Quote from: uponly on February 16, 2023, 01:14:14 PMHaving 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.
Is this surgery really excruciatingly painful?
Quote from: uponly on February 16, 2023, 01:14:14 PMHaving 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.
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.
Quote from: Siegfried on February 16, 2023, 01:26:55 PMObviously 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.
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.
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.
Doing LL definitely sucks. If you got the wrong idea from my posts, sorry about that.
Quote from: RealLostSoul on February 16, 2023, 12:30:30 PMPeople 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 
Quote from: uponly on February 16, 2023, 04:54:55 PMSiegfrid, 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!
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.
Quote from: LengtheningDream on February 17, 2023, 05:03:43 AMIs 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.
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