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[stretched]

Hello lads,
So probably one of the most debated topics here is how painful this procedure is. Pain is of course going to vary from individual, but at the end of the day if all other factors are equal (Dr skill, meds, etc) there should at least be some agreement on how much pain one can expect from this procedure.

Now first, I think everyone can agree that externals are more painful, especially on femurs. You gotta really hate yourself to do LON on your femurs.

I have a few friends who work in emergency medicine and they all say that there's no way a controlled breakage of the bone by a Dr. is going to cause excruciating pain (but it will still of course hurt), and not nearly as much pain as breaking a bone due to a car accident, and even so, once you get a   ton of pain meds the pain becomes manageable after a while. What they did say though was PT and having to sit in bed for weeks is going to suck.

Anyways, to those who did internal nails with a reputable Dr, was this procedure more or less painful than you expected? Was it really painful to the point to where you were passing out as some users on the forum have suggested or was it more moderate and annoying? And how long was everyone on opioids for.

[Medium Drink Of Water]

No, at least not LON tibias.  More like consistently uncomfortable.

[Unknown]

No, at least not LON tibias.  More like consistently uncomfortable.

What was the worst pain you felt throughout your lengthening procedure? Im afraid of consistent intense pain for the entire lengthening phase, that would be unbearable and horrifying.

[shortisnotfun]

No, at least not LON tibias.  More like consistently uncomfortable.

For me LON Tibias was excruciatingly painful. I did monorails and it ranged from 4/10 to 8/10 everyday.

[Taller90]

If you already care about pain than my honest advice would be to let it go! You need to do this with fully convinced and motivated to do that what will be necesseray for a successfull lengthening. There are so many people who have already did this surgery and nobody died due to the pain....

Shift you focus on a proper preparation and how you will get your mind ready for this journey. This would be much more worth that discussing about how painfull the surgery might get. As you also said, at the end pain is a very individual topic.

[lessthanavg8300]

One little golden effect is when you first wake up from surgery and for weeks after you cant even clench your butt cheeks together because your muscles are so stiff and swollen.  That was fun.

As other have mentioned, its more constant discomfort than it is high levels of pain.  But there are some painful times in the beginning.

[Medium Drink Of Water]

What was the worst pain you felt throughout your lengthening procedure? Im afraid of consistent intense pain for the entire lengthening phase, that would be unbearable and horrifying.

Just lying still didn't hurt much.

The worst pain was in my feet when I stood for the first time after the leg break + nail installation + frame installation surgery.  After maybe 10-14 days of lying in bed recovering from that they told me to get back on my feet.  It felt like I was stepping on spikes.

[uponly]

In day 9 post-surgery (Precise 2.2), here are my thoughts on pain.

Yes, it is absolutely painful to the point of excruciating. I passed out from the pain once in the hospital. I know others who have. The first week is absolute hell in terms of pain. I have been severely injured before, with high levels of pain. Nothing like this. The second and third day after surgery are the worst, when the anesthesia and/or nerve block wear off. There aren't enough opioids in the world that second day for you to not feel pain, the best you can hope for is a pain level that's tolerable enough so you can make it through.

No Dr. worth their salt will lie to you about this. Every Dr. I consulted with said there would be a lot of pain at the beginning. They also said the pain can be managed. I am also finding this to be true. Thus far, during the second week, the pain hovers at about 4-6 for me, with some exceptions, and it can be managed with prescription meds, the proper amount of rest, PT to strengthen muscles and regain motion, etc.

Sleep is your absolute best friend for pain, and everything else during this procedure. I'm cutting my days in half, napping during the day, trying to get 10 hours of sleep at night, etc. When it works, I get a natural 2 digit drop in pain the next day.

Thus far, I have found this video by cyborg4life to be a dead to rights accurate representation of my own experience with pain. I hope you find it useful.

[Jaki19]

.

[AllinStryde]

Yeah, it's painful.  But so was the height dysphoria that occupied my mind on a daily basis.  So...I said, it's gonna have to be one or the other and I went for it.  You should too if you are thinking about it.

[stretched]

In day 9 post-surgery (Precise 2.2), here are my thoughts on pain.

Yes, it is absolutely painful to the point of excruciating. I passed out from the pain once in the hospital. I know others who have. The first week is absolute hell in terms of pain. I have been severely injured before, with high levels of pain. Nothing like this. The second and third day after surgery are the worst, when the anesthesia and/or nerve block wear off. There aren't enough opioids in the world that second day for you to not feel pain, the best you can hope for is a pain level that's tolerable enough so you can make it through.

No Dr. worth their salt will lie to you about this. Every Dr. I consulted with said there would be a lot of pain at the beginning. They also said the pain can be managed. I am also finding this to be true. Thus far, during the second week, the pain hovers at about 4-6 for me, with some exceptions, and it can be managed with prescription meds, the proper amount of rest, PT to strengthen muscles and regain motion, etc.

Sleep is your absolute best friend for pain, and everything else during this procedure. I'm cutting my days in half, napping during the day, trying to get 10 hours of sleep at night, etc. When it works, I get a natural 2 digit drop in pain the next day.

Thus far, I have found this video by cyborg4life to be a dead to rights accurate representation of my own experience with pain. I hope you find it useful.

Good video.
Yeah if you ask the Drs. about pain they usually say something around the lines of "its painful but manageable with meds"
During the first week or so, what percent of the time would you consider the pain manageable? When you were lying still, staring at the ceiling was the pain bad or manageable then, or only when you tried to move or do PT? And I'd assume the pain would be much worse at night, would you agree?

[saltedchocolate]

Hello lads,
So probably one of the most debated topics here is how painful this procedure is. Pain is of course going to vary from individual, but at the end of the day if all other factors are equal (Dr skill, meds, etc) there should at least be some agreement on how much pain one can expect from this procedure.

Now first, I think everyone can agree that externals are more painful, especially on femurs. You gotta really hate yourself to do LON on your femurs.

I have a few friends who work in emergency medicine and they all say that there's no way a controlled breakage of the bone by a Dr. is going to cause excruciating pain (but it will still of course hurt), and not nearly as much pain as breaking a bone due to a car accident, and even so, once you get a   ton of pain meds the pain becomes manageable after a while. What they did say though was PT and having to sit in bed for weeks is going to suck.

Anyways, to those who did internal nails with a reputable Dr, was this procedure more or less painful than you expected? Was it really painful to the point to where you were passing out as some users on the forum have suggested or was it more moderate and annoying? And how long was everyone on opioids for.

NOT really if u lengthen slow tbh, i did LON and didnt have much pain in my right leg bc i lengthened v slow, but my butcher dr made me lengthen my left leg at 1.25 mm / day so i still have nerve pain from that , not to mention he also cut a subcutaneous nerve during achilles lengthening, i had to get nerve repair surgery. nerve pain is the worst. not the bone breaking pain. just lengthen slow and ull breeze through.

[uponly]

Good video.
Yeah if you ask the Drs. about pain they usually say something around the lines of "its painful but manageable with meds"
During the first week or so, what percent of the time would you consider the pain manageable? When you were lying still, staring at the ceiling was the pain bad or manageable then, or only when you tried to move or do PT? And I'd assume the pain would be much worse at night, would you agree?

Day after surgery there was some pain no matter what I did. Everyone in the hospital unilaterally told (warned me) that day after surgery would be the worst. As I immediately went to Dilaudid 4 mg and muscle relaxers, I brought it under control in a day.

During the first week, the pain is absolutely worse when you move. If you lie still for too long, you just get stiff and sore, you can stretch out a bit and you're fine. Pivoting out of bed and transitioning to the wheelchair, for instance, takes the pain from a balmy 3 to a pretty sh*tty 7. Transitioning from wheelchair to the toilet shoots it up to a 9. Going back to wheelchair and getting back in bed can spike it to a 10 but by that point you're too exhausted to care.

(the action sequence above took me 30 minutes total to perform in the hospital, and by the time I got in bed I didn't have an ounce of strength left).

I think the pain was/is manageable pretty much most of the time with the exception of the first and second day after surgery. You are just going to hurt. In my case, I wanted nothing to do with opioids going in, and labored under the happy delusion that the Tylenol and muscle relaxers would be enough. They could not give me Dilaudid fast enough.

At this point, pain is still worse with movement, which is why the doctor doesn't really want you moving. I'm managing it with a prescription NSAID from the hospital, Tylenol, Turmeric gummies and muscle relaxer as needed. I haven't taken opioids in two days. I added IcyHot to the mix and that's helping a lot.

Ease into PT. Aggressive PT makes it worse. I worked up to what I'm doing now and it's probably short of the full hour, but I'm listening to my body and what I'm doing is working.

At night: Pain isn't worse at night, but I wake up from muscles getting sore. I move around a bit and go back to sleep.

[RealLostSoul]

Yea it’s pretty painful and also extremely exhausting. Sleep deprivation will make you feel how it was like living in a labourer camp .

[oklama]

I really think people on here play it up a bit but im sure it could be incredibly painful at times especially toward the beginning. but I dont expect it to be something you couldn't deal with unless your doing something stupid like LON femur.

[Siegfried]

First off all there are two types of pain associated with LL:

1. surgery trauma pain: maxes out at 2-3 days after surgery and residually goes down till 2-3 weeks post surgery
2. lengthening pain: usually after a couple of cms


My experience: I had 3 separate ll surgeries (precise 2) in total, so I have a decent representation of what the pain was like.

- First few days were a 6/10, with pain medication not too bad.
- After 1-2 weeks I was able to sleep decently (5-6 hours).
- After 3 weeks barely no pain anymore.
- After 4 weeks no more pain meds were needed

Lengthening pain is pretty mild if you lengthen conservatively and slowly.

Honestly I think a lot of people here tend to exaggerate their pain experience for some reasons. If youre on opiods for the first 1-3 weeks, its usually not THAT bad.

[RealLostSoul]

I really think people on here play it up a bit but im sure it could be incredibly painful at times especially toward the beginning. but I dont expect it to be something you couldn't deal with unless your doing something stupid like LON femur.

People on here play most things down. Let me tell you this. When I did it I realised this forum was so wrong in almost all aspects.

Pure pain may be low for the most parts but the exhaustion is extremely painful and I mean physically, not mentally.

[Unknown]

People on here play most things down. Let me tell you this. When I did it I realised this forum was so wrong in almost all aspects.

Pure pain may be low for the most parts but the exhaustion is extremely painful and I mean physically, not mentally.

Which part was the forum wrong on?

[uponly]

I really think people on here play it up a bit but im sure it could be incredibly painful at times especially toward the beginning. but I dont expect it to be something you couldn't deal with unless your doing something stupid like LON femur.

Having documented my pain thoroughly here, and having slept for 2 hours last night due to pain, I'm pretty damn certain I'm not playing anything up.

Unless you've had both legs broken and have done this surgery or are undergoing it, you have absolutely zero right to question the pain and suffering of any member of this forum that has done the surgery. If you ever do the surgery, you can come back and tell us about your own experience. So please show some respect and don't.

[uponly]

People on here play most things down. Let me tell you this. When I did it I realised this forum was so wrong in almost all aspects.

Pure pain may be low for the most parts but the exhaustion is extremely painful and I mean physically, not mentally.

I completely agree. I've seen diaries here that were borderline cavalier towards pain and exhaustion, and essentially focused on "lengthened to x, things are fine, etc."  That's just not reality.

Exhaustion is not something I've seen covered. It's as big of a factor as pain when it comes to the surgery, especially early stages. Right now, one hour of PT, several steps and bed/couch to walker/wheelchair transfers are absolutely knocking me on my ass.

[Unknown]

Having documented my pain thoroughly here, and having slept for 2 hours last night due to pain, I'm pretty damn certain I'm not playing anything up.

Unless you've had both legs broken and have done this surgery or are undergoing it, you have absolutely zero right to question the pain and suffering of any member of this forum that has done the surgery. If you ever do the surgery, you can come back and tell us about your own experience. So please show some respect and don't.

Agreed, bunch of clowns coming in here thinking this is some random cosmetic surgery and has a straightforward recovery phase. It isnt, its not a conventional surgery for a reason; it's incredibly brutal and painful and require lots of patience and effort.

[shortisnotfun]

Having documented my pain thoroughly here, and having slept for 2 hours last night due to pain, I'm pretty damn certain I'm not playing anything up.

Unless you've had both legs broken and have done this surgery or are undergoing it, you have absolutely zero right to question the pain and suffering of any member of this forum that has done the surgery. If you ever do the surgery, you can come back and tell us about your own experience. So please show some respect and don't.

If you noticed, the people who said it wasn't that painful are people who had their surgeries years ago or months ago (or people who never even had the surgery). The people like me who had their surgery fresh on their mind remember the pain and it was no joke painful af.

I think people forget about the pain anyway, regardless how bad it was.

[Siegfried]

Obviously there was some pain, duh, you get your legs broken. But the pain was not as bad, as some people here make it out to be. If you have an adequate pain medication mainly consisting of opiods, youre fine. Of course the first couple of days are painful, but thats just something you have to deal with and not wine around on the forum, and make it out to be some kind of torturous experience, which its not.

If you go read my diary, I have accurately documented my physical pain experience in the first two weeks. On three seperate occasions, since I had ll three times:

1. left leg ( tibia)
2. left leg (femur)
3. right leg (tibia + femur)

I can only speak for internal nail patients.

[uponly]

Obviously there was some pain, duh, you get your legs broken. But the pain was not as bad, as some people here make it out to be. If you have an adequate pain medication mainly consisting of opiods, youre fine. Of course the first couple of days are painful, but thats just something you have to deal with and not wine around on the forum, and make it out to be some kind of torturous experience, which its not.

If you go read my diary, I have accurately documented my physical pain experience in the first two weeks. On three seperate occasions, since I had ll three times:

1. left leg ( tibia)
2. left leg (femur)
3. right leg (tibia + femur)

I can only speak for internal nail patients.

Siegfrid, first, massive respect to you for doing this procedure 3 times. We can agree to disagree on some things. I do think there's a marked difference in whining (as in "Oh my god, I can't take it anymore, this pain is unbearable, and so on"), and stating facts (Day 1-3 are excruciatingly painful, there's a slow slider down first week, second week more so, etc.).

Realism and accuracy matter here. For a lot of folks, this forum is really the only point of information they have, and the diaries offer the only window into what this procedure is actually like when they're considering this procedure. For instance, I communicated with Unicorn and some other Guichet/G-nail patients, and any thoughts of doing the procedure with Dr. Guichet, if I ever had any, went out the window (caveat: this is just me, everyone will of course choose what's best for them).  I also found Dr. Birkholz on this forum, and was incredibly impressed. Were he not based in S. Africa, he would have been very high on my list. I also found Dr. Rozbruch here, from a patient diary. I didn't know he existed. I was all set to go with Dr. Paley until I consulted with Dr. Rozbruch.

There is a wealth of information here, as well as a wealth of misinformation. I do believe there are diaries that are understated. I don't want to speculate why, or point at anyone, but based on my own experience, there's not enough detail to let someone know that, for instance, the first week will literally be one of the toughest weeks you will go through in your entire life from a physical perspective, and that bit of information may be enough to motivate someone to stretch more, prep harder, strengthen their upper body (man, does that EVER matter), or decide this procedure is not for them.

I don't know why people that have not had this surgery would opine on how painful the surgery is. Truly baffling.

My opinions only. I appreciate your and everyone else's contributions.

[Medium Drink Of Water]

The truth is that different people will have different experiences based on both themselves and their environment.

My exhaustion and discomfort were constant, but these were not intense, extreme, agonizing sensations that would be classified as excruciating.  Doing very little physical activity, lying in bed most of the day, and taking a strong sleeping pill at night can make a big difference.  If you're working out frequently and trying to sleep with your knees locked straight and without a sleeping pill, you'll have a much worse time than I did.

My doctor had a policy of leaving the spinal anesthesia in on a slow drip for several days after the initial operation and having patients lie in bed for two weeks and be spoonfed soup and pee through a catheter for the first several days.  I'm sure that helped me.  Your doctor may have a different policy.  I was very sore and weak and lethargic for the first two weeks, but again nothing excruciating.

Standing for the first time after two weeks.  The caretakers bumping my fixator on a doorway while wheeling me to the x-ray room.  These were excruciating but not constant.

A patient with me in Beijing screamed and pounded on the walls at night and ended up quitting after about 1 cm.  Same doctor, same treatment protocols, different person, different result.

Nobody is 100% right or wrong here just because your personal experience did or didn't match theirs.

[stretched]

Yeah there is going to for sure be a lot of variance in what patients experience.

However, most people can still agree that this is an incredibly difficult procedure.
I spoke with Rich Rotella (The actor who did LL) and he said that this is an very difficult procedure and there will be some times you will mentally break. He said nobody who's done this nor any doctor worth a dime would tell you this is an easy procedure. Every CLL Dr. I spoke with said that there WILL be a lot of pain in the beginning and this is NOT an easy procedure.

Do not do this procedure unless you are REALLY dissatisfied with your height because this is no joke. Try wearing shoe lifts (add 1-2' to height) before you seriously think about doing this.

[Medium Drink Of Water]

Doing LL definitely sucks.  If you got the wrong idea from my posts, sorry about that.

[hippo60]

People on here play most things down. Let me tell you this. When I did it I realised this forum was so wrong in almost all aspects.

Pure pain may be low for the most parts but the exhaustion is extremely painful and I mean physically, not mentally.

Kinda ironic everybody who have actually done the surgery claim it's harder than what most diaries portray, yet the only person to argue differently has never done it

Siegfrid, first, massive respect to you for doing this procedure 3 times. We can agree to disagree on some things. I do think there's a marked difference in whining (as in "Oh my god, I can't take it anymore, this pain is unbearable, and so on"), and stating facts (Day 1-3 are excruciatingly painful, there's a slow slider down first week, second week more so, etc.).

While I appreciate and respect your perspective and do believe you're sharing your experience as best as you can, my experience (same doctor, only few weeks ahead of you) is very different than yours. Yes the first 2 night were pretty painful (not the entire day tho), but it got much better afterwards (I was able to sleep throughout the night). I didn't feel much pain by day 4-5, and stopped most pain meds before the end of the first week.

I'm the last person to argue this surgery isn't extremely difficult on so many levels, but it's also important to remember patient experience can vary quite significantly as well. I do wish and hope you'll feel better soon!

[Unknown]

Is doing it on your own possible overseas if its that difficult? Im planning to do it on my own very soon as i cant find anyone to accompany but now im having second thoughts reading this thread.

[uponly]

Is doing it on your own possible overseas if its that difficult? Im planning to do it on my own very soon as i cant find anyone to accompany but now im having second thoughts reading this thread.

If you don't have help during the first two weeks, you will find it VERY hard to manage. Hire a helper, easy solution. My best friends and my gf have been invaluable throughout this process. If I didn't have them I would have hired a helper for running around, fetching things, etc.

@hippo06, well wishes to you too obviously. I'm LEGIT glad your first week went better than mine. Truly. I have no idea how you were able to sleep - did you bribe the nurses to not check in on you every hour? . And I totally get what you're saying, obviously - my issue is that the initial phases of suck get played down, when there should be a very honest up-front warning that the first week or two can be absolutely excruciating. Mine 1000% was.

That said, second week, and really the last 2 days, are night and day different in terms of pain. Which someone said would happen, with first 2-3 weeks being the worst. The reason I haven't updated my diary is because there's really nothing noteworthy other than me settling into a routine, getting stronger and watching the inflammation go down. There is still pain, but much more manageable now.

[we.live.once]

If you noticed, the people who said it wasn't that painful are people who had their surgeries years ago or months ago (or people who never even had the surgery). The people like me who had their surgery fresh on their mind remember the pain and it was no joke painful af.

I think people forget about the pain anyway, regardless how bad it was.

I agreed. Forgetting pain is a kind of selfprotection