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[TakingAction]

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?

[SuchLL]

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)

[TakingAction]

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?

[Masteryourlife]

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.

[TakingAction]

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….

[SuchLL]

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.

[ryand2021]

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.

[TakingAction]

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.

[TakingAction]

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).

[Masteryourlife]

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 .

[SuchLL]

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.

[TakingAction]

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.

[SuchLL]

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.

[TakingAction]

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?

[SuchLL]

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.

[TakingAction]

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.

[Masteryourlife]

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

[TakingAction]

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?

[Masteryourlife]

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 ) .

[TakingAction]

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.

[height-dream]

Hi taking action! How are you doing? How much have you lenghtened? How are you adapting to the new height?

[TakingAction]

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.

[crippledspiderman]

any update?

[TakingAction]

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.

[Will955]

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.

[TakingAction]

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.

[motoboarder]

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?

[TakingAction]

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.

[Will955]

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?

[TakingAction]

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.

[SuchLL]

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.