Limb Lengthening Forum

Please login or register.

Login with username, password and session length
Advanced search  
Pages: [1]   Go Down

Author Topic: A friendly reminder/Word of warning  (Read 12012 times)

0 Members and 1 Guest are viewing this topic.

programdude

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 888
A friendly reminder/Word of warning
« on: June 09, 2017, 01:37:16 AM »

I've barely been checking or posting here, as fortunately both me and my life are very much past the recovery phase. The number one thing that I feel needs to be emphasized is that recovery time CAN take way longer than the estimates most people/dr.'s give. If I had a rigid schedule I would have been screwed- If I viewed certain people finding out as unacceptable I would have been screwed.

While many have planned to a fairly tight schedule and been fine, even going with the best dr., vigorously stretching, and doing absolutely everything you're supposed to- There is no guarantee you'll be fine in the time needed. I will say I am an outlier in terms of my recovery time, but it took months upon months to walk with any semblance of normalcy. With a good dr. I think long term everyone will be fine which is why I just wanted to pop in and remind the community of something that I emphasized often when I posted here more.
Logged
Dr. Paley Patient- Surgery completed successfully on July 22nd
My Diary for those who want a real play by play to know what to expect:http://www.limblengtheningforum.com/index.php?topic=733.0

Starting height: 5 8
End Height-:5 11 +

want2btall

  • Newbie
  • Offline Offline
  • Posts: 44
Re: A friendly reminder/Word of warning
« Reply #1 on: June 10, 2017, 01:37:52 AM »

May i know how long does it takes for you to fully recover?
Logged

Penguinn

  • Moderator
  • Sr. Member
  • ****
  • Offline Offline
  • Gender: Male
  • Posts: 1242
Re: A friendly reminder/Word of warning
« Reply #2 on: June 10, 2017, 12:17:14 PM »

I absolutely agree with what programdude said. For example, in my case (Precice 2), it'll take easily take me 10 months post-op to walk with a proper gait. While I did take things slowly at the start (in terms of weightbearing for callus), my recovery is still most definitely longer than it should be. I didn't have much pain or any complication (the only "complication" I had was my left leg initially being operated twice) even though I was mentally ready for them.

I have no problem with this because I set myself a huge time frame. If I had given myself only 6 months, I would've been absolutely screwed.

I think this especially applies for people doing big amounts.

Logged

programdude

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 888
Re: A friendly reminder/Word of warning
« Reply #3 on: June 11, 2017, 03:43:23 PM »

Yes, I think the difference between 6 Cms and 8 is gigantic for example.

While I honestly don't have a time frame because it was such a long and incremental process, 10 months + sounds right for me as well. Way more than 6 months post op for sure- And in my case it was essential to get out the rods because of the limp they caused, and then my fracture.

While it was basically a lot of bad luck its a prime example to plan for the worst even when working with the best.
Logged
Dr. Paley Patient- Surgery completed successfully on July 22nd
My Diary for those who want a real play by play to know what to expect:http://www.limblengtheningforum.com/index.php?topic=733.0

Starting height: 5 8
End Height-:5 11 +

YungGud

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 301
Re: A friendly reminder/Word of warning
« Reply #4 on: June 12, 2017, 11:11:59 AM »

So ,do you advise lengthen 8 cm or better stay away from that amount of lengthening
Logged
Height 5 ft 10 ( 178)
Goal 6 ft 2
wingspan 6 ft 2 (188)

Penguinn

  • Moderator
  • Sr. Member
  • ****
  • Offline Offline
  • Gender: Male
  • Posts: 1242
Re: A friendly reminder/Word of warning
« Reply #5 on: June 12, 2017, 11:31:14 AM »

I say unless you're REALLY short, don't do 8cms.
Logged

YellowSpike

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 1349
Re: A friendly reminder/Word of warning
« Reply #6 on: June 12, 2017, 04:34:16 PM »

Agree with PD and Penguin. I did 7cm, and it was pretty tough (the whole process, that is).

I'm honestly super, SUPER lucky that I was able to work from home for about 4 months after I finished lengthening (which in itself took 3.5 months, including a month of pre-training). I was even luckier that I got paid my whole salary the entire time doing it. If I had to start working right after lengthening, I would have been royally screwed, because my walking was atrocious. My walking honestly didn't even begin look normal again until about a year post-op, and even then, my gait was still off (I'd say it took two years post-op to have perfect walking again and pretty good running/jogging).

I feel like a lot of the older diaries on here (and the old forum) really downplay how long the recovery process is. I still haven't taken my rods out, and I honestly just might leave them in, because they really don't bother me. I know it's not ideal, but I honestly don't want to have to deal with more surgery, scarring, recovery time (although less), etc.

I think people need to exercise extreme caution and planning when going beyond 6cm in one segment/procedure.
Logged

IwannaBeTaller

  • Sr. Member
  • ***
  • Offline Offline
  • Posts: 824
Re: A friendly reminder/Word of warning
« Reply #7 on: June 12, 2017, 04:55:22 PM »

I suspect this might be a total dealbreaker for many guys hoping to do LL, one that is not discussed as much as other aspects of it. No matter how we hypothize it might work, a lot of guys simply aren't gonna be able to pause their jobs for 4 or 5 months without becoming unemployed. Losing your job will be unacceptable for too many people, especially in regions with a bad economic situation.
Logged
It's a long way to find peace of mind, peace of mind
It's a long way to find peace of mind, peace of mind.

YellowSpike

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 1349
Re: A friendly reminder/Word of warning
« Reply #8 on: June 12, 2017, 05:01:27 PM »

I suspect this might be a total dealbreaker for many guys hoping to do LL, one that is not discussed as much as other aspects of it. No matter how we hypothize it might work, a lot of guys simply aren't gonna be able to pause their jobs for 4 or 5 months without becoming unemployed. Losing your job will be unacceptable for too many people, especially in regions with a bad economic situation.

Agreed.

I was able to use short-term disability for the lengthening process at full salary, and then allowed to work from home after that. I was very, very fortunate. Most situations would not work out nearly as well as mine. PD has his own business, so he was fortunate in that regard in terms of schedule flexibility.
Logged

google42

  • Full Member
  • **
  • Offline Offline
  • Posts: 210
Re: A friendly reminder/Word of warning
« Reply #9 on: June 13, 2017, 12:02:53 AM »

I think a lot of people assume that you just gather the money for surgery ($20-$100 thousand), and just somehow  take like 6-9 months of time out of your regular life, then your set. They don't realize that it's probably gonna be much harder to get this surgery done if they are not rich and don't own a business.

saving up just for the surgery will not be enough because you got to take into consideration your complications you might have, accommodation, and the extra recovery time where you may need extra money because you probably won't be working. Then there's worrying about your job that you have take time off from and not knowing if you'll be able to go back or get a paid leave while your recovering. You really have to get your   together before doing this surgery.
Logged

crimsontide

  • Sr. Member
  • ***
  • Offline Offline
  • Posts: 1171
Re: A friendly reminder/Word of warning
« Reply #10 on: June 13, 2017, 07:39:30 AM »

rods  definitely hinder function

dont  believe  it when a dr says its  no difference. there's a difference. get the rod removed
Logged

YellowSpike

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 1349
Re: A friendly reminder/Word of warning
« Reply #11 on: June 13, 2017, 12:41:53 PM »

rods  definitely hinder function

dont  believe  it when a dr says its  no difference. there's a difference. get the rod removed

Never said that any doctor said that. Dr. R said that I "can" leave them in and for the most part should be fine, but that it's not totally ideal. My knee pain is finally under control, so at least now I know the rods weren't causing that (it was muscle imbalances and tightness, which I fixed via PT).

I'll probably remove them next year (2018). I just am dreading having to deal with more scarring. I know I can always get them fixed down the road, but still. I might just leave them in, I don't know. I just don't think about it too much.
Logged

Mtall

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 173
Re: A friendly reminder/Word of warning
« Reply #12 on: June 15, 2017, 06:31:48 PM »

I absolutely agree with what programdude said. For example, in my case (Precice 2), it'll take easily take me 10 months post-op to walk with a proper gait. While I did take things slowly at the start (in terms of weightbearing for callus), my recovery is still most definitely longer than it should be. I didn't have much pain or any complication (the only "complication" I had was my left leg initially being operated twice) even though I was mentally ready for them.

I have no problem with this because I set myself a huge time frame. If I had given myself only 6 months, I would've been absolutely screwed.

I think this especially applies for people doing big amounts.

Has this affected your college plans, btw? Have you got in?
Logged

Penguinn

  • Moderator
  • Sr. Member
  • ****
  • Offline Offline
  • Gender: Male
  • Posts: 1242
Re: A friendly reminder/Word of warning
« Reply #13 on: June 16, 2017, 07:48:03 PM »

Has this affected your college plans, btw? Have you got in?

I got in, and I can walk with what I'd call a 70% normal gait right now as opposed to the horrid penguin walk I did a few weeks ago. College is a month away and my gait should improve by then.
Logged

goldenegg

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 182
Re: A friendly reminder/Word of warning
« Reply #14 on: June 18, 2017, 02:37:53 AM »

also agree with PD's advice. great advice from him as usual IMO. consolidation and/or recovery sometimes take really long for some people and I don't think there's any way to know beforehand if you'll be one of the lucky ones to recover fast. and that's assuming no complications which can make the process even longer

also agree with others that there's a world of a difference in recovery doing 6 vs 8 cms.  it may only be a 2cm difference to people who havent done LL, but it really can make recovery exponentially longer
Logged

programdude

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 888
Re: A friendly reminder/Word of warning
« Reply #15 on: June 21, 2017, 01:36:33 PM »

I think a lot of people assume that you just gather the money for surgery ($20-$100 thousand), and just somehow  take like 6-9 months of time out of your regular life, then your set. They don't realize that it's probably gonna be much harder to get this surgery done if they are not rich and don't own a business.

saving up just for the surgery will not be enough because you got to take into consideration your complications you might have, accommodation, and the extra recovery time where you may need extra money because you probably won't be working. Then there's worrying about your job that you have take time off from and not knowing if you'll be able to go back or get a paid leave while your recovering. You really have to get your crap together before doing this surgery.
This is the mindset I hope to dispel. People are so caught up on the up front costs that they can make them out to be the only barrier of entry in their mind. I don't blame people for focusing on the cash and the amount of pain the process induces, but I do want to hammer home how much more there is to it.

Its also important people know the difference between 6 and 8 CM. Not that I think you shouldn't do 8 CM if your hearts set on it- Many might not consider 6 CM to be worth it in general when considering the costs- But its very important to weigh the factors.
Logged
Dr. Paley Patient- Surgery completed successfully on July 22nd
My Diary for those who want a real play by play to know what to expect:http://www.limblengtheningforum.com/index.php?topic=733.0

Starting height: 5 8
End Height-:5 11 +

Bander72

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 750
Re: A friendly reminder/Word of warning
« Reply #16 on: June 21, 2017, 02:00:19 PM »

Its very difficult to not consider doing high amounts when going to a high end doctor like paley as you want to get your moneys worth. So if you do decide for doing big amounts like 8 cm then you need mentally prepare yourself for a long recovery time as that is what is likely to happen.
Logged
Bander72: Banned for Impersonating A Dr (fake Dr.Monegal)  account

biggerdreams

  • Jr. Member
  • *
  • Offline Offline
  • Posts: 196
Re: A friendly reminder/Word of warning
« Reply #17 on: June 22, 2017, 05:56:33 AM »

Agreed.

I was able to use short-term disability for the lengthening process at full salary, and then allowed to work from home after that. I was very, very fortunate. Most situations would not work out nearly as well as mine. PD has his own business, so he was fortunate in that regard in terms of schedule flexibility.

can you expand on how you got short-term disability during this process? or pm me if you are uncomfortable sharing publicly
Logged

OverrideYourGenetics

  • Jr. Member
  • *
  • Offline Offline
  • Gender: Male
  • Posts: 192
  • OverrideYourGenetics.com (no PMs, please email me)
Getting short-term disability
« Reply #18 on: February 09, 2018, 10:50:14 PM »

can you expand on how you got short-term disability during this process? or pm me if you are uncomfortable sharing publicly

Even though CLL is an elective procedure, the physical therapy that follows may be eligible for short-term disability benefits. Also, see if you have other conditions that can be improved though physical therapy, such as back pain.
Logged
My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

Trevor.P

  • Newbie
  • Offline Offline
  • Posts: 50
Re: A friendly reminder/Word of warning
« Reply #19 on: October 16, 2018, 01:03:36 AM »

So the best thing is not to do this operation?

I talked to Paley about this and he did not want more than 5 cm in femur, he replied that in 4-6 months after stopping to lengthen he could go back to sports.

So what to believe?
Logged

Trevor.P

  • Newbie
  • Offline Offline
  • Posts: 50
Re: A friendly reminder/Word of warning
« Reply #20 on: October 16, 2018, 10:16:00 AM »

So the best thing is not to do this operation?

I talked to Paley about this and he did not want more than 5 cm in femur, he replied that in 4-6 months after stopping to lengthen he could go back to sports.

So what to believe?


I want to say that my goal is not greater than 5cm femur
Logged

programdude

  • Sr. Member
  • ***
  • Offline Offline
  • Gender: Male
  • Posts: 888
Re: A friendly reminder/Word of warning
« Reply #21 on: September 15, 2019, 09:05:23 AM »

So the best thing is not to do this operation?

I talked to Paley about this and he did not want more than 5 cm in femur, he replied that in 4-6 months after stopping to lengthen he could go back to sports.

So what to believe?

Heres the thing, 5 CM is a world apart from 8. In my case I was not even normally walking etc in that time frame(though I personally met and know people who were). From my perspective it is ludicrous to expect that you can return to sports with any semblance of normalcy in that time frame, but I wouldn't be so dismissive as to call it impossible by any stretch. For all I know if I lengthened 5 I wouldn't have had complications and my recovery would have been swifter, perhaps even at 6 CM.

Factors that can help your prospects of a speedy and (near) full recovery are:
Amount lengthened- Tricky since its hard to resist doing as much as possible when you have already taken the plunge. Take it from me though, 1-2 CM can be a lot more manageable.

Physilogical luck- Theres really no other way to put it. Even in my case of being fit and diligent with stretching etc. my body just did not bounce back nearly as quickly as others who did similar amounts. I've compared diaries and its clear the experience can be night and day different from person to person.

Having help with you to assist with stretching. Aside from the aids I had briefly and some of the girls I had over, I didn't generally have anyone around for the more intense stretches requiring two people. Going with a family member etc. is definitely ideal but in a lot of peoples cases not viable.

I definitely feel like Dr.'s really downplay the recovery process, either disingenuously, or mentally relegating poor outcomes as aberrant. I made this thread not to scare people, or dissuade them outright, especially considering I am someone who is fully satisfied with my results despite a rough recovery and my fracture, but to keep them realistic while planning, and of course that there's always the possibility of a set back that really skews your plans.
Logged
Dr. Paley Patient- Surgery completed successfully on July 22nd
My Diary for those who want a real play by play to know what to expect:http://www.limblengtheningforum.com/index.php?topic=733.0

Starting height: 5 8
End Height-:5 11 +

GlassHalfFull

  • Visitor
  • Offline Offline
  • Posts: 7
Re: A friendly reminder/Word of warning
« Reply #22 on: September 29, 2019, 12:17:36 AM »

Factors that can help your prospects of a speedy and (near) full recovery are:
Amount lengthened- Tricky since its hard to resist doing as much as possible when you have already taken the plunge. Take it from me though, 1-2 CM can be a lot more manageable.

Did you mean lengthening 1-2cm less (e.g. doing 6cm instead of 8cm) is likely to significantly reduce the complications?

Separate to that but related to the main topic on recovery time, would you be able to give us a timeline of how long it took for you to recover starting from the surgery? (Noting that this timeline will vary from individual to individual).

I think it would be very useful to also know how long it took you to complete all the phases (i.e. distraction phase, consolidation phase, post-consolidation phase, recovery phase up until rod removal and normal gait) if you would be able to share.

If I may ask one more question, which of these phases would normally require one to take time off work (assuming that she or he could work remotely)?

I read your other post re consolidating and summarising your experience, really grateful for it (and your generosity with your time and energy) and very much looking forward to reading it.
Logged
Pages: [1]   Go Up