IamA 18 year old with an electric bone stimulator implanted in my ankle! AMA!

What exactly is a bone stimulator and what does it do?

A bone stimulator is a device used to promote bone growth if the bone has shown signs of non-union. It can be worn outside of the body, which I tried for about five months without success or it can be implanted within the body which has a higher chance of success. It sends very small electric shocks from the battery pack through the guide wires into the bone which creates micro-fractures within the affected area which seems counterintuitive but it actually stimulates an increased blood flow which helps to heal the fracture.

So basically your body doesn't want to do anything about the major bone problem so you are making little problems that it will deal with? That actually doesn't sound that counterintuitive when I think about it lol.

Right, for some reason this massive fracture seems like to much work so by creating a whole bunch of teeny tiny ones the job suddenly seems much more obtainable.

So it sounds like your body has taken on Agile Methodologies when it comes to work needing to be done.... (no one else will get this... I just had to say it to make myself laugh).

That went over my head... Even after googling it haha

Basically Agile is a method of project completion that focuses on taking one large task and breaking it down into incremental parts that are easier to complete. Much like the micro-fractures in your foot (micro-fractures are easier to complete then doing the big job all at once). Sorry. This had nothing to do with anything. LOL

Gotcha haha

Isn't there a risk of ankylosis with a treatment like this? Are you doing anything to prevent that?

I have dealt with a ton of stiffness and very limited range of motion in the joint for my entire life. Unfortunately, right now in an effort to get this dang thing to heal, I am unable to do any sort of stretching or PT because we don't want the bones moving around at all. Its going to be a hard road to recovery after the boot is removed and I have to start walking again.

Kind of like how lifting weights tears your muscles a bit, but then they heal stronger than before?

Exactly! When you break and bone and it heals you are very unlikely to break it in the same spot because it heals much stronger than ever before.

i believe the version of this that can be worn outside the body is called an exogen bone stim machine, at least that's what i think it's called in the UK, i encountered one of these at work last week and was wondering if it's the same as what you've got going on. looking at some pictures it looks like something you'd buy from a late night shopping channel...

There is a version that is worn outside the body, I tried one for about 5 months, wearing it for 10 hours a day and it wasn't as effective as the internal one is proving to be. It is a very large and cumbersome piece of equipment though.

Wow, this is an interesting AMA!

My question may be tactless, but if you don't mind, did your health insurance cover your procedures? The emotional trauma of all this is enough without adding financial anxieties.

Also was it difficult to get in contact with this renowned surgeon? Did you have to wait for his availability?

Good look with your recovery.

My health insurance actually refused to cover the internal stimulator because they see it as "needless and unproven" despite the fact that my surgeon has placed over 50 of the with a lot of success. So he had to figure out a way to code the procedure so that they thought they approved it. It was a very sneaky thing. They did cover the majority of the cost for the 3 surgeries but I was stuck with a good amount of the bill. I had to wait for a bit while trying to get into see him but my mom knew someone who worked in the same foundation so it helped. He was very interested in the case so that helped too. Thank you for your well wishes!

Hi! Let me wish you a quickly healing and a happy pair of same length legs n.n

So here's my question: Does it hurt?

NINJA EDIT: That's already answered, so my new question is: what are your feelings/thoughts about this? I mean, your healing and your future after this. Greetings! <3

The stimulator does hurt just because it stretches the skin on top of it and it has caused some bruising. It also sometimes shocks me and I can feel the electricity shooting through the wires which is really bizarre. My feelings have changed many times throughout this process. I was very excited to get the first surgery done because it took me a very long time to find a surgeon who was willing to actually do the procedure. I was expecting a 3 month recovery and to be able to work as a lifeguard over the summer but my main goal was to walk across the stage at my HS graduation without a boot or a cast. That didn't happen so I decided to become more positive and really have decided to be as positive as possible and just to roll with the punches and take life as it comes! Thanks for the well wishes!

First, thank you for doing this... Up until you posted this, I had no idea this condition existed...

Secondly...I want to know what is the long term solution? Hopefully after this corrective implant you are through with surgeries? Or do you sadly have to keep enduring as you have for the past six years of surgeries..

Lastly... Can you like press a button and make that thing tingle inside you on demand?

Edit: the last question was supposed to make you laugh...TIL I suck at sarcasm.

First off, thank you for taking the time to respond. Secondly, there is no long term solution. It is different for each person effected by the condition and what kind of procedure they have gone through. I elected to go with a partial fusion, which means the remove the joint spaces and screw them together which removes the ability for the bone to create friction which causes the pain. Right now I am unable to move the foot in a left to right motion. I also had a tendon transfer done in one of my toes which helps because clubfoot causes shortened tendons. I also had my calf lengthened and a four inch screw placed up through my heel to anchor the fusion in place. If these surgeries do no help as much as needed, I could either get my ankle completely fused which means I have no motion in any direction or I could have the foot amputated, and amputation would be the route I would probably go. Lastly, no unfortunately I do not have a button, the stimulator works 24/7 for 6 months and then the battery dies and I will have it removed because it is uncomfortable.

I would imagine that with modern prosthetics you might have more stability of your "ankle" after amputatuon. Crazy to think about it that way.

That is my thinking exactly. If I cannot function with the real one then its gotta go and we can get a state of the art fake one that will allow me to be an active person. Its such a bizarre thing to think about though.

I was hoping I would a little remote that I could control the buzzing with but I just got stuck with a boring 24/7 deal. I appreciate your sarcasm, I am a very sarcastic person myself haha

Hey there. Did you want your name mentioned? I think they're on your X-Rays if you didn't.

I didn't even think about it, thanks for the help haha, I'm new at this whole posting thing

Thanks for doing this AMA, I was just wondering how the healing process was going? When do you think you'll be fully out and about again?

Absolutely! I will do anything if I think even one person could be slightly helped by hearing my story. Initially I was told it would be a 3 month recovery period which would have been great. I have now been in a boot or a cast for over 11 months straight. I plan on being out of a boot within the next two months but will be back in a boot over the summer once I have the stimulator removed. It will be a very long process to relearn to walk because my ankle is now screwed into a position I have never felt before and my muscles are very atrophied from disuse.

Stay strong OP, I am going through something similar and even though the recovery seems never-ending and painful, we'll both be better off in the long run!

Its been a mentally exhausting endeavor but it has given me so much when it comes to how I view the world and the struggles other people face. I truly consider myself very lucky when I realize that all I have to deal with is a bum foot when some people struggle to open their eyes in the morning. I thank you for your kind words of encouragement, and I wish you all the best in your recovery, if I can ever be of help to you please let me know!

Was this surgery performed by an orthopedic surgeon? Or another kind of doctor who specializes in electronics within the body? Nice hardware, might I add.

This surgery was performed by an podiatric surgeon. One of the most world premier podiatric surgeons I might add, he has worked on gold medal olympic athletes, Warriors basketball players and other pro athletes who travel from throughout the world to see him. Thanks! I kinda like the hardware, its pretty cool, until I have to go through an airport, then its a pain in the ass.

Wow! That's freakin' awesome. I'm glad you were able to find such a highly touted podiatrist. One of the orthopedic surgeons that I work under is actually the hand specialist for the Raiders and Warriors. I wish you the best of luck with your recovery!

It has been a life changing thing for just one person to be willing to do what it takes to help someone who really needs it. Random question but do you work at Palo Alto Medical Foundation in Palo Alto CA? If so this could be a very weird coincidence...

That's what we're here for. Compassion and care is ALL I KNOW. But i'm actually located in Oakland at Websters Orthopedics. Small world, huh?

I only ask because one of the surgeons that works down the hall from my surgeon is also someone who works on Raider players. You truly don't even know what it is like to be in constant pain that ostracizes you from your friends growing up because you were unable to do things because of crippling pain. After going to PT and being told I was "one of the most screwed up people let alone kids I have ever seen" and going to innumerable surgeons just begging them to try and help just to be told to be thankful for what functionality I do have and to scram, finding someone who was able to help honestly will change my life in ways I think some people in the medical field sometimes do not realize. It has just added more fuel to my fire in wanting to become a nurse to be able to hopefully make an impact on someones life someday.

Oh my god! I'am so happy that you have been motivated by your life experiences, instead of discouraged by them. Not only have you climbed this mountain of a problem, but you're also planning to move that mountain on your own. You just gave me strength. I thank you for that. As for those doctors and physical therapist who have seen you in the past and not done everything in their power to help, shame on them. They didn't deserve to help you anyways. Matter of fact, doctors like them do not deserve to practice at all. Please go to school. Become a nurse or a nurse practitioner. Your determination and ambition is exactly what the health care field is in dire need of. Too many inconsiderate bio science majors transfer into the health field with one thing on their mind, money. Please, dont ever give up on your dreams.

After struggling throughout my childhood, and having to deal with people that refused to help, I have made it my mission in life to be someone that can be a resource to people not someone who points out the obvious problem without a plan to help. I am currently working on my prerecs for nursing school so hopefully within the next few years I can help those who don't have a voice to help themselves.

You rock! I'd be honored to work with you in the future. Goodnight, Friend.

Goodnight! Thank you for your contribution to this AMA!

Wow we are scar buddies! I was also born with a clubbed foot, my left foot is a UK size 6 and my right is a UK size 3. It's so difficult buying shoes! My brother was born with both feet clubbed and he is in serious pain now as he was treated with plaster cast whereas I had quite a few surgeries to correct this when I was young so I'm not so bad. This is really interesting, do you know if it's something they do in the UK too? I worry I would be too late to do this as I'm 29.

Good luck with it all and thanks for doing an AMA!

Is there a genetic component to this? I've never heard of siblings with club feet.

Is he older and the technology/medicine changed so much between his childhood & yours?

Does he hate you for having an easier life? Do you feel guilty?

I assume there is in my family. My dad had both feet clubbed too but less severe than mine or my brothers.

My brother is seven years older than me so I think there must have been some medical advances. Also, I had surgery (mid 80's) as mine was so severe and my tendons were so short, whereas his was only treated with plaster cast and boots (late 70's). I have a lot of scars and half a calf muscle but I'm in no where near as much pain as him.

I do feel guilty sometimes but he's never let him hold it back so not too much. He's travelled extensively, has a great paying job and a extremely active social life. I don't think he looks after his feet as much as he should have , he used to wear flip flops a lot which probably buggered up his feet a bit more.

I imagine he will probably have his feet fused at some point as the OP has had, I'm hoping not as it sounds awful but if it helps.... I guess it could be a good option.

It's funny, I never used to know anyone apart from my family with clubbed feet and now I work with two people who have children with it too. I wonder if it's getting more common?

My dad feels guilty for "passing it down". My twin had bilateral club feet meaning both were clubbed but was treated with serial casting and has no residual problems whatsoever. Its hard to see how much function she has and how much this problem has effected me but I don't resent anyone for something that cannot be controlled.

Ah so there must be a genetic link then. I can only imagine how difficult it must be to see a twin be fairly mobile in comparison. I don't think my brother resents me either as I just had surgery on both knees last week, completely unrelated though. Just bad luck and one of those things you have to deal with to get better. I hope this works for you and that it's not too painful. Very interesting topic, thanks for doing this AMA. You sound like you have a great attitude towards it, my very very best wishes to you.

My best wishes to you as well! I hope your knees heal up quickly and you are back to fighting shape soon!

I did this AMA not expecting to be able to "meet" so many people in similar situations because I have never met someone with this condition in my life other then my dad and twin sister. It does have a genetic factor to the disease and it is also very common in twins because it can be caused by a lack of room in the uterus. I am very sorry about your brother, this condition is very painful if not treated correctly. Ankle fusion is something that is performed around the world, my surgeon is gone a lot traveling around and teaching other doctors around the world his techniques. 29 is not to old to have your ankle worked on, having a fusion at 18 is almost unheard of but my case was so severe it was warranted. If you have any more questions or if I can be of any help to you or your brother please don't hesitate to shoot me a message! I would love to help if possible!

Thanks so much :) I was pretty shocked to see this AMA come up, I have been chatting about it to my boyfriend all afternoon. I will catch up with my brother soon and let him know about this. I'll see if I can find any info about exactly which methods were used on me and my brother. I don't know the exact names, I was so young when it was all happening that I kinda blocked it out.

That sounds good! Its crazy how cool it is to finally know of other people with the same condition! Looking forward to hearing back from you soon!

Hi OP! Thanks for doing this AMA, caught my eye as a Physio! Really interesting to see this type of treatment being used as it is still a bit controversial, but really hope it works out for you! Just wondering..was the "serial casting" you had called the Ponsetti method? I had the chance to see one of the best physios for the Ponsetti method in the UK working in paediatrics and it was super interesting! Really surprised it didn't work for you. You're super brave and strong for having been through all this and staying so positive :) Thanks again!

I did undergo some Ponsetti casting however they were 99% sure I would need surgical intervention from the first time they saw how deformed the foot was. I was not only rotated medially but it was rotated upwards as well which complicated the issue. My twin was very successfully treated with a bilateral club foot using the Ponsetti method.

So my mom recently had an ankle replacement. Have you tought of doing the same?

I have thought about it but it would really limit me in the things that I can do. Ankle replacements are meant for older people who are less interested in pursuing a more active lifestyle. I would never be able to rock climb or run or do things that could cause a potential dislocation of the joint.

Genuine question, why is there a 'yes' written on your foot?

For this surgery I had to take a pen and write yes on the foot I wanted to be cut into, then the surgeon has to come over and sign his initials to make sure that they are doing the correct surgery on the correct patients correct limb. Basically they are doing it to avoid a very costly lawsuit down the line haha

Thanks for the reply! That's a rather interesting way to make sure they get the right limb! Glad they actually did!

I'm sure glad they got the right foot too! Haha

In one of your answers, you said that the stimulator is only good for 6 months, then it has to be replaced. Won't that cause a lot of opening/closing of the incision site - meaning, does that hamper the healing process?

The stimulator is only good for 6 months, after that I will have it completely removed without a secondary one placed. I have had over 30 incisions made over the last 11 months, many of which have been opened more than once, and every time it is opened and closed the healing time takes longer and longer because of the fat displacement underneath the incision. Less fat= less tissue for the stitches to hold on to and you are working with damaged goods IE scar tissue.

Wait so you have a robot ankle?

You could say that, I have one plate, and 3 screws along with the stimulator so safe to say I'm part cyborg.

First of all, I hope you have a good recovery without a hitch. So, the implant is under the skin? How big is it?

Thank you for you well wishes! The implant is placed right under the skin and the battery pack is about an inch and a half wide and a half an inch thick and the guide wires are very thin.

Do you have to get specially made shoes, or is there a certain company you have to order from in order to get different sized shoes as a pair? Or can you request that from any company?

There are very few companies that have programs in place for people with two different sized feet. Nordstrom will let you split sizes free of charge, and Brooks running shoes charges an additional 10-20 dollars to get you two different sizes. I have a few pairs of Brooks, but I have fallen in love with Nike Free Run 5's and unfortunately if I want a pair then I have to buy two different pairs which runs me about 200$. They are the first shoes I have tried that just feel great and they support the defective foot really well.

A friend of mine from high school had one leg that was shorter than the other, and the shoe he had for that side had a thicker sole to make up the difference. Do you have to wear a shoe like that? If so, do ordinary companies add that thickness to the shoe? I love how positive you are about this! Thanks for sharing and taking the time to answer questions!

I have worked with a lift but I have never had one placed on the sole of the shoe, I have always had one that goes inside the shoe, but most companies unless it is a medical supply shoe store will not add height. You have to go to a specialist to do that for you which is very expensive.

Did your heel heal?

My heel did heal. Weird concept, there is a thin fracture that will not heal, lets take a huge chunk from somewhere else to fix the problem...

Not sure if you know the answer to this, but do you have any idea if this is a marketed device fda cleared device, investigational device, etc? Name of the device, literature, etc, I'm just curious.

This is a FDA cleared device, the only reason this is considered controversial is that this device is mostly used in spinal fusion surgery not feet. Its called the Biomet Internal Bone Stimulator. More info: http://www.biomet.com/trauma/getFile.cfm?id=3005&rt=inline

This is badass. I hope it works out for you this time!

Just wondering if things continue to not take and work out, has amputation ever been discussed as an option?

Just curious as I've heard of people who get so fed up with dealing with the constant surgeries and pain that they decide to just rid the body of it.

I have absolutely thought about amputating the joint if it continues to give me issues. I am all for it if the pain after this surgery is worse than before or still giving me a lot of problems. I want to work as a nurse which is an on the feet kind of job so I want to be able to do what I want. If amputation can give me a better, more active life, then I would consider it wholeheartedly.

I constantly joke semi seriously about getting blades if it gets worse, sometimes I feel like it would be worth it just so I could get around day to day without limping. Maybe I could even run for more than 30 seconds!

I do the same thing, if I can live comfortably then I'm all for it, I think. I mean its weird to think of allowing someone to chop off your limb...

True but if the quality of life is better, I may consider it. It's a massive thing to have to come to terms with and I really hope it never gets that far with me. I think I would go for it but when it came down to it, would I? Not sure.

My thoughts exactly, its easy to talk about but would be almost impossible to go through with it I think.

Maybe we can share notes! On Feb 20th I will be getting a full 3 way fusion on my L Ankle. I have advanced end stage osteoarthritis. I shattered my ankle while running when pregnant. Anyways 15 years of full out hell. (I am thinking about blogging about my experiences.) They are going to take a graft from my hip and use a bone simulator to hopefully speed the healing. My doctor is promising me pictures during the surgery, and I am planning to document after as well. Do you think that having a community of fellow bone crunchers or others that known the pain.... Would be helpful? I know with me... I feel the need to talk with others. I am scared I have had other surgical work that went badly...

I have a long history of bone issues... Started when I was young as well. (I don't want to hijack your IAmA.)

Some things that help me. Swimming! Put me in the water I am in heaven! I found a physical therapist with a heated pool. I swim 3 times a week. Aqua jogging (no weight, with a aqua jogger belt) http://www.aquajogger.com/ My dog... His warmth somehow eases my bone pain, and he relaxes me. Which prompts staying active when possible. Swimming walking the dog (I have to stay on flat land) Trying to keep my weight down... That is a whole other issue. A tens unit! Best invention ever! I had *I stress had, a issue with pain meds they (doctors) had me so messed up. I went off everything. Only thing I am on now is high dose naproxen 500 mg I can take 1 q12 not touching it. Re---> Fusion (have you had issues with pain meds?) To control pain I have used still do... a) Massage therapy b) acupuncture c) tens unit d) aquatic therapy includes hot h29 with massage and jets cod h20 therapy.

Do you have helpful advice for me? Looks like your incision points look sort of how mine will look... Do you have family that is helping you? They tell me that I will have at least 10 weeks off my feet completely, how long have you been nonweight barring?
Do have the little knee cart? Is it like Mario Kart? (lol JK) Are you in a air cast? Thank you! Good Luck

I would absolutely LOVE to help you in any way I can because I know I really wanted someone to talk to before surgery that had gone through the procedure themselves. 1) I had almost 0 cartilage left in the joint before surgery. I needed and would have benefited from a full fusion but elected to go with the partial 2 way fusion because of how young I am. (18) I don't want a full fusion because with a full fusion you only have about 10-15 years before you will have worn down all of the cartilage in your knee and hip from having to change the way you walk resulting in a knee and hip replacement. 2) The pain we experience is one that is hard to describe and hard to live with because it is a type of "silent disability", you look and act normal so many people do not understand what its like. This for me is really hard to cope with, so having a network of understanding people is key. 3) I was promised a 3 month recovery because the doc thought that my age would have me healed up quite quickly, I have been in a boot/cast after 3 surgeries for 11 months, so prepare for things to possibly go wrong or not quite as planned. 4) I had two bone grafts done, one during the second surgery that was harvested from my heel and one bone graft done during the third surgery that was harvested from my tibia. We shall see if they help this time. 5) I have been a competitive swimmer on and off throughout my life. During high school I feel in love with water polo, so water is my heaven as well. 6) I used an external bone stimulator for about 5 months and we didn't see a whole bunch of growth but we did see a lot after implanting the internal one. 7) Pain meds are something that I try my very hardest to stay away from, I was off heavy meds about 4 days after the first surgery- this was the most extensive surgery. I had a dual fusion, 4 inch screw placed through my heel, a tendon transfer and a pin placed in one toe and my calf lengthened. I only took pain meds for three days after the second and third but I have a very high pain tolerance. You will not be able to take Motrin or ibuprofen after the surgery because it is a blood thinner and it stops bone healing so avoid it like the plague. 8) Talk to your doctor about taking a vitamin D and calcium supplement to help promote bone growth. I take an Oscal every day to help healing. 9) After the first surgery I was NWB (non weight bearing) for 3 months, I started walking two weeks after the second and 8 weeks after the third. It all depends but 10 weeks sounds about right. 10) I do have family to help but I am a full time college student that lives three hours away from home so I am kinda on my own unless I am home for break. 11) GET A KNEE SCOOTER!!! Best 200$ I have ever spent on Amazon, and some insurances companies will cover it. Go for it. Also invest in a cast cover so you can shower, a shower chair so you are not balancing haphazardly on one foot, and good ice packs. 12) Do not ice your foot directly, place the ice under the back of your knee, you will get "freezer burn" on your foot and this can be permanent damage. 13) I am in a walking boot now, I have gone through 8 boots and 4 casts. The boots fall apart really quickly once you start walking.

I would love to email you and connect further so I can send you more info and answer more questions, whatever questions you have. I believe when it comes to your health and body then there are no stupid questions and I would LOVE LOVE LOVE to help you. PM your email if you are interested.

Those small electric shocks you mentioned, do they hurt?

Yes they do. Its a weird intense burning that radiates throughout the foot, they have woken me up before because of how intense they can be.

Darn sorry to hear thay. But its helping right?

It is helping, we think. They did a hardware revision along with the stimulator placement so we don't know which one is helping but we are seeing bone growth on x-ray so I'll take it!

So what is a bone stimulator and what does it do? How does it work?

A bone stimulator is a device used to promote bone growth if the bone has shown signs of non-union. It can be worn outside of the body, which I tried for about five months without success or it can be implanted within the body which has a higher chance of success. It sends very small electric shocks from the battery pack through the guide wires into the bone which creates micro-fractures within the affected area which seems counterintuitive but it actually stimulates an increased blood flow which helps to heal the fracture.

Has anyone ever misheard you say "electric boner stimulator", cause, you know I kinda misread it for a moment there...^{In his ankle?! How does that work?}

Nope! I have never even thought about it until I did this AMA haha

I was just reading yesterday that this is one method to make you taller, true/false?

In my research I do not think this stimulator is what is used to make someone taller, this is just to gel fractures. There is a device that is implanted into the marrow of a bone after a bone is broken that gives the patient the ability to stretch the bone while it heals around it to accomplish more length in a limb.