that I had yet to use ice pack this whole time!! Oops! Just goes to show that the surgery itself is truly minimally invasive even though it doesn't look like it ;) Surprisingly there's also a pin sticking out of my toe. He says it's to make sure the tendon stays where it's supposed to which is fine with me because I don't feel it AT ALL!
The doc then brought out an allen wrench and made 2 full turns on the screw. I felt nothing.
He gave me the wrench and instructed that I was to start turning the screw 1/4 clockwise 4 times a day starting on Day 9 post surgery. This will be different for everyone, you must follow what your doc says to the letter. Also, compared to the other blogs and youtube videos I've seen my fixator is a little different. There is only 1 screw that needs turning and you cannot see it in this pic because it is at the tip end of the fixator. Also the pins in my foot appear to be pretty short compared to the fixators used maybe 2-3 years ago.
So..... they cleaned my foot up with peroxide, wrapped me up with gauze and the ace bandage and sent me on my way :)
My follow up appointment was on Day 5 after surgery. The doc unwrapped my foot; the gauze was bloody and my skin and nails were yellowish from the betadine they used at my surgery. Warning: the picture of my foot is a little gory!
They took xrays and said everything looked good! There wasn't much swelling or bruising (that's dried blood on the right side of the fixator). I realized that I had yet to use ice pack this whole time!! Oops! Just goes to show that the surgery itself is truly minimally invasive even though it doesn't look like it ;) Surprisingly there's also a pin sticking out of my toe. He says it's to make sure the tendon stays where it's supposed to which is fine with me because I don't feel it AT ALL!
So..... they cleaned my foot up with peroxide, wrapped me up with gauze and the ace bandage and sent me on my way :)
April 2012 Prep & Surgery Day!
To prepare for the surgery and my future disabled-ness I decided to read and dissect every single foot surgery forum I could find online! I got a temporary handicap placard for my car, bought a sweat-proof ice pack, a waterproof cast cover, this shower stool, this knee scooter, and this shower head with an attached hose to use while sitting:
My surgery was scheduled at 10am at an outpatient surgery center nearby. I arrived with my husband at 9am as instructed when the receptionist called me the week before and again the day before surgery. She said to not eat or drink anything after midnight, to stop taking birth control (to prevent blood clots), wear loose clothes and to arrive 1 hour early for paperwork and prep. They took me in, weighed me, did the urine pregnancy test and I changed into a cozy warm gown. Everyone kept asking me what I was having done in order to make sure I was the right person. I was given a purple marker to write YES on the foot I was to be operated on. Then they inserted the IV (this was my first surgery EVER and I was quite nervous) and the nurse said "this is the most you're gonna feel today". She was right because it just felt like a pinch. Then the anesthesiologist came in and gave me a "cocktail" haha! He and my doc wheeled me to the OR and I woke up after what felt like a nice nap with my foot wrapped up like this:
To prepare for the surgery and my future disabled-ness I decided to read and dissect every single foot surgery forum I could find online! I got a temporary handicap placard for my car, bought a sweat-proof ice pack, a waterproof cast cover, this shower stool, this knee scooter, and this shower head with an attached hose to use while sitting:
My surgery was scheduled at 10am at an outpatient surgery center nearby. I arrived with my husband at 9am as instructed when the receptionist called me the week before and again the day before surgery. She said to not eat or drink anything after midnight, to stop taking birth control (to prevent blood clots), wear loose clothes and to arrive 1 hour early for paperwork and prep. They took me in, weighed me, did the urine pregnancy test and I changed into a cozy warm gown. Everyone kept asking me what I was having done in order to make sure I was the right person. I was given a purple marker to write YES on the foot I was to be operated on. Then they inserted the IV (this was my first surgery EVER and I was quite nervous) and the nurse said "this is the most you're gonna feel today". She was right because it just felt like a pinch. Then the anesthesiologist came in and gave me a "cocktail" haha! He and my doc wheeled me to the OR and I woke up after what felt like a nice nap with my foot wrapped up like this:
My doc said everything went well! He told me not to get it wet or put any weight on it. They gave me this medical boot and some crutches. My husband and a nurse helped me change back into my loose clothes and helped me into a wheel chair. The valet brought my car around and I was back home by noon. I kept my foot elevated at ALL times and had zero pain! My husband picked up my painkillers and antibiotics at the pharmacy while I slept and I started taking them immediately as instructed. After around Day 3 I stopped taking the painkillers since I had no pain but kept on with the antibiotics until they finished :) Overall I saw that I was able to do everything on my own thanks to the scooter so my husband went back to work.
Hi! My name is Brachyfemme; I'm a twenty-something Texan girl who suffers from a condition called Brachymetatarsia. In short (pun intended): the 4th metatarsal on my right foot stopped growing in childhood which made my fourth toe (or "ring" toe as I've heard it called) appear to be a lot shorter than the rest.
Is brachymet painful? Sometimes. I love to run however after a couple of miles of running, the right half of my right foot goes uncomfortably numb probably due to uneven weight distribution. Also, I love shoes and almost all of them have material than run right across my lil toe and cause it to get rubbed raw :(
In addition to physical discomfort, this has stopped me from doing a ton of things. For example: Texas + Memorial Day= float the river. It's a blast but less so when everyone is wearing flip flops and you're wearing crocs or other hideous waterproof shoes. Same goes for waterparks, the beach, and swimming pools. Only my immediate family has seen my foot. Nobody else in my entire extended family has it.
Probably the most sadistic thing I ever did to myself was work at a shoe store surrounded by shoes I couldn't wear. Once at the store I saw a girl walk in with brachy on BOTH feet and she was rockin' those flip flops like nobody's business. If only we all had such confidence.
As I said, this is something I have been deeply embarrassed about my entire life and finally took the plunge and had the external fixator surgery 4 weeks ago today. I could've gone to Arizona to have Dr. Lee do the 1 step lengthening but I found an awesome doc close to home so I figured why not just keep it local ;).
Anyway I only have 1 clear-ish "before" pic of my foot due to I hated my foot and never took pics of it. So I'm posting it here so you can have an idea of what it looked like :)
Is brachymet painful? Sometimes. I love to run however after a couple of miles of running, the right half of my right foot goes uncomfortably numb probably due to uneven weight distribution. Also, I love shoes and almost all of them have material than run right across my lil toe and cause it to get rubbed raw :(
In addition to physical discomfort, this has stopped me from doing a ton of things. For example: Texas + Memorial Day= float the river. It's a blast but less so when everyone is wearing flip flops and you're wearing crocs or other hideous waterproof shoes. Same goes for waterparks, the beach, and swimming pools. Only my immediate family has seen my foot. Nobody else in my entire extended family has it.
Probably the most sadistic thing I ever did to myself was work at a shoe store surrounded by shoes I couldn't wear. Once at the store I saw a girl walk in with brachy on BOTH feet and she was rockin' those flip flops like nobody's business. If only we all had such confidence.
As I said, this is something I have been deeply embarrassed about my entire life and finally took the plunge and had the external fixator surgery 4 weeks ago today. I could've gone to Arizona to have Dr. Lee do the 1 step lengthening but I found an awesome doc close to home so I figured why not just keep it local ;).
Anyway I only have 1 clear-ish "before" pic of my foot due to I hated my foot and never took pics of it. So I'm posting it here so you can have an idea of what it looked like :)
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