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[TakingAction]

Hey Y'all, I am going to start my LL journey with Dr Paley. My surgery is scheduled on Nov 9 2021. Internal femurs. I'll be happy to receive help, suggestions, advice, and will keep you guys updated, ups and downs, during the course of lengthening, to help future LL'ers in any way I can. This journal can probably help both you and me. I am going to hire a nurse for first 15-18 days to assist me with moving around and stuff.

Currently emailing some home owners for short-term 3 month rentals or condo in West Palm Beach. Any suggestions for me?

[ryand2021]

Paley has a fantastic team and a well-managed PT facility so you will do very well there.

I'd recommend stay at one of the preferred hotels (Homewood, etc.) because 1. You will have a daily shuttle to PT 2. You will meet other patients who will provide emotional support to your journey. Not everyone is friendly or down to earth but you will have a good chance making a few friends.

Your mental health will take a huge hit in the first few weeks as your body will struggle to adjust to the new normal. Try to practice standing & moving with a walker ASAP. Being able to move with a walker will be a game changer.

If your recovery is normal you don't need a full-time caregiver for that long. Try to get 24-hour care your first week out of hospital and once you feel comfortable going to restroom on your own, you can reduce the shift to daytime only and progressively reduce the hours.

Make sure you have family & friends to talk to during lengthening as you need a sufficient communication channel with others to help your mental health.

Good luck.

[TakingAction]

Paley has a fantastic team and a well-managed PT facility so you will do very well there.

I'd recommend stay at one of the preferred hotels (Homewood, etc.) because 1. You will have a daily shuttle to PT 2. You will meet other patients who will provide emotional support to your journey. Not everyone is friendly or down to earth but you will have a good chance making a few friends.

Your mental health will take a huge hit in the first few weeks as your body will struggle to adjust to the new normal. Try to practice standing & moving with a walker ASAP. Being able to move with a walker will be a game changer.

If your recovery is normal you don't need a full-time caregiver for that long. Try to get 24-hour care your first week out of hospital and once you feel comfortable going to restroom on your own, you can reduce the shift to daytime only and progressively reduce the hours.

Make sure you have family & friends to talk to during lengthening as you need a sufficient communication channel with others to help your mental health.

Good luck.

Thank you for your comments. Handicap-accessible shuttle is certainly a plus for hotels. I'm interested in saving some money if possible. Which one would you say it's more difficult: to get to your bed from a wheelchair OR to get to a taxi/uber from a wheelchair? Do I need a caretaker to help me get into a sedan? If the difficulty level is about the same, then, I'd consider booking Airbnb which is more a lot affordable than the price of the hotel even including the taxi cost.

[ryand2021]

If this is the case I will recommend stay at the hotel during first few weeks until you're able to comfortably stand up and make a few steps with a walker. Until then you will probably need an accessible vehicle to transfer you and the wheelchair around. Paley has the accessible shuttle, but I'm not sure the cost of accessible taxi. During this time you will need a caregiver at least during daytime.

Once you can stand, move with a walker and slowly transfer in & out of vehicle without a wheelchair, you no longer need an accessible vehicle and you will leave your wheelchair at home when you go to PT. At that point you may move to a cheaper Airbnb. If you travel alone, you will still need daycare on an ad hoc basis such as cleaning, helping you pack stuff, etc. Staying at a hotel may help you save some of these charges because hotel staff can help you clean in some of the cases.

Getting into a car is slightly more difficult than getting onto a wheelchair from your bed because you can "slide" from bed to chair, but you're usually unable to "slide" from wheelchair to a car seat. However once you can stand up from your bed with a walker, move around, and use restroom independently, wheelchair will be mostly abandoned unless it's long distance transfers (in an airport terminal, etc.).

[TakingAction]

If this is the case I will recommend stay at the hotel during first few weeks until you're able to comfortably stand up and make a few steps with a walker. Until then you will probably need an accessible vehicle to transfer you and the wheelchair around. Paley has the accessible shuttle, but I'm not sure the cost of accessible taxi. During this time you will need a caregiver at least during daytime.

Once you can stand, move with a walker and slowly transfer in & out of vehicle without a wheelchair, you no longer need an accessible vehicle and you will leave your wheelchair at home when you go to PT. At that point you may move to a cheaper Airbnb. If you travel alone, you will still need daycare on an ad hoc basis such as cleaning, helping you pack stuff, etc. Staying at a hotel may help you save some of these charges because hotel staff can help you clean in some of the cases.

Getting into a car is slightly more difficult than getting onto a wheelchair from your bed because you can "slide" from bed to chair, but you're usually unable to "slide" from wheelchair to a car seat. However once you can stand up from your bed with a walker, move around, and use restroom independently, wheelchair will be mostly abandoned unless it's long distance transfers (in an airport terminal, etc.).

That’s helpful to know. You mentioned that it takes a few weeks to stand up from bed with a walker, move around, and use restroom independently. But how many weeks did it take you and other people to do that from the day of surgery? Do you think it’d be fine to take regular Uber without the accessible feature one month after the femur surgery?

[ryand2021]

It's hard to tell. It could be as fast as 1 week after surgery or as slow as a month.

When Stryde was still a thing recovery was faster (on average) because PT would push you to practice walking with a walker almost immediately after you get out of the hospital. For P2.2, PT has become a lot more conservative and people generally wouldn't want to "rush" into walking until they are much more comfortable to do so.

At Paley they will teach you to walk with a walker even with P2.2. You just need to put some of your body weight on your arms. They generally discourage "hopping".

If your recovery is normal and there are no major complications, 1 month post surgery you should be able to get into a regular Uber with a walker. Try to get a bigger car such as SUV and avoid cars with low seats (convertibles, etc.)

[PreMalone]

楼主刚在另一个帖子看到你，我也是在美国的中国人，准备明年去Parley做。会持续关注这个帖子

[TakingAction]

It's hard to tell. It could be as fast as 1 week after surgery or as slow as a month.

When Stryde was still a thing recovery was faster (on average) because PT would push you to practice walking with a walker almost immediately after you get out of the hospital. For P2.2, PT has become a lot more conservative and people generally wouldn't want to "rush" into walking until they are much more comfortable to do so.

At Paley they will teach you to walk with a walker even with P2.2. You just need to put some of your body weight on your arms. They generally discourage "hopping".

If your recovery is normal and there are no major complications, 1 month post surgery you should be able to get into a regular Uber with a walker. Try to get a bigger car such as SUV and avoid cars with low seats (convertibles, etc.)

It sounds like it's safer to stay on the wheelchair for the first month. Were you able to find any wheelchair Uber in West Palm Beach or most Uber taxi are just sedan/SUV? Was there any general advice you have that you wish you knew before you do the surgery? I saw one patient talking about how it's literally like pain in the ass to take number 2 during the first few days after the surgery. Shall I buy a portable toilet like the one below now to bring it to my hospital room?

https://www.amazon.com/dp/B09B3LJV18/ref=sspa_dk_detail_3?psc=1&pd_rd_i=B09B3LJV18&pd_rd_w=JwRC6&pf_rd_p=887084a2-5c34-4113-a4f8-b7947847c308&pd_rd_wg=kcTp1&pf_rd_r=M9Y7AHF2F0EKHP0DPE49&pd_rd_r=261df40a-b539-4d28-954a-ac4e16398224&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFXWTExSjRHVjYwRTYmZW5jcnlwdGVkSWQ9QTA2MjkzMzJEMVQzODczTjRTTzEmZW5jcnlwdGVkQWRJZD1BMDAwODY2NDJPRjlVT0JXU0pXNTkmd2lkZ2V0TmFtZT1zcF9kZXRhaWwmYWN0aW9uPWNsaWNrUmVkaXJlY3QmZG9Ob3RMb2dDbGljaz10cnVl

[TakingAction]

Cool! Have you decided which day you want to do the surgery? What's your height goal?

[ryand2021]

It's possible to find it, but will be quite expensive. I personally never booked accessible Uber because when I was on a wheelchair I just used hotel shuttle and avoided going anywhere other than hotel & PT.

Using restroom will be a problem in the beginning especially when you can't stand up from a wheelchair. That's why you may want to push yourself to practice standing and hopping with walker. Paley will tell you that standing and walking will actually help bone regeneration. Your PT will help you practice starting ~week 3. It will be very difficult or nearly impossible to navigate on a wheelchair on your own if your space is not designed to be accessible (some bathroom doors don't even fit wheelchair so you must use a walker). However, the No.2 thing is less about wheelchair but more about your digest system. When you're heavily drugged your body will not be fully functional that's why No.2 could be very difficult in the first few days.

As mentioned in my previous post, my advise is don't underestimate the tremendous mental impact you will go through in the first few weeks. It's hard to imagine that until you actually have completed the surgery. Lots of patients eventually stopped early not due to physical pain, but due to mental pain. It's critical to have some trusted friends you can talk and rant to who can "escort" you through first few weeks until your mood is fully adjusted.

[SuchLL]

If you do femurs, seating on wheelchair is not a fun experience for the first few weeks. Your legs will be swollen for at least 3 weeks and it’s really uncomfortable to sit on wheelchair or any chairs too long because you are putting more pressure on the back of your upper legs while sitting. It would be wise to live closer to Paley institute. I’m not sure if you’ve done research on cost of airbnb. It’s not cheap especially if you want to live closer and you don’t drive or have someone driving. And airbnb can be tricky. You have to make sure there’re no steps. I rented a single story house to avoid steps but there’s one single step in front of the door so my dad had to lift my wheelchair in & out. And since the house is not designed for wheelchair, I can’t even navigate to my room! (My dad again has to lift both me and my wheelchair a little bit to move me to my room…) My bathroom is also not big enough for wheelchair. I think airbnb is just too tricky. The main reason I’m renting it is I need a big place for my parents and my pets. Paley’s shuttles are free and wheelchair accessible, so it might actually be the cheaper option for you. I think they come every 20 mins so its super convenient. Last year Paley’s recommended hotel was 90 something a night, probably not a big deal comparing to the 100k surgery cost… And good luck with your surgery bro! I’m doing tibias so ill meet you in person in Nov!!

[TakingAction]

Thank you for all of your suggestions! Do you remember what time did you need to be at the hospital with Paley? I saw some people wrote 7am, 6am, or even 5am! My concern is that I won't have a good sleep before the surgery, and I might be put on a ventilator during the surgery if my body is not well-rested?

[ryand2021]

Thank you for all of your suggestions! Do you remember what time did you need to be at the hospital with Paley? I saw some people wrote 7am, 6am, or even 5am! My concern is that I won't have a good sleep before the surgery, and I might be put on a ventilator during the surgery if my body is not well-rested?

The hospital will call you a few days before the surgery and go over all the details.

Most people would not have a good sleep (or any sleep at all) the night before the surgery due to obvious reasons. This is not a problem. Ventilator is very unlikely unless you have a major complication.

[TakingAction]

Ok, what time did you or other Paley patient get up in the moring of the surgery day? 5am?

Also, I saw your questions on the post of Feb 19, which are very similar to my questions:

"If my company asks me to travel again in August & September, do you think I will have ample time to consolidate and resume walking? Probably will do tons of recovery workout and eat lots of food to speed it up.

In addition, as a 150lbs male, if I have the chance to get the largest nail (12.5, fatigue load is 146 lbs), I should be able to "barely walk" immediately after the lengthening period?"

I also have 151Ibs. Did you "barely walk" immediately after the lengthening period? How long did it take you to resume walking? I hope you can at least walk or take a few stairs at the airport and come back home without assistance.

[Raden]

Hey Y'all, I am going to start my LL journey with Dr Paley. My surgery is scheduled on Nov 9 2021. Internal femurs. I'll be happy to receive help, suggestions, advice, and will keep you guys updated, ups and downs, during the course of lengthening, to help future LL'ers in any way I can. This journal can probably help both you and me. I am going to hire a nurse for first 15-18 days to assist me with moving around and stuff.

Currently emailing some home owners for short-term 3 month rentals or condo in West Palm Beach. Any suggestions for me?

Any reasons why you don’t wanna wait for Stryde return?
I am also considering internal femur but using Precice i am afraid of:
1. Breaking the nail if accidentally putting too much weight on one leg (although i am only 137 lbs)
2. Not achieving maximum length 8cm with Precice. While with Stryde, achieving 8cm is like the norm.

[ryand2021]

Ok, what time did you or other Paley patient get up in the moring of the surgery day? 5am?

Also, I saw your questions on the post of Feb 19, which are very similar to my questions:

"If my company asks me to travel again in August & September, do you think I will have ample time to consolidate and resume walking? Probably will do tons of recovery workout and eat lots of food to speed it up.

In addition, as a 150lbs male, if I have the chance to get the largest nail (12.5, fatigue load is 146 lbs), I should be able to "barely walk" immediately after the lengthening period?"

I also have 151Ibs. Did you "barely walk" immediately after the lengthening period? How long did it take you to resume walking? I hope you can at least walk or take a few stairs at the airport and come back home without assistance.

No. With P2.2 you won't be allowed to walk independently even with the largest nail. This is because when you walk there is additional force being applied to your legs, which means your femur is taking more than 150 Ibs at a time. The fatigue load of the largest nail is 146 Ibs.

Breaking a nail "by accident" is rare because P2.2 nail has a built-in tolerance. With the largest nail the expectation is no more than 75lbs per leg, but if you accidentally put slightly more force than the recommended limit, the nail will still probably be fine as long as you don't do it repeatedly. The nail will be broken if you do something very very wrong (trying to jump, etc.) because the force far exceeds the fatigue load.

During the consolidation stage, Paley/Robbins will clear you for walking with a cane as soon as one of your femurs is reasonably consolidated. This may happen 1 month before you're officially cleared for full weightbearing. If you choose to return home immediately after the lengthening stage, you will need a walker.

[TakingAction]

Any reasons why you don’t wanna wait for Stryde return?
I am also considering internal femur but using Precice i am afraid of:
1. Breaking the nail if accidentally putting too much weight on one leg (although i am only 137 lbs)
2. Not achieving maximum length 8cm with Precice. While with Stryde, achieving 8cm is like the norm.

It seems uncertain when the Stryde will return. Also, I don't mind to be on walker for multiple months as I always work from home even before COVID.

For the 8cm norm, where did you get that data? Is that anecdotal data or information you got from a survey with a large sample size?

[Raden]

It seems uncertain when the Stryde will return. Also, I don't mind to be on walker for multiple months as I always work from home even before COVID.

For the 8cm norm, where did you get that data? Is that anecdotal data or information you got from a survey with a large sample size?

Only by reading several Stryde diares.

You must not have read a lot of journals then.

Edit: To be helpful and not just tell you to look for yourself, let's take a look at all the finished or nearly finished Stryde cases on just the first page of the patient experiences subform as of right now. They are basically all bilateral femur cases.

• m7liam, 8cm
• SuchLL, 7.4cm and still going
• IFS, 3 inches (7.5cm)
• Movie, 8cm
• Asian, 6.5cm and still going
• SNC, 8cm
• BoneStretching, 8cm

Also keep in mind there are tons of people who do this and don't even know the forum exists, let alone post a journal on here.

SuchLL and Asian achived 8cm. Myevolution achived 8cm femur and 7cm on tibia with Stryde. Not reaching full 8cm on femur is one of my concerns using precice now instead of waiting for Stryde later. I still might change my mind though.

[TakingAction]

Only by reading several Stryde diares.

SuchLL and Asian achived 8cm. Myevolution achived 8cm femur and 7cm on tibia with Stryde. Not reaching full 8cm on femur is one of my concerns using precice now instead of waiting for Stryde later. I still might change my mind though.

You have data to support the success of "8cm norm" of Stryde. However, you don't have data to support the failure of achieving 8cm by Precice, correct? If yes, then how do you prove that the Precice is not good at achieving 8cm?

[Raden]

You have data to support the success of "8cm norm" of Stryde. However, you don't have data to support the failure of achieving 8cm by Precice, correct? If yes, then how do you prove that the Precice is not good at achieving 8cm?

I didn't say that precice won't make 8cm in femur. It's easier to find stryde diaries achieving 8cm on femur than precice diaries achieving 8cm. Also keep in mind, at least there are two persons achieving more than 6cm on tibia with stryde; Myevolution achieves 7cm, and one of dr M patients achieves 6,5cm (from his Instagram).

[ryand2021]

I didn't say that precice won't make 8cm in femur. It's easier to find stryde diaries achieving 8cm on femur than precice diaries achieving 8cm. Also keep in mind, at least there are two persons achieving more than 6cm on tibia with stryde; Myevolution achieves 7cm, and one of dr M patients achieves 6,5cm (from his Instagram).

P2.2 has the same mechanism as Stryde so technically the likehood of 8cm is the same. However, P2.2 patients may have more depression and challenges due to lack of mobility, which may prompt them to end the procedure early (usually at 5-7cm) even though their physical status still allows additional lengthening. For both P2.2 and Stryde the stretching requirement is the same - if your flexibility is unsatisfactory to certain point you will be asked to stop lengthening.

[Raden]

P2.2 has the same mechanism as Stryde so technically the likehood of 8cm is the same. However, P2.2 patients may have more depression and challenges due to lack of mobility, which may prompt them to end the procedure early (usually at 5-7cm) even though their physical status still allows additional lengthening. For both P2.2 and Stryde the stretching requirement is the same - if your flexibility is unsatisfactory to certain point you will be asked to stop lengthening.

That makes sense. Thank you!

[TakingAction]

I have arrived in West Palm Beach, FL! If you can meet up, please let me know! FIVE DAYS COUNTDOWN before surgery day.

[ryand2021]

Good luck! Paley is one of the most skilled LL doctors in the world and I'm sure you will receive the best care.

Enjoy the last few days before the big event in your life. Take a long walk on the beach - It will take a while before you can do this again!

[Masteryourlife]

Wish you the best man !!!!!!
You choosed the best and you will do great

[TakingAction]

Thank you so much!

[L8GrowthSpurt]

Good luck, bro! Wishing you the best 👍💪

[Arcon]

All the very best wishes for a quick recovery bro, keep us posted when you can.

[TakingAction]

Thank you. Was concerned about unable to wake up at early hours of 4am but it turned out that I just woke up at 3:14am. (and I had a pretty good 6 hours of sleep). I’m now getting ready for the surgery.

[Raden]

’m now getting ready for the surgery.

You are in great hands and they will protect you!

[PerfectBody]

Good luck!