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[Activatedxx]

How much have you lengthen now? Did you see any patient who did LON tibia with Dr Halil?

There are some but it seems most of them are for femur

[moretallpls]

There was somebody that did 10 on femur and after fixator was out directly 8 cm on tibia. INSANE but he wrote he was well i think then disappeared. In his x-rays of tibia alignment didn't look good. As the big bone has the nail inside, but the small one has nothing, so there was a big misalignment. I don't know at the end how they fix that

[Activatedxx]

There was somebody that did 10 on femur and after fixator was out directly 8 cm on tibia. INSANE but he wrote he was well i think then disappeared. In his x-rays of tibia alignment didn't look good. As the big bone has the nail inside, but the small one has nothing, so there was a big misalignment. I don't know at the end how they fix that

Monorails are much more comfortable but less reliable and slower healing than ilizarov, people that do have complications I don’t think is very often but when they do, they usually don’t post on the forum because they are scared of P sing off the medical team, I know couple people that have complications but don’t post it, I posted mines because I believe in making an honest and transparent diary

Tibia is more likely to be misaligned, I’m not sure if they can fix it, if it was in the safe terms of lengthening (5cm-6cm)it is extra pain and surgery but I’m sure it could be fixed,

However 18cm of lengthening is pure stupidity, even if you do walk I doubt your athletic ability will be 50% of  pre op

[Bob]

@Activatedxx.
Hope everything is OK with your lengthening. May I ask do you still take your stomach needle medicine and how long do you have to do that?

[Activatedxx]

@Activatedxx.
Hope everything is OK with your lengthening. May I ask do you still take your stomach needle medicine and how long do you have to do that?

The needle is anticoagulant/bloodthinner that you take for only 10 days after surgery to prevent blood clots

[Activatedxx]

Update: as already stated I am still upset I had extra pain and to waste days recovering from correction surgery that could have been used for lengthening. People that had surgery before me have passed me and lengthened more.
I recovered from the surgery mostly, but my incisions are still healing. I had the same bowel irritation from aenesthesthia for a few days where I would have to go number two 4-5 times a day. I started lengthening again, and I don’t have any pain from lengthening so far that is more than 2/10 except this wicked knee pain in my right knee. If my knee is bent and I move it a certain direction / put pressure on my heel I get a terrible 8/10 pain spike. It feels like my knee is on fire, It’s only on my right knee, ice packs and anti-inflammatory Diclofenac topical cream helps alot with symptoms but doesn’t prevent it from being triggered by simply sitting up/down for example. I have to carefully do everything. I also have a rubbing/grating noise when bending knees (crepitus) I’ve heard from others that it goes away after fixator removal, but it is definitely going to be a long road still, I have only crossed the halfway mark and it only keeps getting tougher and tougher. Being back home definitely does feel way way way better, but I am still at one of my top 3 lowest points I have ever been, mentally & emotionally. Being back home is the equivalent of having commissary and cigarettes in prison. It’s a big plus but still prison with these leg cuffs at the end of the day.

I have been slacking on physio since I have been home, I have been copying the exercises with my nephews but they are nowhere like a real physical therapist. I use stretching bands from Amazon and have been doing physio and stretching religiously for at least an hour every day. Stretching hard hurts at first but relieves a lot of lengthening pain so it’s a great trade off. Especially when doing some before and some after you lengthen. I’m scheduling a physical therapist this week to come
I highly regret not having the stretching bands from beginning, they would have helped a ton. They are a must have

[Bob]

Update: as already stated I am still upset I had extra pain and to waste days recovering from correction surgery that could have been used for lengthening. People that had surgery before me have passed me and lengthened more.
I recovered from the surgery mostly, but my incisions are still healing. I had the same bowel irritation from aenesthesthia for a few days where I would have to go number two 4-5 times a day. I started lengthening again, and I don’t have any pain from lengthening so far that is more than 2/10 except this wicked knee pain in my right knee. If my knee is bent and I move it a certain direction / put pressure on my heel I get a terrible 8/10 pain spike. It feels like my knee is on fire, It’s only on my right knee, ice packs and anti-inflammatory Diclofenac topical cream helps alot with symptoms but doesn’t prevent it from being triggered by simply sitting up/down for example. I have to carefully do everything. I also have a rubbing/grating noise when bending knees (crepitus) I’ve heard from others that it goes away after fixator removal, but it is definitely going to be a long road still, I have only crossed the halfway mark and it only keeps getting tougher and tougher. Being back home definitely does feel way way way better, but I am still at one of my top 3 lowest points I have ever been, mentally & emotionally. Being back home is the equivalent of having commissary and cigarettes in prison. It’s a big plus but still prison with these leg cuffs at the end of the day.

I have been slacking on physio since I have been home, I have been copying the exercises with my nephews but they are nowhere like a real physical therapist. I use stretching bands from Amazon and have been doing physio and stretching religiously for at least an hour every day. Stretching hard hurts at first but relieves a lot of lengthening pain so it’s a great trade off. Especially when doing some before and some after you lengthen. I’m scheduling a physical therapist this week to come
I highly regret not having the stretching bands from beginning, they would have helped a ton. They are a must have

Thank you for all your info/advice. Regarding your noise from bending knees - yes, I also heard from patients who has done lengthening surgery say that it goes away after fixator removal if not before.

[LON-next]

Is IT band release always necessary in femur lengthening?

Just jumping in here to answer this. Yes, IT band release is deemed as necessary for lengthening over 3 cm. and since almost every patient lengthens over this limit, all LL doctors perform IT band release by default

[Bob]

Just jumping in here to answer this. Yes, IT band release is deemed as necessary for lengthening over 3 cm. and since almost every patient lengthens over this limit, all LL doctors perform IT band release by default

Thanks for the info. Does IT band release have any negative consequences?
https://regenexx.com/blog/iliotibial-band-itb-release-surgery/

[LON-next]

Well, IT band release has as much negative consequences as anything else related to limb lengthening surgery i.e. its not ideal to alter a part of your body, but it’s not severely detrimental to the point of causing a disability or long term pain or discomfort.
With IT band release ordinary people won’t notice the difference post the lengthening and recover phase. But if you’re an athlete or have athletic aspirations, that’s when you will notice a difference in your performance.

If you want to know even more, pm me, don’t like spamming people’s thread

[Activatedxx]

I wrote this over the course of the week so it might have wrong past/present tenses

Good news & bad news
my health insurance I purchased when I got back scheduled me virtually on zoom to see a doctor who referred me to an orthopedic doctor. I should have been able to see one a while ago but this was the earliest available, and the other in-network doctors were even later appointments ( I only paid a very small amount to see a doctor that my insurance picks, I have blue cross blue shield ). It’s stupid but I cannot see an orthopedic doctor directly, I have to be referred to one by a regular doctor for them to cover it ( they cover 70-80% of orthopedic and X-rays etc )

I went to the ER July 6 to get a free X-ray, I lied and said I bumped my left fixator hard and felt pain and they took an X-ray. I should have said I hit both sitting down or something because they refused to take an X-ray of my right since there wasn’t technically a problem with it. I was reminded of America’s crappy healthcare system, as I waited for 2 hours to see the doctor Then another 2 hours seeing them and getting the X-ray and discharged.

It was very weird seeing the doctor and the radiologist specifically. She seemed to guess why I had them on when she saw the fixators and the length of the bone gap. She poked questions constantly like “so why do you have fixators on” and stuff like that. I said it was to correct a deformity but they knew it was BS lol but they didn’t say so, they just kept asking me what deformity, I said very bowed femurs and I was kind of dodging/BSing them. Me personally, I don’t care for peoples opinion especially ones I will not see again so what does it matter.
I could have waited to get an X-ray or paid for one but I really wanted to see the X-ray of my left femur it’s been a while since the correction.
Plus I thought they were going to X-ray both legs, which would have been 350-450$ out of pocket. If I knew they were only going to do left I would have just done it myself. They said it looked fine and no problems at the ER. This is a picture of it taken 6 days ago, they didn’t measure the bone gap.
I should be or very close to 5cm in X-ray

https://imgur.com/gallery/Pi95pXF

However there was a problem they didn’t point out which was really stupid of them. I didn’t see the X-ray copy until a few days ago and freaked out because the side view of my femur shows bone split. I literally freaked out However after seeing the orthopedic doctor today she said it is fine and will heal normally back to straight on it’s own, as did doctor buldu. I’m guessing it fractured from correction surgery, I don’t know.
My nerves skyrocketed but calmed down now after the doctor I saw today said it’ll be fine. However it is a problem when I take my fixator off I am not 100% sure it will be able to support my weight at the top end.
It’s always one thing after another in my case.

https://imgur.com/gallery/DAd8bqm


my terrible knee pain went away a week ago, after resting/icing/and most important staying off any strenuous activity on my right leg. I think what caused it was I would flip to my stomach or back, on the right side only. it never hurt to put body weight on the fixator but it caused the knee pain for sure from putting tension/weight on the fixator. The oral medicine voltaren/diclofenic sodium does not work good, but the cream version is amazing for the knee pain, it’s prescription only but my grandmother gave me hers, she doesn’t use it.

Mentally I am at a 8/10 pain level at times. I have major anxiety, it feels like I am holding my breath even when I am breathing. Especially at night.I haven’t had a comfortable sleep in months. I hate life at the moment, but am grateful it is not worse. I would give 1000$ to have just a week of good night sleep on my side. I am more comfortable here back in the states for sure, but being crippled with no comfort 24/7 due to these fixators has F’d my mind. If I don’t take a Xanax sometimes I feel like I am going to burst. The other night I punched my metal bed frame and cut my hand a little while sitting in bed.

Life sucks, but at least it’s not worse thankfully. I should be taking my fixators off end of this month however it seems like forever away and I am not even  sure if I will be able to take off the left side yet.

2 of my pinsites got infected a few days ago and have been hurting terribly, my bottom left and my top right. I started antibiotics today, I can’t straight my right leg because it hurts so much at hip area, the muscle by pinsite is painfully swollen/inflamed. Hopefully will clear up in few days with antibiotics

[willgettaller]

I wrote this over the course of the week so it might have wrong past/present tenses

Good news & bad news
my health insurance I purchased when I got back scheduled me virtually on zoom to see a doctor who referred me to an orthopedic doctor. I should have been able to see one a while ago but this was the earliest available, and the other in-network doctors were even later appointments ( I only paid a very small amount to see a doctor that my insurance picks, I have blue cross blue shield ). It’s stupid but I cannot see an orthopedic doctor directly, I have to be referred to one by a regular doctor for them to cover it ( they cover 70-80% of orthopedic and X-rays etc )

I went to the ER July 6 to get a free X-ray, I lied and said I bumped my left fixator hard and felt pain and they took an X-ray. I should have said I hit both sitting down or something because they refused to take an X-ray of my right since there wasn’t technically a problem with it. I was reminded of America’s crappy healthcare system, as I waited for 2 hours to see the doctor Then another 2 hours seeing them and getting the X-ray and discharged.

It was very weird seeing the doctor and the radiologist specifically. She seemed to guess why I had them on when she saw the fixators and the length of the bone gap. She poked questions constantly like “so why do you have fixators on” and stuff like that. I said it was to correct a deformity but they knew it was BS lol but they didn’t say so, they just kept asking me what deformity, I said very bowed femurs and I was kind of dodging/BSing them. Me personally, I don’t care for peoples opinion especially ones I will not see again so what does it matter.
I could have waited to get an X-ray or paid for one but I really wanted to see the X-ray of my left femur it’s been a while since the correction.
Plus I thought they were going to X-ray both legs, which would have been 350-450$ out of pocket. If I knew they were only going to do left I would have just done it myself. They said it looked fine and no problems at the ER. This is a picture of it taken 6 days ago, they didn’t measure the bone gap.
I should be or very close to 5cm in X-ray

https://imgur.com/gallery/Pi95pXF

However there was a problem they didn’t point out which was really stupid of them. I didn’t see the X-ray copy until a few days ago and freaked out because the side view of my femur shows bone split. I literally freaked out However after seeing the orthopedic doctor today she said it is fine and will heal normally back to straight on it’s own, as did doctor buldu. I’m guessing it fractured from correction surgery, I don’t know.
My nerves skyrocketed but calmed down now after the doctor I saw today said it’ll be fine. However it is a problem when I take my fixator off I am not 100% sure it will be able to support my weight at the top end.
It’s always one thing after another in my case.

https://imgur.com/gallery/DAd8bqm


my terrible knee pain went away a week ago, after resting/icing/and most important staying off any strenuous activity on my right leg. I think what caused it was I would flip to my stomach or back, on the right side only. it never hurt to put body weight on the fixator but it caused the knee pain for sure from putting tension/weight on the fixator. The oral medicine voltaren/diclofenic sodium does not work good, but the cream version is amazing for the knee pain, it’s prescription only but my grandmother gave me hers, she doesn’t use it.

Mentally I am at a 8/10 pain level at times. I have major anxiety, it feels like I am holding my breath even when I am breathing. Especially at night.I haven’t had a comfortable sleep in months. I hate life at the moment, but am grateful it is not worse. I would give 1000$ to have just a week of good night sleep on my side. I am more comfortable here back in the states for sure, but being crippled with no comfort 24/7 due to these fixators has F’d my mind. If I don’t take a Xanax sometimes I feel like I am going to burst. The other night I punched my metal bed frame and cut my hand a little while sitting in bed.

Life sucks, but at least it’s not worse thankfully. I should be taking my fixators off end of this month however it seems like forever away and I am not even  sure if I will be able to take off the left side yet.

2 of my pinsites got infected a few days ago and have been hurting terribly, my bottom left and my top right. I started antibiotics today, I can’t straight my right leg because it hurts so much at hip area, the muscle by pinsite is painfully swollen/inflamed. Hopefully will clear up in few days with antibiotics

Your latest post made me sad though. Did you get better now ?

[Activatedxx]

Your latest post made me sad though. Did you get better now ?

It doesn’t affect lengthening, but will affect locking the nail and will require extra healing. There’s a small chance it won’t support the nail being locked at the top, and at that point I don’t know what I will do. Possibly Either I won’t be able to weightbear on that leg for a little while longer after removalI think, or I will have to keep the fixator on until consolidation. I would choose not being able to weight bear on the leg, I don’t care I’m not keeping the fixator on. At this point I am so mentally fk’d from having it on, that it has cured my height neurosis because I don’t give a sh*t about anything other than getting back to normal, I am so depressed and have so much anxiety. I swear to god Sometimes I hit myself in the face because I can’t take it anymore, it’s been so long, I could quit early but then I will regret it even more that I went through all this and couldn’t finish strong in the last part. Even though the end is the shortest, you are drained. Just like that last few reps when you work out is harder than the first ten.

If it was on my lower legs it would not be anywhere as bad, but the femurs even with monorails is so fking tough it is worth every penny for precice in my opinion even if the recovery is much longer

[Activatedxx]

Basically as long as I can weightbear when lock that nail that fracture is not a big deal and will heal straight and correctly on it’s own. I was relieved so much when I heard this, but a little overwhelmed again when I was told there’s a chance it can’t be locked or if it is locked I can’t weightbear on it


Also this is another opinion from parihar
https://imgur.com/gallery/c5O9Mo5

[Jokerhastowait2022]

Hi bud, Wow you are going through a lot, aren't you? I'm really sorry you had to deal with this kind of complications. I belive if your journey was smoother, maybe the mental state you're in would have been better. I hope you overcome these obstacles successfully and regain your normal life. By the way, what did Dr. Buldu have to say about these complications?

[Stretch]

You are almost there!

[Activatedxx]

Hi bud, Wow you are going through a lot, aren't you? I'm really sorry you had to deal with this kind of complications. I belive if your journey was smoother, maybe the mental state you're in would have been better. I hope you overcome these obstacles successfully and regain your normal life. By the way, what did Dr. Buldu have to say about these complications?

Hey, yeah definitely the complications made it a lot worse. Especially since I lost few days of lengthening, days are like weeks in my situation. complications can happen to anyone. Even without the complications the femur fixators are killing my mental health from the start. Thanks a lot for your support, Hopefully the fracture doesn’t affect locking nail, if it doesn’t then I will be okay, buldu didn’t really say anything about them except how to solve them
As long as I can remove the fixators and lock the nail, the only loss from the complication would be the extra surgery suffering but it wouldn’t affect me in the long run or in terms of recovery. This is “if”

[Activatedxx]

You are almost there!

Thanks bro, it truly does feel like it’s been forever with the suffering and fixators. Time feels like limbo when you have femur fixators. Every day is incredibly slow, and even though I am nearing taking them off soon god-willing, it still feels like forever away

[Activatedxx]

Another update guys (currently at 6.2 +/- cm mark)
I wasn’t going to update till next week, but I wanted to post about yesterday, I almost got wiped off the planet. I went out with my wife and she was driving, and a speeding minivan ran the light and almost barreled into us. My wife slammed the brakes and we were .1 second away from hitting. It ended up hitting a car on the other lane beside us and spun and hit the curb by us. I thought I was done for. It’s really hard to stay home all the time mentally, but going out is risky because one car accident could ruin you because your legs are already so vulnerable. The car the minivan hit flipped on it’s side. Photo attached

https://imgur.com/gallery/rynY9vY

It truly was a terrifying experience, I had accepted that I was done when it was about to hit us

I am not doing so well physically because of a pinsite infection in my right leg on top and bottom pins. I’m not sure how I got it again, I don’t think it healed fully at top pin first time because it came back after 9-10 of stopping my antibiotics. It took an extra day to get a doctor appt and it was really bad at night, I could feel my foot throb and was very hard to get through the night.
I clean my bandages meticulously. I took stronger antibiotics and felt 40% relief within a day but I could not use my right leg for a few days because the inflammation and pain at the site.
The top had a lot of pain on the muscles in the area but not actual pin. The bottom just felt like the aftereffect of a bee/insect sting constantly on the pin. I could not keep my leg straight from the pain and it resulted in my right leg being 140-150 degrees bent when standing up. My left leg is straight. I got 20* of the ROM back of the right leg from excruciating painful stretching for 1 hr.


I started experiencing some tightness at 5cm mark and i am at the 6cm now and it’s really hitting hard because I have been doing self physio but it was enough to keep me from deterioration until this infection came. My insurance took forever to get me a physical therapist (free) my first day/session is this Tuesday.

Because of these circumstances above I would put more weight in my left leg but would feel some pain (like pressing a bruise) from the fracture area on my left leg after doing it for a few days, and my right leg got weaker from not using during infection even after healed. I took a shower today and stood up for 15 min and was exhausted after. Because ive been staying off my legs that one week made me atrophy muscle a lot. Once you hit 5-6cm it’s a battle to keep whatever remains of your flexibility/muscle. And if you get a pinsite infection there’s no hope at that point to do physio because the inflammation blocks your flexibility.


I forgot to mention in last update, I constantly go up stairs, even by myself. I have someone stand behind me to make sure nothing happens but they don’t assist. I went up 3 flights of apartments stairs today and yesterday. By using my upper body on the handrails, even when they are wide apart or it’s one rail it’s harder but still can by using mainly my upper body. Also the house I live in I am upstairs so I come up and down  3-4x a day. My upper body has got insanely strong from this, not muscle mass but grip/etc.

[ab608]

that's so scary! glad you're both okay and hope the folks in the minivan are okay too. also congrats on the length you've gained! it seems like its been a rollercoaster of a journey - wishing you well for the remainder of this process. i'm sure once you're all healed months/years from now, you'll be really happy with your outcome, no matter how much length you ultimately get.

[Activatedxx]

Thank so much, it truly has been a rollercoaster and I still don’t know if I will be okay but I am really praying so, at this point I don’t think as much about the height I gained, you just worry about your recovery because that’s your priority

[Fiveandsomething]

Think of the positives bro, it’ll outweigh the NEGS. Also, it seems to me you’re putting yourself at certain risk at times. I understand wanting to get out the house due to boredom but be careful man.
@6+ you’re so close, that should be your motivation, you’re close to been done and having the fixator removed. If it helps set a reminder on your phone that does a countdown for you so every day Siri tells you you’re x amount of days from having it removed. Might sound stupid but helps mentally.

I took my first walk without walker yesterday, felt really good. I can now walk without my walker albeit a rather atrocious gait 😂😂 my shoulders jump and sh8t lol it’s crazy but little things like that scream progress and that’s the the positives I’d say try and pay attention to.

[Activatedxx]

Think of the positives bro, it’ll outweigh the NEGS. Also, it seems to me you’re putting yourself at certain risk at times. I understand wanting to get out the house due to boredom but be careful man.
@6+ you’re so close, that should be your motivation, you’re close to been done and having the fixator removed. If it helps set a reminder on your phone that does a countdown for you so every day Siri tells you you’re x amount of days from having it removed. Might sound stupid but helps mentally.

I took my first walk without walker yesterday, felt really good. I can now walk without my walker albeit a rather atrocious gait 😂😂 my shoulders jump and sh8t lol it’s crazy but little things like that scream progress and that’s the the positives I’d say try and pay attention to.

I already have a days countdown lmao, I look at it about every 15-20 minutes
My problem is I’m not 100% sure I will be able to remove the left fixator or if I can I don’t know I can weightbear depending on what the doctor says, but I’m trying to stay positive for sure

Walking without assistance feels good when you can do it, but once you hit the 4cm point+ you can’t because of atophy, or that was my case at least

[Fiveandsomething]

I already have a days countdown lmao, I look at it about every 15-20 minutes
My problem is I’m not 100% sure I will be able to remove the left fixator or if I can I don’t know I can weightbear depending on what the doctor says, but I’m trying to stay positive for sure

Walking without assistance feels good when you can do it, but once you hit the 4cm point+ you can’t because of atophy, or that was my case at least

Lol i look at mines every other second.

As per not been able to bear weight you’ll be surprised what the body can do. Once the fixator is removed and the nail is locked in, I see no reason why you shouldn’t be able to.

[ab608]

Thank so much, it truly has been a rollercoaster and I still don’t know if I will be okay but I am really praying so, at this point I don’t think as much about the height I gained, you just worry about your recovery because that’s your priority

that makes perfect sense. i'm not a doctor of course but i feel pretty confident everything will turn out fine! the complications sound tough and annoying but definitely treatable. the recovery may just take a bit longer, as you've expressed. but you're almost there - rooting for ya!

[Activatedxx]

Lol i look at mines every other second.

As per not been able to bear weight you’ll be surprised what the body can do. Once the fixator is removed and the nail is locked in, I see no reason why you shouldn’t be able to.

Because of the fracture on left leg, but I’m really really hoping it’ll be fine to lock at the top

[Growing]

@Activatedxx hope you are healing and feeling better bro. was their a reason you couldn't stay in turkey during the lengthening process? I was told I'd be looking at a 3 month stay in turkey if I was to get the Lon procedure.

[Fiveandsomething]

@Activatedxx hope you are healing and feeling better bro. was their a reason you couldn't stay in turkey during the lengthening process? I was told I'd be looking at a 3 month stay in turkey if I was to get the Lon procedure.

He didn’t want to. Plus he had other reasons as to why he had to head back. Knowing what I know now, I probably would have gotten the surgery stay here for a week or maybe 2 and headed back home. You get so home sick amongst other things. But yeah plan for 3+ months buy a round trip ticket, seeing the countdown on your return ticket helps mentally plus it’s cheaper that way. I planned for 105 days but I’m gonna be done here in about three weeks by Gods grace then I’ll stay an additional 2 for physio then I’m out. 15 days earlier than I anticipated

[Activatedxx]

@Activatedxx hope you are healing and feeling better bro. was their a reason you couldn't stay in turkey during the lengthening process? I was told I'd be looking at a 3 month stay in turkey if I was to get the Lon procedure.

Hey man, I’m currently trying to finish strong, it gets so much harder once you hit 6cm+ every half a cm gets exponentially harder. My right leg is going to need a good amount of physio, I can’t straighten fully, I believe it can’t keep up with lengthening. I did 1.5mm today and yesterday, but stopped as I feel much tighter and more pain, but hey I saved a day with these fixators on

I went back because I became extremely depressed and homesick, but mainly because my wife had to go back so I didn’t want to stay there alone. On top of that my business had a break-in (been there 5 years and my first time taking time off it gets broken into)

[Activatedxx]

He didn’t want to. Plus he had other reasons as to why he had to head back. Knowing what I know now, I probably would have gotten the surgery stay here for a week or maybe 2 and headed back home. You get so home sick amongst other things. But yeah plan for 3+ months buy a round trip ticket, seeing the countdown on your return ticket helps mentally plus it’s cheaper that way. I planned for 105 days but I’m gonna be done here in about three weeks by Gods grace then I’ll stay an additional 2 for physio then I’m out. 15 days earlier than I anticipated

It’s definitely not what we anticipated

[Bob]

.