Limb Lengthening Forum
Limb Lengthening Surgery => Limb Lengthening Patients Experiences => Topic started by: TakingAction on October 17, 2021, 07:56:23 PM
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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?
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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.
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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.
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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.).
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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?
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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.)
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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 :)
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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
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Cool! Have you decided which day you want to do the surgery? What's your height goal?
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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.
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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!!
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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?
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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.
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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.
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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.
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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.
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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?
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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.
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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?
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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).
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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.
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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!
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I have arrived in West Palm Beach, FL! If you can meet up, please let me know! FIVE DAYS COUNTDOWN before surgery day.
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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!
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Wish you the best man !!!!!!
You choosed the best and you will do great
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Thank you so much!
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Good luck, bro! Wishing you the best 👍💪
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All the very best wishes for a quick recovery bro, keep us posted when you can.
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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.
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’m now getting ready for the surgery.
You are in great hands and they will protect you!
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Good luck!
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Thanks! I just had the femur surgery today. It went well! The nurse told me to take both Tylenol and oxy but I asked her to only give me Tylenol because oxy can be addictive. She agreed. So far, my pain level is low enough that I haven’t needed oxy since I had surgery 10 hours ago. Let’s see how long can I survive by only taking low-risk Tylenol. Has anyone gone through the whole first hell week after surgery without taking any oxy before? Is it even possible?
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Good luck dude! Did you have any vomiting/nausea when waking up after the surgery?
From memory one of the patients Cyborg4Life interviewed also did not take any oxy at all after the surgery (but I could be wrong)
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Hello TakingAction,
It's possible to never use oxycodone after the surgery and throughout the lengthening process. I had my surgery done in August and I haven't taken any oxy so far. My pain level was minimal post-op. In fact, I asked the nurse to stop injecting me with Toradol because the injection pain was the only pain I felt.
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Thanks! I just had the femur surgery today. It went well! The nurse told me to take both Tylenol and oxy but I asked her to only give me Tylenol because oxy can be addictive. She agreed. So far, my pain level is low enough that I haven’t needed oxy since I had surgery 10 hours ago. Let’s see how long can I survive by only taking low-risk Tylenol. Has anyone gone through the whole first hell week after surgery without taking any oxy before? Is it even possible?
I had oxy for three weeks during femoral lengthening last year and oxy still works for me this year. You probably won’t be addicted to oxy since doctor will only give you limited amount to take after discharge. I knew someone who didn’t take any pain meds during entire lengthening process, not even tylenol.
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I had oxy for three weeks during femoral lengthening last year and oxy still works for me this year. You probably won’t be addicted to oxy since doctor will only give you limited amount to take after discharge. I knew someone who didn’t take any pain meds during entire lengthening process, not even tylenol.
How was your experience with xeralto? Did you get any side effects? You took it for over 6 months in total right?
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Day 2: still haven’t taken any oxy yet. We’ll see how bad the pain is when I move. I was feeling nauseous for an hour after I woke up from surgery yesterday, but it’s only an hour.
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Day 2: I just did my first PT, and I passed out….it might be the blood loss from surgery that’s causing this passing out. But I recovered after about an hour.
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Day 2: I just did my first PT, and I passed out….it might be the blood loss from surgery that’s causing this passing out. But I recovered after about an hour.
It's normal. Don't push too hard - your body needs time to adjust.
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It's normal. Don't push too hard - your body needs time to adjust.
Really? Did you also pass out on the day after surgery? The confusing part is that one nurse is telling me it’s normal and 90% of the patients passing out. But then an OP and another nurse told me that less than 20% of the patients passing out….hopefully I’ll have a full recovery in the end..
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Day 2: I just did my first PT, and I passed out….it might be the blood loss from surgery that’s causing this passing out. But I recovered after about an hour.
I would try oxy before PT next time. Fighting pain or discomfort takes a lot energy and can cause more stress and make you very tired. It’s actually bad for healing and recovery. Last year I didn’t feel much pain after the surgery but the nurse said I didn’t look good and I should take oxy. I didn’t expect oxy to make much difference because I thought I was doing ok. It turned out oxy made huge difference! I started to eat more, exercised more, and felt much better.
I only knew one person passed out during PT last year because he didn’t eat anything before PT. It’s possible that you didn’t eat enough and at the same time used too much energy to fight discomfort. Just try oxy next time you will be fine bro. Oxy can usually make people do better during PT sessions which helps recovery.
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How was your experience with xeralto? Did you get any side effects? You took it for over 6 months in total right?
I have diarrhea sometimes but doctor Robbins said xeralto shouldn’t cause diarrhea. I didn’t take xeralto last year because it’s not needed with stryde. With precice 2 we need to take it for about 6 months you are right…
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I would try oxy before PT next time. Fighting pain or discomfort takes a lot energy and can cause more stress and make you very tired. It’s actually bad for healing and recovery. Last year I didn’t feel much pain after the surgery but the nurse said I didn’t look good and I should take oxy. I didn’t expect oxy to make much difference because I thought I was doing ok. It turned out oxy made huge difference! I started to eat more, exercised more, and felt much better.
I only knew one person passed out during PT last year because he didn’t eat anything before PT. It’s possible that you didn’t eat enough and at the same time used too much energy to fight discomfort. Just try oxy next time you will be fine bro. Oxy can usually make people do better during PT sessions which helps recovery.
Ok, I’ll probably need to try oxy in the upcoming days. Hopefully it doesn’t hurt my liver or cause addiction. Dr. Robbins said that my nails can only support 50 pounds per leg. So I’m concerned that if my full body weight, which is 151 pounds, landed on my feet accidentally for 3 seconds, would that increase the risk of bending or breaking?
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I felt like passing out the first time I stood on my legs after surgery, almost did but I sat back down and it passed, after that I didn't feel that again, you might have pushed too hard the very first time, you're still under sedatives that can cause that.
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Ok, I’ll probably need to try oxy in the upcoming days. Hopefully it doesn’t hurt my liver or cause addiction. Dr. Robbins said that my nails can only support 50 pounds per leg. So I’m concerned that if my full body weight, which is 151 pounds, landed on my feet accidentally for 3 seconds, would that increase the risk of bending or breaking?
3 seconds occasionally should be safe. They told me the nails won’t be bent easily but I’m worried about bending my nails too… especially after knowing that one of Paley’s current patients has both his nails bending and he’s only 120lbs… PT will also use huge amount of force (greater than 50lbs for sure) to stretch your muscles but doctor Robbins said it’s safe. Who knows lol
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I would try oxy before PT next time. Fighting pain or discomfort takes a lot energy and can cause more stress and make you very tired. It’s actually bad for healing and recovery. Last year I didn’t feel much pain after the surgery but the nurse said I didn’t look good and I should take oxy. I didn’t expect oxy to make much difference because I thought I was doing ok. It turned out oxy made huge difference! I started to eat more, exercised more, and felt much better.
I only knew one person passed out during PT last year because he didn’t eat anything before PT. It’s possible that you didn’t eat enough and at the same time used too much energy to fight discomfort. Just try oxy next time you will be fine bro. Oxy can usually make people do better during PT sessions which helps recovery.
Some patients need blood transfusion due to blood loss. You're in a much better place.
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I felt like passing out the first time I stood on my legs after surgery, almost did but I sat back down and it passed, after that I didn't feel that again, you might have pushed too hard the very first time, you're still under sedatives that can cause that.
lmao I puked the first time I stood up. I think it was the Oxy
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I haven’t even taken the oxy yet because of concern of the side effects. What do you all think about Tramadol? Do you think that it’s less risky than oxy?
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3 seconds occasionally should be safe. They told me the nails won’t be bent easily but I’m worried about bending my nails too… especially after knowing that one of Paley’s current patients has both his nails bending and he’s only 120lbs… PT will also use huge amount of force (greater than 50lbs for sure) to stretch your muscles but doctor Robbins said it’s safe. Who knows lol
Yeah I don’t understand why do they want us to risk bending and walk on walker instead of just do PT on a table or walking in the swimming pool which are so much safer to achieve the same goals, right?
Is the first week hell week? Or the second week will get even worse? I still haven’t had number 2 yet, and this inability to get toxic out is making me feel that I’m stuck in hell, not to mention the swollen femurs and pain the ass…
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Yeah I don’t understand why do they want us to risk bending and walk on walker instead of just do PT on a table or walking in the swimming pool which are so much safer to achieve the same goals, right?
Is the first week hell week? Or the second week will get even worse? I still haven’t had number 2 yet, and this inability to get toxic out is making me feel that I’m stuck in hell, not to mention the swollen femurs and pain the ass…
I’m 157lbs and I only use walker during PT because they kinda force me to use it. They say it’s good for bone generation but I don’t want to live in fear. I also don’t believe walker would make big difference in bone generation because we can only “hop”, not walk. It seems I’m the only person worried about bending nails though. Other patients I talked to were not as nervous…
When I did femurs I think the first 3-4 days were the worst. The second week was better but still bad because I hadn’t recovered from the surgery and at the same time I had to start lengthening which caused more tissue injuries. It’s just me and I don’t know about others though.
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I’m 157lbs and I only use walker during PT because they kinda force me to use it. They say it’s good for bone generation but I don’t want to live in fear. I also don’t believe walker would make big difference in bone generation because we can only “hop”, not walk. It seems I’m the only person worried about bending nails though. Other patients I talked to were not as nervous…
When I did femurs I think the first 3-4 days were the worst. The second week was better but still bad because I hadn’t recovered from the surgery and at the same time I had to start lengthening which caused more tissue injuries. It’s just me and I don’t know about others though.
Have your nail had any problem so far? I’m worried about bending too because I didn’t get the 75 pound one.
You mentioned that the first 3-4 days are the worst of the whole multiple month process. Was it because of inability to poop? For me, all the pain is manageable so far but I’m very uncomfortable about the inability to poop as I feel that I’m adding toxicity in my body from all the foods I’m eating from the hospital. I usually poop once or even twice a day before the surgery. So no poop for 2 days feels terrible.
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Have your nail had any problem so far? I’m worried about bending too because I didn’t get the 75 pound one.
You mentioned that the first 3-4 days are the worst of the whole multiple month process. Was it because of inability to poop? For me, all the pain is manageable so far but I’m very uncomfortable about the inability to poop as I feel that I’m adding toxicity in my body from all the foods I’m eating from the hospital. I usually poop once or even twice a day before the surgery. So no poop for 2 days feels terrible.
I’m only at 1.8 cm so far. I’m worried about bend mostly because of PT. They use huge amount of force to stretch my calf. I have to hold the message table tight otherwise my whole body would be moved…. That’s how much force they use on my legs and it always makes me scared.
The first 3-4 days were worst mostly because my legs were super heavy and I couldn’t move them easily. They were also swelling badly. Incisions also felt like burning so I iced my incisions almost 24 hours a day.
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I have diarrhea sometimes but doctor Robbins said xeralto shouldn’t cause diarrhea. I didn’t take xeralto last year because it’s not needed with stryde. With precice 2 we need to take it for about 6 months you are right…
I meant 6 months for both segments. You are being asked to take it for 6 months for just tibias?
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I meant 6 months for both segments. You are being asked to take it for 6 months for just tibias?
Yes they told me to take it until full consolidation, which is about 6 months (3 months lengthening + 3 months consolidation)
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Day 3: I passed out AGAIN today during the morning PT. But I didn’t pass out during the afternoon PT. My legs are getting better now as they can more up & down and left & right now. Still haven’t taken number 2. I might need to try either coffee or the poop medicine to get it going. The only concern is that it’d be difficult to clean up if I take number 2 on my hospital bed instead of a regular toilet.
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Day 4: I had a better sleep (7 hours) last night due to less pain. So I even decided to skip the low-risk Tylenol for the first time this morning after surgery. But I’ll take it right before the PT later today to help me do better. Hopefully I don’t pass out today. I’ll certainly take it slow this time without rushing PT to reduce the risk of passing out. I feel lucky that I don’t have much pain, but also unlucky that I pass out more often than most people. I guess everyone is different but I believe that everyone will eventually all get better.
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Yeah, for both my CLL's i found Tramadol easier to stop using than Oxy, and Tramadol was almost as effective as Oxy for me.
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Day 4 new update (11:16am): I did it! Just finished a small PT session without passing out! And I’m moving on the wheelchair for the first time! Amazing improvement! This feels like the happiest day of the month because I thought I’d pass out again today. I wanted to thank my physical therapist Justine!
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Day 4 new update (11:16am): I did it! Just finished a small PT session without passing out! And I’m moving on the wheelchair for the first time! Amazing improvement! This feels like the happiest day of the month because I thought I’d pass out again today. I wanted to thank my physical therapist Justine!
Happy to hear you are doing great!!
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I'm really happy for your smooth operation, friend. I wish you a smooth recovery!
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Day 5: everything is good and normal. Today, I had my number 2 twice for first time since surgery. Also, I’m discharged from the hospital. The caregiver who picked me up from the hospital to my hotel was gorgeous like a Victoria Secret model. She gave me a ride to my hotel with her fancy Range Rover. She said that she used to work at a large corporation but started a caregiver company with a partner. She was probably referring to JP Morgan or some kind of large investment banks. The experience with this gorgeous lady also help remind me one of the key reasons of the surgery: to find a great and gorgeous wife after I become taller physically and mentally.
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Day 6: Today, I did a reflection on my surgery experience. Before the surgery, I had lots of ideas about what's life like after the surgery by reading journals from lots of other people on the forum. I thought I'd go through the similar experiences. However, it turned out that my experiences are so different from others.
Before the surgery, I thoughts:
1. I'll have a ton of pain like level 9 or 10 after surgery.
2. My brain won't work on any work or planning on my laptops.
3. I'll probably need to take oxy and possibly develop the risk of addiction.
After the surgery, what happened so far is that:
1. My pain level is 2-5, not like some other posts stating VERY PAINFUL on the forum.
2. My brain could actually work on pretty complex cognitive tasks just a few days if not a few hours after the surgery (especially with the help of just one cup of coffee)
3. I didn't even take oxy even after I moved to the hotel for more than a day and night.
Those experiences above are good surprises. So far, I really just had one small negative surprise, which is the passing out twice on the days right after surgery because of the surgery damage to my body. This negative surprise is very short-term and also positive too because I learned the value of life. Before I passed out, I took life for granted because I had never really passed out in a hospital with a nurse asking me "are you with me?" before. It felt like I was dead for a few seconds in a movie or something lol The passing-out experience taught me how amazing life is. After I recovered, the passing out reminded me that life is limited so we must do what matters to us. What truly matters to me is to find a wife to build a future big family. I also realized that all the seemingly huge discomfort/stress from my job is as tiny as a little star in the universe after you passed out and survived again.
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Hey TakingAction,
Amazing perspective. I am curious approximately how old you are if you're okay with sharing that. You are with one of the best and have great chances of a full recovery.
If you get a chance, can you ask Paley or Robbins about the probability of developing a pulmonary embolism? One in how many people get it and how many of those end up with severe long term problems or death? I am trying to consolidate these numbers for everyone to read in a different thread. I haven't had a chance to talk to Paley so just wanted to request you.
Thank you
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Day 6: Today, I did a reflection on my surgery experience. Before the surgery, I had lots of ideas about what's life like after the surgery by reading journals from lots of other people on the forum. I thought I'd go through the similar experiences. However, it turned out that my experiences are so different from others.
Before the surgery, I thoughts:
1. I'll have a ton of pain like level 9 or 10 after surgery.
2. My brain won't work on any work or planning on my laptops.
3. I'll probably need to take oxy and possibly develop the risk of addiction.
After the surgery, what happened so far is that:
1. My pain level is 2-5, not like some other posts stating VERY PAINFUL on the forum.
2. My brain could actually work on pretty complex cognitive tasks just a few days if not a few hours after the surgery (especially with the help of just one cup of coffee)
3. I didn't even take oxy even after I moved to the hotel for more than a day and night.
Those experiences above are good surprises. So far, I really just had one small negative surprise, which is the passing out twice on the days right after surgery because of the surgery damage to my body. This negative surprise is very short-term and also positive too because I learned the value of life. Before I passed out, I took life for granted because I had never really passed out in a hospital with a nurse asking me "are you with me?" before. It felt like I was dead for a few seconds in a movie or something lol The passing-out experience taught me how amazing life is. After I recovered, the passing out reminded me that life is limited so we must do what matters to us. What truly matters to me is to find a wife to build a future big family. I also realized that all the seemingly huge discomfort/stress from my job is as tiny as a little star in the universe after you passed out and survived again.
Hey TA , Glad hearing you are doing good .
Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?
The pain post-OP is something so debated and having a more linear updated review by latest CLL diares would be amazing .
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Hey TakingAction,
Amazing perspective. I am curious approximately how old you are if you're okay with sharing that. You are with one of the best and have great chances of a full recovery.
If you get a chance, can you ask Paley or Robbins about the probability of developing a pulmonary embolism? One in how many people get it and how many of those end up with severe long term problems or death? I am trying to consolidate these numbers for everyone to read in a different thread. I haven't had a chance to talk to Paley so just wanted to request you.
Thank you
In my early 30s.
So the probability of PE is 0.00% stated on the Paley guidebook which you can easily get from them. However, one in more than one hundred people get Deep Vein Thrombosis (DVT) after Paley did the surgery (before COVID). Paley didn't release data for DVT during COVID but it says that it's higher in the following statement.
"DVT can occur after any orthopedic surgery or after
any fracture. Fortunately, we have a very low rate of
this complication (1%). For unexplained reasons we
found that the risk of DVT rose in 2020 compared
to prior to 2020. The only difference from prior
years was COVID19. While all the patients tested
negative before surgery to COVID19, we do know
that COVID19 does increase the risk of coagulation
related problems . Prevention is key. We use Xarelto
as an outpatient until the end of the consolidation
phase when the patient stops using crutches and
resumes full weight bearing. While we have seen
very few cases of DVT, none resulted in pulmonary
embolism (PE). PE occurs if the clot dislodges and
wanders to the lungs. It can cause shortness of
breath, chest pain, and even death. This is why
we are careful to protect against this. Taking oral
contraceptives and smoking increases the risk of
DVT." (Page 25, Paley STATURE LENGTHENING GUIDE BOOK)
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"Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?"
Yes, I met one man who is great pain of 6-9 level, and he took oxy. But he didn't pass out like I did twice after surgery. So everyone has good luck and bad luck. Personally, I like the passing out experience more than the pain or oxy risk.
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"Are other CLL around you (if you had a chance to talk with them) having/had same experience as you pain wise ?"
Yes, I met one man who is great pain of 6-9 level, and he took oxy. But he didn't pass out like I did twice after surgery. So everyone has good luck and bad luck. Personally, I like the passing out experience more than the pain or oxy risk.
Seems for real based on luck...we will never know till we go trough ig , glad you had a good experience
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Yeah, luck is probably 20%. My passing out experiences are not necessarily good because some people including me didn’t want that near-death experience at least during those breathless moments.
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Yeah, luck is probably 20%. My passing out experiences are not necessarily good because some people including me didn’t want that near-death experience at least during those breathless moments.
Ye ..that might have been tough..
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In my early 30s.
So the probability of PE is 0.00% stated on the Paley guidebook which you can easily get from them. However, one in more than one hundred people get Deep Vein Thrombosis (DVT) after Paley did the surgery (before COVID). Paley didn't release data for DVT during COVID but it says that it's higher in the following statement.
"DVT can occur after any orthopedic surgery or after
any fracture. Fortunately, we have a very low rate of
this complication (1%). For unexplained reasons we
found that the risk of DVT rose in 2020 compared
to prior to 2020. The only difference from prior
years was COVID19. While all the patients tested
negative before surgery to COVID19, we do know
that COVID19 does increase the risk of coagulation
related problems . Prevention is key. We use Xarelto
as an outpatient until the end of the consolidation
phase when the patient stops using crutches and
resumes full weight bearing. While we have seen
very few cases of DVT, none resulted in pulmonary
embolism (PE). PE occurs if the clot dislodges and
wanders to the lungs. It can cause shortness of
breath, chest pain, and even death. This is why
we are careful to protect against this. Taking oral
contraceptives and smoking increases the risk of
DVT." (Page 25, Paley STATURE LENGTHENING GUIDE BOOK)
Thank you for the reply. Is this guidebook given only to patients? Is it something that is not allowed to be distributed to outsiders?
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Everyone can get it. Just email the Paley Institute, bro.
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Day 8: Pain level increase in the nighttime. However, everything else is getting better. As of 7:08pm of today, I went to PT, lengthened 0.75 mm for the first time, and even managed to take a real shower by myself. Now, I'm officially independent of a caregiver because I was able to go to the toilet and take shower all by myself. (All other real needs can be satisfied by Uber Eat and Target grocery delivery). This is such a wonderful blessing. All I need to focus on now is to minimize the pain level during night sleep so I can have a good body for PT and a good brain for some cognitive tasks without taking painkillers that have bad side effects/risks. I might consider taking melatonin if it's not too risky for my morning cognitive function (I scheduled all my PT in the afternoons so I can get some laptop work done in the morning when my brain functions the best).
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It’s nice to see you are already independent! I probably will never meet you because all my PT sessions are in the morning lol
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It’s nice to see you are already independent! I probably will never meet you because all my PT sessions are in the morning lol
Why do you schedule all PT in the morning? Do you have to work in the afternoon or what?
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Why do you schedule all PT in the morning? Do you have to work in the afternoon or what?
I’m taking 3 month off to be as relaxed as possible. I feel going to PT is like a daily mission… I’d like to complete it in the morning so I can be free the rest of the day.
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Day 9: Pain~~~but still not enough for me to take the risk of extra tylenol (hopefully I only need 2 Tylenol during the night). Certainly won't take oxy for now (hopefully never). But yeah, it's painful...Good thing is that I managed to take shower again today by myself. So yesterday's first shower is not just a dream, but a real thing I can probably do every day unless something terrible happens to disable my shower ability.
Other things I feel grateful about today:
1. Grew 1.75mm so far
2. Made some new friends who have done CLL
3. Got some cocoa butter formula for bruise dry skin. Hopefully, I won't wake up tonight because of the dry skin of the bruise.
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Everyone can get it. Just email the Paley Institute, bro.
I managed to get it, but it doesn't have that latest update on covid. Maybe I got an old one.
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Day 13 Everything seems normal. Just lengthen and stretch every day. Gained 6.5mm so far. The two biggest concerns, for now, seem to be nail bending and embolism.
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Just a heads-up...there's not martyrdom in not taking painkillers and suffering. Having 2 broken femurs is EXACTLY what pain meds are for. It's not a contest to see "who takes them the least." Don't put yourself through unnecessary pain. Best of luck and keep on truckin'.
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Day 21: Today is the 3-week mark since surgery. Things are going well. Still painful but thankfully things are getting easier overall. Had my first night without Tylenol last night, and the sleep was a good-7-hour one. Hopefully, I get to have another 7-hour sleep without any medication tonight. By the way, I still have a full bottle of oxy, and I haven't taken a single oxy pill yet since surgery day because I try to minimize the risk of oxy and save it only for an extremely-super-extraordinary painful situation. So lots of things to be thankful for.
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Wow!
The fact that you avoided oxy this far its incredibile !
Thanks for updating us .
Best wishes for the future weeks
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What's your starting height OP?
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My starting height is about 5'7''
Day 24: Things are getting a little concerning due to the chest pain and the possibility of embolism, which is probably the only lethal risk of the surgery. My chest pain started around last Tuesday around level 3 with occasional shortness of breath. This week, I don't have any shortness of breath, and the chest pain level has decreased to level 1 (if I'm taking a deep breath). The fact that I can still feel a little chest pain when I'm taking a deep breath is concerning because that's a classic symptom of embolism.
I did an ultrasound test today on my legs, which don't have any blood clots because I've been taking 10mg of xarelto every day since surgery. Hopefully, I won't feel any chest pain even if I'm taking a very deep breath.
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How are you today? Hope you are feeling better. Did the chest pain go over? Did the clinic react quickly when you informed them about this?
Sending you all my good thoughts 😊
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Probably feeling better today. The clinic reacted well and quickly.
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Day 32: I was told today by a friend who did arm lengthening surgery a month ago but had to do an emergency corrective surgery this week due to loosening of the pins, which is dangerous to nerve.....this event is concerning because I'm not familiar with this type of risk. Now I feel like I need to be extra careful to not make sudden leg movements not only to prevent nail bending but also pin loosening....
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Hope you are doing well!
Any updates? :)
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Hope you are doing well!
Any updates? :)
Grew a little more than an inch so far but feeling painful everyday, especially when I’m sleeping…but we all know that pain is just part of the deal…
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Good to hear that you are growing! :)
Did the chest pain go away, did you get to figure out why you had it?
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Good to hear that you are growing! :)
Did the chest pain go away, did you get to figure out why you had it?
I think the chest pain went away. It's probably a body reaction to stress. Lots of stress comes from the inability to work on cognitive tasks due to pain in the legs. This inability to work means the potential loss of big income, which causes stress. To reduce the stress, I realized that I need to lower my expectation and adjust my monthly goals for cognitive work that I probably won't be able to do more than 30 minutes of cognitive tasks per day. It's not ideal, but it's OK because life isn't always perfect.
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have been feeling numbness on my right leg (between knee and foot) for a total period about 5 hours since today morning. So I slowed down the lengthening speed from 1 mm per day to 0.75 mm. Is there any other action I can take to prevent possible damage?
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Numbness on lower legs is very common and not a big concern. You can ask PT to teach you to do some nerve glides to stretch irritated nerves, but it won’t be as helpful as slowing down lengthening. Once your lower legs start to feel numb, it’s possible that nerve pain will be coming next. Nerve pain is different from other types of pain, it’s usually unbearable without taking pain meds like gabapentin. I’ve seen several people who couldn’t stretch and became tight quickly because of nerve pain. If you’re concerned about taking gabapentin (once you start to take it, you have to be on it until finishing lengthening), slowing down would be the best option and should help.
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Numbness on lower legs is very common and not a big concern. You can ask PT to teach you to do some nerve glides to stretch irritated nerves, but it won’t be as helpful as slowing down lengthening. Once your lower legs start to feel numb, it’s possible that nerve pain will be coming next. Nerve pain is different from other types of pain, it’s usually unbearable without taking pain meds like gabapentin. I’ve seen several people who couldn’t stretch and became tight quickly because of nerve pain. If you’re concerned about taking gabapentin (once you start to take it, you have to be on it until finishing lengthening), slowing down would be the best option and should help.
Great info! I appreciate it! You mentioned about gabapentin. Do you think that has more side effect than oxy? If not, how’s gabapentin compared to Tylenol?
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Great info! I appreciate it! You mentioned about gabapentin. Do you think that has more side effect than oxy? If not, how’s gabapentin compared to Tylenol?
Both gabapentin and tylenol can be used long term. I think they’re both safe. Oxy is only safe in short term. I would not worried about gabapentin if you have to take it one day. And since you only experienced numbness for 5 hours, I think slowing down should prevent numbness in future. It’s important to let doctor know if you want to slow down. I’m not sure how fast your bones are healing, but in my case I can’t slow down because my bones are growing fast. If I have nerve pain I have to be on gabapentin. (I was on gabapentin for 2 months last year)
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Both gabapentin and tylenol can be used long term. I think they’re both safe. Oxy is only safe in short term. I would not worried about gabapentin if you have to take it one day. And since you only experienced numbness for 5 hours, I think slowing down should prevent numbness in future. It’s important to let doctor know if you want to slow down. I’m not sure how fast your bones are healing, but in my case I can’t slow down because my bones are growing fast. If I have nerve pain I have to be on gabapentin. (I was on gabapentin for 2 months last year)
Thank you for letting me know. I have been crazy researching about numbness on the forum for the past 24 hours, and I found that Dr. Assayag is super concerned about numbness based on his scary comment in the following post:
"Numbness should be IMMEDIATELY assessed by the surgeon. The first step is to SLOW DOWN lengthening. Nerve territory should be identified and appropriate nerve release should be done (if possible) . Before more damage is done. It is an URGENCY -Dr. Michael J Assayag MD FRCSC, Limb Lengthening and Reconstruction Surgeon"
http://www.limblengtheningforum.com/index.php?topic=65627.0
However, Dr. Paley's Guidebook says that the key danger/symptom to look for is NOT numbness BUT "weakness or paralysis of muscles" on Page 26. After I read about Dr. Paley's guidebook again, I think it's inappropriate for Dr. Assayag to scare readers by mentioning "nerve release" (surgery) when the post is about numbness, not a weakness of muscles. The "never release" (AKA nerve decompression surgery) is certainly URGENTLY needed to prevent permanent foot drop ONLY if there is a "weakness of muscles" not due to numbness based on the Paley Guidebook.
Now, if the symptom is only numbness but NOT a weakness of muscles, then there is no need to slow down the lengthening speed, right?
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Thank you for letting me know. I have been crazy researching about numbness on the forum for the past 24 hours, and I found that Dr. Assayag is super concerned about numbness based on his scary comment in the following post:
"Numbness should be IMMEDIATELY assessed by the surgeon. The first step is to SLOW DOWN lengthening. Nerve territory should be identified and appropriate nerve release should be done (if possible) . Before more damage is done. It is an URGENCY -Dr. Michael J Assayag MD FRCSC, Limb Lengthening and Reconstruction Surgeon"
http://www.limblengtheningforum.com/index.php?topic=65627.0
However, Dr. Paley's Guidebook says that the key danger/symptom to look for is NOT numbness BUT "weakness or paralysis of muscles" on Page 26. After I read about Dr. Paley's guidebook again, I think it's inappropriate for Dr. Assayag to scare readers by mentioning "nerve release" (surgery) when the post is about numbness, not a weakness of muscles. The "never release" (AKA nerve decompression surgery) is certainly URGENTLY needed to prevent permanent foot drop ONLY if there is a "weakness of muscles" not due to numbness based on the Paley Guidebook.
Now, if the symptom is only numbness but NOT a weakness of muscles, then there is no need to slow down the lengthening speed, right?
Why would u not tho ?
It does not matter if Assayag is wrong, giving ur soft tissues less trauma is always gonna be beneficial .
If I was you , I would slow down to 0.75 mm a day for few days at least.
Its not a sprint but a marathon therefore 0.50 or 0.75 mm of gains lost in a matter of a 2 or 3 days time frame , might be way more beneficial in the long run then to keep doing 1mm a day for a faster lenghtening process but a worst rehab in the long term .
You are doing this once in a lifetime ,some more days won't be brutal so please slow down if your bone regeneration its not very fast to fear pre consolidation.
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Why would u not tho ?
It does not matter if Assayag is wrong, giving ur soft tissues less trauma is always gonna be beneficial .
If I was you , I would slow down to 0.75 mm a day for few days at least.
Its not a sprint but a marathon therefore 0.50 or 0.75 mm of gains lost in a matter of a 2 or 3 days time frame , might be way more beneficial in the long run then to keep doing 1mm a day for a faster lenghtening process but a worst rehab in the long term .
You are doing this once in a lifetime ,some more days won't be brutal so please slow down if your bone regeneration its not very fast to fear pre consolidation.
Well, the numbness frequency and period are decreased today. Also, Dr. Paley’s guidebook mentioned the real danger of nerve injury happens only if the weakness of muscles happen. So I don’t see the point of delaying the lengthening again today. Delaying the lengthening feels like stuck in a traffic jam and not going to places….
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Well, the numbness frequency and period are decreased today. Also, Dr. Paley’s guidebook mentioned the real danger of nerve injury happens only if the weakness of muscles happen. So I don’t see the point of delaying the lengthening again today. Delaying the lengthening feels like stuck in a traffic jam and not going to places….
Ya I was told numbness is ok and not a big concern. Weakness of muscles is serious. If I only feel numbness and nerve pain, I would just keep doing 1mm per day and start to take gabapentin. However you mentioned you feel painful every day, so slowing down should also reduce the pain and make life easier. I understand why you don’t want to slow down though.
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Well, the numbness frequency and period are decreased today. Also, Dr. Paley’s guidebook mentioned the real danger of nerve injury happens only if the weakness of muscles happen. So I don’t see the point of delaying the lengthening again today. Delaying the lengthening feels like stuck in a traffic jam and not going to places….
Numbness is normal. It will go away a few weeks into consolidation period as your nerves begin to catch up.
Nerve pain is a very different subject. If you feel significant nerve pain, such as a thunder-like striking pain, it may be better to slow down. Consult with Robbins.
Numbness could eventually lead to nerve pain, but not always.
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Day 42 Life is certainly not easy during the lengthening stage. However, I realized that this life is so much better than the survivor life at the Auschwitz concentration camp. Yes, there're pain, numbness, and even fear of death for lengthening your legs. However, there're also so many things to be thankful for after I looked at the struggle and the constant anxiety of being killed in the gas chambers of the Auschwitz concentration camp. This lengthening journey is truly one of the most impactful experiences I ever had in life. The experience has forced me to reflect on life in a way that I had never done before. What doesn't kill you can truly make you strong.
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Day 44 Still feeling numbness on the outside of the lower right leg. Both PT and Dr. Claire Shannon (Dr. Paley's partner) said that there is no need to slow down from 1mm per day to 0.75mm for now, and I'll probably have this numbness until I stop lengthening. However, Dr. Assayag on the forum said that "continuing lengthening at the same speed without addressing the symptoms [numbness] is, in my opinion, not a safe way to proceed." So this is one of those confusing situations because the Paley team seems to be ok with not slowing down. But Dr. Assayag's "opinion" is to slow down.
So what's your opinion on this decision? 1mm per day or slowing down to 0.75mm?
(I personally like 1mm because I don't want to delay the lengthening period. Plus, the numbness doesn't feel very severe).
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Day 44 Still feeling numbness on the outside of the lower right leg. Both PT and Dr. Claire Shannon (Dr. Paley's partner) said that there is no need to slow down from 1mm per day to 0.75mm for now, and I'll probably have this numbness until I stop lengthening. However, Dr. Assayag on the forum said that "continuing lengthening at the same speed without addressing the symptoms [numbness] is, in my opinion, not a safe way to proceed." So this is one of those confusing situations because the Paley team seems to be ok with not slowing down. But Dr. Assayag's "opinion" is to slow down.
So what's your opinion on this decision? 1mm per day or slowing down to 0.75mm?
(I personally like 1mm because I don't want to delay the lengthening period. Plus, the numbness doesn't feel very severe).
I would slow down ,you can't go wrong .
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Day 44 Still feeling numbness on the outside of the lower right leg. Both PT and Dr. Claire Shannon (Dr. Paley's partner) said that there is no need to slow down from 1mm per day to 0.75mm for now, and I'll probably have this numbness until I stop lengthening. However, Dr. Assayag on the forum said that "continuing lengthening at the same speed without addressing the symptoms [numbness] is, in my opinion, not a safe way to proceed." So this is one of those confusing situations because the Paley team seems to be ok with not slowing down. But Dr. Assayag's "opinion" is to slow down.
So what's your opinion on this decision? 1mm per day or slowing down to 0.75mm?
(I personally like 1mm because I don't want to delay the lengthening period. Plus, the numbness doesn't feel very severe).
Interesting. Dr Robbins suggested slowing down when I first felt the numbness last year. I copied this from my diary: “I mentioned the numbness to the doctor. Today I also started to feel pins and needles in my left lower leg when I kept left leg straight. The doctor sent me gabapentin and suggested slow down the lengthening. He said I could keep 1 mm a day, but he had one patient who still had numbness in his lower leg two years after lengthening.”
I didn’t slow down because I was worried about pre consolidation and I was only at 3.1 cm at that time. I didn’t want the whole process to be longer. It would be best to slow down though.
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Interesting. Dr Robbins suggested slowing down when I first felt the numbness last year. I copied this from my diary: “I mentioned the numbness to the doctor. Today I also started to feel pins and needles in my left lower leg when I kept left leg straight. The doctor sent me gabapentin and suggested slow down the lengthening. He said I could keep 1 mm a day, but he had one patient who still had numbness in his lower leg two years after lengthening.”
I didn’t slow down because I was worried about pre consolidation and I was only at 3.1 cm at that time. I didn’t want the whole process to be longer. It would be best to slow down though.
That’s a little bit strange the two partners of Dr. Paley suggest different actions. Maybe I need to email Dr.Paley himself to decide if I should slow down or not. Do you think that numbness after two years is exactly caused by his action of not slowing down? I certainly don’t want the numbness for two years but my symptom is only some numbness and nothing else. You said that you felt “pins and needles.” Does that mean pain? Is that “pins and needles” the reason Dr. Robbins suggested to slow down? Or he made that suggestion solely based on a single symptom of numbness? Also, how bad was your numbness while Dr. Robbins decided to slow down? My current numbness is not too bad because I feel it’s mild numbness.
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I don’t have answers… I would not slow down if I were you, but it’s always safer to lengthen slowly but fast enough to avoid pre consolidation even if you don’t have any problems.
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I don’t have answers… I would not slow down if I were you, but it’s always safer to lengthen slowly but fast enough to avoid pre consolidation even if you don’t have any problems.
I just private messaged Dr. Assayag, and he said that he would let patient not only slow down but also pause the lengthening entirely for one day as well as shorten the legs for 1mm or 2mm. My question for you is that did Dr. Robbins ask you to slow down to 0.75mm or 0.5mm per day? Or did he tell you to slow down to 0.75mm every other day? What exactly was the suggestion he told you? Did Robbins tell you to pause for one day entirely or reverse by 1mm?
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I just private messaged Dr. Assayag, and he said that he would let patient not only slow down but also pause the lengthening entirely for one day as well as shorten the legs for 1mm or 2mm. My question for you is that did Dr. Robbins ask you to slow down to 0.75mm or 0.5mm per day? Or did he tell you to slow down to 0.75mm every other day? What exactly was the suggestion he told you? Did Robbins tell you to pause for one day entirely or reverse by 1mm?
Dr Robbins only suggested slowing down to 0.75 mm a day (not pause or reverse). It’s just a suggestion. He allowed me to keep doing 4 turns but warned me about long term numbness. I’m not saying Dr Assayag is wrong, but I would listen to my own doctor. I don’t really trust Dr Shannon because she’s not working with CLL patients normally and Dr Robbins is much more professional on CLL cases. I don’t know if Dr Robbins would suggest slowing down, but I’m sure he would allow you to keep doing 4 turns. I mean you can’t go wrong with slowing down, but I think there’s no big risk with keeping 4 turns either.
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Dr Robbins only suggested slowing down to 0.75 mm a day (not pause or reverse). It’s just a suggestion. He allowed me to keep doing 4 turns but warned me about long term numbness. I’m not saying Dr Assayag is wrong, but I would listen to my own doctor. I don’t really trust Dr Shannon because she’s not working with CLL patients normally and Dr Robbins is much more professional on CLL cases. I don’t know if Dr Robbins would suggest slowing down, but I’m sure he would allow you to keep doing 4 turns. I mean you can’t go wrong with slowing down, but I think there’s no big risk with keeping 4 turns either.
If he suggested 0.75mm, does that mean 0.5mm is even safer? I certainly don’t mind the delay anymore after I read about how dangerous and irreversible is the nerve damage for permanent numbness and permanent pain. It seems that the premature consolidation risk is so much lower than the risk of permanent numbness/pain after I did tons of research. Plus, you can spend money to do a corrective surgery to solve the premature consolidation problem. The real danger of numbness seems to be the fact that none of the corrective surgeries/money can solve the problem. Thus, I’d certainly now more than willing to paying extra fees for longer hotel stays and slow down to 0.5mm or even pause for a day if that means a safer long term result.
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If he suggested 0.75mm, does that mean 0.5mm is even safer? I certainly don’t mind the delay anymore after I read about how dangerous and irreversible is the nerve damage for permanent numbness and permanent pain. It seems that the premature consolidation risk is so much lower than the risk of permanent numbness/pain after I did tons of research. Plus, you can spend money to do a corrective surgery to solve the premature consolidation problem. The real danger of numbness seems to be the fact that none of the corrective surgeries/money can solve the problem. Thus, I’d certainly now more than willing to paying extra fees for longer hotel stays and slow down to 0.5mm or even pause for a day if that means a safer long term result.
Hi,I already told you so and idk why you are so hesitant to slow down the lenghetning .
Lengthening to the slowest rate possible ,under the right bone condition ,its way better for everything, not just nerves .
If it was possible LL would be way more safe with smaller amount of lengthening x day .
Just slow down to 0.75 for several days and see how it goes
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Hi,I already told you so and idk why you are so hesitant to slow down the lenghetning .
Lengthening to the slowest rate possible ,under the right bone condition ,its way better for everything, not just nerves .
If it was possible LL would be way more safe with smaller amount of lengthening x day .
Just slow down to 0.75 for several days and see how it goes
I’m not hesitant to slow down. The question is why not slowing down to 0.5mm or even pausing for a day?
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I’m not hesitant to slow down. The question is why not slowing down to 0.5mm or even pausing for a day?
I'am confused .
So far you have been asking if to slow or not but Paley staff said not so you didn't want to .
Now you want to slow even more ?
My 2 cents since I am not a former patient and you have P2.2 so it's a tool for sure every extra day BUT when it will become my turn I will look for a 1mm lenghetning first 2 weeks and then 0.75mm for the whole rest of the lengthening with occasional 1mm if needed to avoid pre cons .
Since you have been making 1 mm so far for so long , even 0.5 mm would probably work and I am a fan of the less the better when possible .
If you have the will to pause then pause a day and keep with 0.75 after .
If not then yes do 0.5 and then 0.75 and discuss with ur doctor if you can keep that by looking at x Rays.
I was looking at a diary from many years ago from a Baumgart patient with Fitbone and he routinely lengthened 0.75mm not 1mm x day .
Baumgart is a really good and experienced doctor so I believe that 1mm is like the 8 cm length of Precice : its duable and u will be ok but doing less is ALWAYS better .
Slowing down the lenghetning is makes the distraction longer but ur soft tissues will thank you later in life .
This is my opinion and why if I was you I would not stop but slow down from now on for the rest of the lenghetning (based again, on eventually positive x Rays of bones not consolidating too fast ) .
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I'am confused .
So far you have been asking if to slow or not but Paley staff said not so you didn't want to .
Now you want to slow even more ?
My 2 cents since I am not a former patient and you have P2.2 so it's a tool for sure every extra day BUT when it will become my turn I will look for a 1mm lenghetning first 2 weeks and then 0.75mm for the whole rest of the lengthening with occasional 1mm if needed to avoid pre cons .
Since you have been making 1 mm so far for so long , even 0.5 mm would probably work and I am a fan of the less the better when possible .
If you have the will to pause then pause a day and keep with 0.75 after .
If not then yes do 0.5 and then 0.75 and discuss with ur doctor if you can keep that by looking at x Rays.
I was looking at a diary from many years ago from a Baumgart patient with Fitbone and he routinely lengthened 0.75mm not 1mm x day .
Baumgart is a really good and experienced doctor so I believe that 1mm is like the 8 cm length of Precice : its duable and u will be ok but doing less is ALWAYS better .
Slowing down the lenghetning is makes the distraction longer but ur soft tissues will thank you later in life .
This is my opinion and why if I was you I would not stop but slow down from now on for the rest of the lenghetning (based again, on eventually positive x Rays of bones not consolidating too fast ) .
I understand you're confused because the situation is constantly changing like COVID-19. As of 1:53pm today, Dr. Paley himself emailed me to recommend slowing down. In addition, I have been reading lots of info about the grave danger of seemingly innocent numbness since my numbness reached my foot last night. All in all, my opinion for numbness has changed significantly since 24 hours ago because it seems to be the sign for one of the only two irreversible tragedies of the surgery: death and permanent numbness/pain.
Thus, 0.75mm would be the maximum I'll do, and I'm seriously considering 0.5mm or even pausing it completely for at least a day as well to prevent permanent numbness/pain that money cannot help eliminate. That's why I asked the question to see if I should do 0.5 or 0.75.
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Hi taking action! How are you doing? How much have you lenghtened? How are you adapting to the new height?
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Hi taking action! How are you doing? How much have you lenghtened? How are you adapting to the new height?
48.50mm and adapting by frequently adjusting my expectation based on situations. For example, just because yesterday was pain-free, doesn't mean today would repeat that because every day can give you bad luck of pain. Frequently adjusting expectations is the key for adaptation for mental survival.
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any update?
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any update?
Nothing new besides some "normal" things like knee pain and numbness but nothing significantly affects my sleep/cognitive function too much, yet. Currently at 56mm, which is already taller than the height gain of some people who ended at 50mm or 55mm.
Also, I've been going to the swimming pool to walk & exercise every other day for months even when the temperature is cold like 61 f or 16 c degrees.
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Awesome, dude! Keep up the good attitude. You're soon out at the other side.
You must be at 2 inches now? How is the new height feeling?
I think 8 cm in femurs will look great on just about anybody. Long femurs are very attractive.
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Awesome, dude! Keep up the good attitude. You're soon out at the other side.
You must be at 2 inches now? How is the new height feeling?
I think 8 cm in femurs will look great on just about anybody. Long femurs are very attractive.
Yeah, more than 2 inches. The new height has given me a sense of bone-deep confidence, literally.
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Hi TakingAction.
First of all, great progress on the 2in. I wish you best luck and can do more or whatever your goal is, safely :)
I also just did tibia & it's 6 days post my OP now. I have a question: few days ago I started to have an annoying symptom: my left leg is fine but the right one has a weird annoying pain. A tiny twist of my foot would radiate a sharp lev-8 pain to my tibia bone (I think) where the breakage is. So it's annoyingly sensitive if someone/something collides with my ankle or foot front even just softly.
Did you experience anything similar?
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Hi TakingAction.
First of all, great progress on the 2in. I wish you best luck and can do more or whatever your goal is, safely :)
I also just did tibia & it's 6 days post my OP now. I have a question: few days ago I started to have an annoying symptom: my left leg is fine but the right one has a weird annoying pain. A tiny twist of my foot would radiate a sharp lev-8 pain to my tibia bone (I think) where the breakage is. So it's annoyingly sensitive if someone/something collides with my ankle or foot front even just softly.
Did you experience anything similar?
To answer your question, probably yes. The first 1.5 months is the most painful period that everyone gets 839 kinds of pains.
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Yeah, more than 2 inches. The new height has given me a sense of bone-deep confidence, literally.
Damn, man. Sounds great. Can't wait to do the surgery at Paley myself in 1-2 years. Currently saving up. Going excellent.
What are your current thoughts on your lengthening situation? Are you gonna max out the nails?
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Damn, man. Sounds great. Can't wait to do the surgery at Paley myself in 1-2 years. Currently saving up. Going excellent.
What are your current thoughts on your lengthening situation? Are you gonna max out the nails?
Everyday there can be surprises. Certainly not going to max out. Maybe 70, 75, 77, or 79.75. Haven’t decided which one yet.
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Everyday there can be surprises. Certainly not going to max out. Maybe 70, 75, 77, or 79.75. Haven’t decided which one yet.
79 mm is the max. They added 1 mm during the surgery to prevent consolidation.
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Day 86: I have gained 71.5mm, which is more than I need. I plan to finish the distraction phase in about a week then leave Florida.
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How's your flexibility?
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How's your flexibility?
Pretty good
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TakingAction, so, did you experienced nerve pain or took gabapentin at all during your femur journey?
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Hi TakingAction! How was your flexibility pre-lengthening? Were your hamstrings really flexible? Has any muscle been more of a challenge during lengthening?
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Sorry.I’m going to answer your question soon.
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Hi TakingAction! How was your flexibility pre-lengthening? Were your hamstrings really flexible? Has any muscle been more of a challenge during lengthening?
They’re all pretty flexible. Not very challenging during lengthening.
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TakingAction, so, did you experienced nerve pain or took gabapentin at all during your femur journey?
Yes I had some nerve pain but i didn’t take any pain medicine for that nerve pain because the pain is not too bad.
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Hey all, I’m going to write the final update of my limb lengthening journey so everyone knows the end result of my experience after I had the surgery more than one year ago. The short summary: everything is not too bad. Now let me tell you the long story. Some patients only write journal of their experiences for half year or 1 year then they just disappeared because there is no big change. This disappearance without giving a final update after their nail removal can cause some concern for some readers because some readers thought those patients had problem or something. I’m now going to be one of the patients who tell you the story of my real ending result after I had the surgery More than 1 year ago as well as after I finished the nail removal process (the final chapter of the limb lengthening journey) more than 3 months ago. My nail removal date: October 26, 2022. I was told by medical doctor that I’m in the safe zone for all activities. I can walk, run, jump, lift weight, and do everything normally just like I do before I had the surgery more than one year ago. The only bad or slightly embarrassing thing might be the surgery scars on my legs, which are noticed by one of the girls I have been seeing. I have been working on the scar reduction/removal at a beauty clinic with fractional laser which has reduced the appearance of scars. Thankfully, I do Not have any bad symptom that affects my life. My life feels normal. But this healthy condition does not 100% mean that I won’t have any symptom in 30 years or in 20 years or earlier. My current healthy condition means that I’ll have a lower probability of having symptoms in the future. I probably won’t have any bad symptom in the future because most symptoms such as nerve damage appear within the first year of the limb lengthening surgery. I have never had any fracture / nail breakage since the start of limb lengthening journey. Now let me tell you how my life has changed positively since the surgery. I feel that I have a higher value than most men because my height is objectively higher than those of most men. It’s literally a bone-deep confidence that has helped me in all kinds of social life including but not limited to dating, business, and even some friendship. I wish I can quantify the improvement but it’s hard to give an improvement percentage. If moving from a small city of 200,000 people to a major cities like New York City can improve your dating life by 40%, this limb lengthening surgery can potentially improve your dating life by around 50%-70%. It’s not magic that makes you as attractive as celebrity, but the taller height has helped my dating life and other social life. I’m thankful for these life improvements. Knowing all the info I know so far, I’d do the surgery again if time machine let me go back to more than one year ago when I was deciding the surgery. I have been so busy with my life that I don’t have much time on responding message on the website. Sorry. I probably won’t answer any new question anymore unless you send me some really really good/important question to my inbox.
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Thank you very much, that is really , really helpful!
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If you have recent imaging data please put it at this thread. Redact any information that could be used to dox you.