Femur Journey with Dr. Paley 11/9/2021

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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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Quote from: TakingAction on December 23, 2021, 10:19:35 PMDay 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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Quote from: TakingAction on December 23, 2021, 10:19:35 PMDay 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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Quote from: SuchLL on December 24, 2021, 02:26:34 PM
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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Quote from: SuchLL on December 25, 2021, 12:20:27 AMI 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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Quote from: TakingAction on December 25, 2021, 05:18:18 PMI 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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Quote from: SuchLL on December 25, 2021, 08:56:37 PMDr 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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Quote from: TakingAction on December 25, 2021, 09:09:55 PMIf 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