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[readyprecisestryde]

Hello, I stopped using oxycodone after week 3 and was not using much of it either. I switched to Tylenol 500 mg once or twice daily. I had more than usual bone growth and the doctor allowed me to take Ibuprofen. I never took tramadol and can’t make any comment since I have taken both tramadol and Gabapentin together. At the same time, I took one 300 mg Gabapentin every 8 hours and it took the nerve pain down drastically. The side effects I got from Gabapentin were a bit of memory loss, drowsiness, and dropped my libido. 

[readyprecisestryde]

Sorry typo...I  can’t make any comment since I have not taken both tramadol and Gabapentin together.

[Hagane]

Hello, I stopped using oxycodone after week 3 and was not using much of it either. I switched to Tylenol 500 mg once or twice daily. I had more than usual bone growth and the doctor allowed me to take Ibuprofen. I never took tramadol and can’t make any comment since I have taken both tramadol and Gabapentin together. At the same time, I took one 300 mg Gabapentin every 8 hours and it took the nerve pain down drastically. The side effects I got from Gabapentin were a bit of memory loss, drowsiness, and dropped my libido.

who was your surgeon readypercisestryde?

[readyprecisestryde]

Paley Institute...... Dr. Paley did one leg and Dr. Robbins did the other leg. They work together in the surgery room

[Hagane]

Paley Institute...... Dr. Paley did one leg and Dr. Robbins did the other leg. They work together in the surgery room

do you have a good leg and a  bad leg haha?

[StrydeNailChallenge]

Hello, I stopped using oxycodone after week 3 and was not using much of it either. I switched to Tylenol 500 mg once or twice daily. I had more than usual bone growth and the doctor allowed me to take Ibuprofen. I never took tramadol and can’t make any comment since I have taken both tramadol and Gabapentin together. At the same time, I took one 300 mg Gabapentin every 8 hours and it took the nerve pain down drastically. The side effects I got from Gabapentin were a bit of memory loss, drowsiness, and dropped my libido.

Thanks for the info.
Did you ever take Tylenol or Ibuprofen on the same that you were also taking Gabapentin?

[readyprecisestryde]

I did take ibuprofen or Tylenol at the same time with Gabapentin. It made me more drowsy and no other side effects taking them together. I got much less drowsy when I took Gabapentin with a meal and a glass of water. The most amount of ibuprofen I took was 400 mg once or twice daily. Ibuprofen worked good for pain and inflammation. Hope this helps  😃

[StrydeNailChallenge]

I did take ibuprofen or Tylenol at the same time with Gabapentin. It made me more drowsy and no other side effects taking them together. I got much less drowsy when I took Gabapentin with a meal and a glass of water. The most amount of ibuprofen I took was 400 mg once or twice daily. Ibuprofen worked good for pain and inflammation. Hope this helps  😃

I took a 300 mg Gabapentin this morning at 9am for the first time and at 9am for a second time. In between I took a 50 mg Tramadol around 6pm. I hope I would need a maximum of two 50 mg Tramadol pills in addition to the two Gabapentin that Dr. M. prescribed, during the 4-distraction-session days.

[readyprecisestryde]

Please also avoid any stretches that triggers nerve pain. For me it was the hamstring stretches that triggered my nerve pain. Prone knee bend and Thomas stretch did not cause me any nerve pain. I still did hamstring stretch but I was very careful with it and I had to keep my hamstrings bent a bit while doing it. I was taking 300 mg Gabapentin at the beginning and it was not working. The doctor increased my dosage to 900mg a day. I remember my nerve pain was keeping me up at nights until Gabapentin started working. Also the doctor told me nerve pain is not dangerous and will go away after I stop lengthening so no need to worry about it.

[readyprecisestryde]

I think the only time nerve pain becomes dangerous if it on the foot constantly and losing function of it. I remember the physical therapist use to test function of my feet and to make sure I haven’t lost any of it

[Body Builder]

Hi my friend.

Why you just don't stop lengthening for one day to let your feet rest a little?
After 3-4 cm premature consolidation is almost impossible.
I think you should pause for a day and talk to your doctor to start lengthen at a slower rate. I think that you lengthen 1mm per day, am I right?
This could be too much for many LLers, esoecially after 3-4 cm. I would stick to 0,66 for the rest of your journey.
At my tibias, I lengthened at 0,66 as an average and had almost really no pain at all. Of course internals and externals as femurs and tibias are not the same in terms of pain but still I truly believe that a slower lengthening will alleviate some of your pain.
Speak to your doctor, who is a very respectable one, about all these and let us know.

Keep strong.

[Hagane]

I think the only time nerve pain becomes dangerous if it on the foot constantly and losing function of it. I remember the physical therapist use to test function of my feet and to make sure I haven’t lost any of it

to my knowledge tingles and nerve pain are a sign of impending nerve damage. which is typically mitigated by reducing the rate of distraction. no one develops a foot drop out of no where ( thats caused from distraction)

[StrydeNailChallenge]

Hi my friend.

Why you just don't stop lengthening for one day to let your feet rest a little?
After 3-4 cm premature consolidation is almost impossible.
I think you should pause for a day and talk to your doctor to start lengthen at a slower rate. I think that you lengthen 1mm per day, am I right?
This could be too much for many LLers, esoecially after 3-4 cm. I would stick to 0,66 for the rest of your journey.
At my tibias, I lengthened at 0,66 as an average and had almost really no pain at all. Of course internals and externals as femurs and tibias are not the same in terms of pain but still I truly believe that a slower lengthening will alleviate some of your pain.
Speak to your doctor, who is a very respectable one, about all these and let us know.

Keep strong.

Hi Body Builder!   
Thanks for your message and all the information you provided. All I have done especially the distraction plan (1.33 mm per day for now) are prescribed by Dr. M.  The reasons for the plan are already noted in my diary (in short, my case is exceptional in terms of growth, flexibility, etc., therefore Dr. M. had to take an exceptional approach). 

[StrydeNailChallenge]

Day 52 (Sat., Sep. 12) - 46.3 mm Taller
Day 53 (Sun., Sep. 13) - 47.6 mm Taller

On day 53, I am on the 6th day of 4 distraction sessions (i.e., 1.33 mm per day) and overall on the 11th day (cause I did 5 days at start too). 8 more days to go

I figured, if things are crazy about my case (extreme growth and flexibility) which made the doctor to advise 1.33 per day sessions to avoid the pre-mature consolidation, I should also make my stretches crazy. I did that and I think it's going to work much better. I have about 8 stretching sessions, and I do more on each sessions (as compared to the normal 1mm distraction days.

Update on Gabapentin
As expected no major impact in terms of pain reduction, but it definitely makes me feel drowsy. My night sleeps as usual are good, but I woke up fewer number of times (every 4 hours or so) last night. It could be a result of taking Gabapentin.


Pain Level
It's 0-1 on right and 1-5 on my left leg. However the discomfort of feeling drowsy caused by taking Gabapentin, makes it harder to tolerate fairly severe pain episodes at level 5.

[BelowTheMean]

I agree that if your bone is growing super fast and you have to lengthen faster than normal then you should do extra stretches!

[StrydeNailChallenge]

I agree that if your bone is growing super fast and you have to lengthen faster than normal then you should do extra stretches!

Hey BelowTheMean,
Hope you are doing well. I will provide an update here, whether extra stretches are effective over a span of several days. So far I can't tell, cause at times it seems to work, but there are times I feel more pain than before.

[farfan21]

when did you do your surgury my friend

[ghkid2019]

when did you do your surgury my friend

July 22/23rd sir. It is on his first page of this very detailed and fully time-stamped diary sir. I hope you can appreciate his thoroughness sir he laid everything out and included all the dates good sir. Sir please just scroll down next time good sir. He put so much effort sir into making sure all the details in this diary sir. All needed to be done was scroll down a bit sir and read a single line sir. This is. Very good and detailed diary sir no need for questions like that sir. Thank you sir. Please just scroll down literally a few posts to see his surgery date sir. Forgive me sir. If it was in the middle of the diary where he mentioned the date then it is fair to ask such a question sir. But it is not sir. It is on the first page sir. The very first page mister sir. Planting spike sir. Wall raised. Boom buddy out sir. Sir thank you so much sir. Sorry for fat emboli sir. Hope you recover sir. Healing you.

[StrydeNailChallenge]

when did you do your surgury my friend

Hi farfan21,

I did the surgery on Thursday, July 23.

I wish you the best,
SNC

[StrydeNailChallenge]

Day 54 (Mon., Sep. 14) - 49 mm Taller
Day 55 (Tue., Sep. 15) - 50.3 mm Taller
Day 56 (Wed., Sep. 16) - 51.6 mm Taller
Day 57 (Thurs., Sep. 17) - 52.9 mm Taller

I have continued my 4 distraction per day (i.e., 1.33 mm daily distraction). I am gradually losing my flexibility on my quad (left leg only), and bending knees (both legs). Also straightening legs is a challenge. While walking I feel like my legs are very stiff and at times I feel like keeping my knees straight is difficult.

I emailed Dr. M. by the end of Day 55 and asked him whether I could stop the 4 distraction days, now that I had done 8 days and considering the pain and flexibility loss. He said I should continue for the whole two weeks, as my growth was very extreme and I had grown some strong bones, which means I was in danger of getting premature consolidation.

I have continue to take smaller dozes of Calcium and also limited my walks, hoping my grown slows down a bit.

In 4 days, I'll be done with 4 distractions per day and switch back to 3 distractions per day.

CLL'ers, hope you are doing great. Let me know if you have any questions.

[ghkid2019]

5' 10 babee. Let's goo! Officially above average in America, and probably a decent amount more than avg for LA.

[StrydeNailChallenge]

5' 10 babee. Let's goo! Officially above average in America, and probably a decent amount more than avg for LA.

Thanks ghkid2019

1.33 mm distraction per day at 50+ mm  is tough brother! I wanted to cheat and stop on day 8, but Dr. M. did not allow me   I have 4 more days to go!

I certainly look tall, barefoot and my legs look beautifully tall!    Something funny is that my torso is so large, I remember  I used to sit with some colleagues who are 185+, 190cm tall, and sitting around the table, I felt like my torso was as long as theirs!  This means, if I manage to complete the distraction phase all the way to 8cm, my torso would probably not look short, compared to my thighs. I checked my L shape of torso, thigh and at this point, it may look close to proportional, but torso looks a bit taller. I guess this would be a good thing for me!   

Another funny thing!   a lot of us do femurs only, right?  tibia would remain short. What if that makes knees look like to close too the ground?    Anyways, I guess when I took the stryde nail challenge, I did not care about such stuff and I still don't much.

[Hagane]

keep on fighting SNC! you got this!

at this rate if your consolidation is too good, you may have to take up smoking to slow it down 
i know there aint a whole lot you can do to stop the tightness, ahve you tried sauna? or a hot tub?

[StrydeNailChallenge]

keep on fighting SNC! you got this!

at this rate if your consolidation is too good, you may have to take up smoking to slow it down 
i know there aint a whole lot you can do to stop the tightness, ahve you tried sauna? or a hot tub?

Could you believe, I asked Dr. M. about smoking during my last appt. with him?   He said NO

Did hot showers, hot tub, but not sauna! As long as my left leg is get some hot water either in the shower, or jet, hot tub, etc. I feel good. Almost as if there has been no surgery performed on my left leg. However no matter how long I stay in hot tub, or shower, as soon as I come out, the pain on the left leg starts.

My right leg has been almost completely pain-free; that sometimes scares me, cause I cannot believe my right can handle 1.33 mm daily lengthening with zero pain. It sounds too good to be true! but so far it seems it is growing with the same rate as that of the left leg. It could be that I got really lucky on my right leg and the nails during surgery were done as perfectly as possible.

I am on day 11 of 1.33 mm daily distractions. I have 3.5 days to go. By Monday night I'll be done and can resume 3 distraction (i.e., 0.99 mm per day). I hope starting Tuesday I see improvement in my flexibility and also reduction in pain.

[m7liam]

Wow that’s impressive!!! I’ve been doing 0.75mm per day due to pain. Can’t imagine doing 1.33!

[brondo]

Hey SNC, you're doing great so far! That's pretty crazy how you have almost no pain in your right leg. I do wonder what the difference is between the two legs and why you have a different distribution of pain. Hopefully the pain will subside after you're done with the distraction phase.

-brondo

[StrydeNailChallenge]

Wow that’s impressive!!! I’ve been doing 0.75mm per day due to pain. Can’t imagine doing 1.33!

Hi m7liam,
Good to hear from you Bro,

 I am crazy about winning challenges, getting titles, etc., but doing 1.33 mm lengthening at 4~6cm distraction phase, for two weeks was not something I would ever imagine to go for!

I somehow overdid walking and diet and overgrow!  I am now being punished by nature for that, for two weeks

[StrydeNailChallenge]

Hey SNC, you're doing great so far! That's pretty crazy how you have almost no pain in your right leg. I do wonder what the difference is between the two legs and why you have a different distribution of pain. Hopefully the pain will subside after you're done with the distraction phase.

-brondo

Hi Brondo,
I have mentioned in my diary, in many places about this. This is the short version of it:

Since from day 1, post-op I had almost no pain on right, but severe pain on left, especially while doing PT exercises during the first few days, and later one, pretty much random pain on left, I believe during the surgery, somehow one of the nails must have touched a nerve. Dr. M. is great. It's not about how good your doctor is. I guess it would probably be impossible even for the best Dr. to find the perfect spot and direction for the nails to secure the stryde nail.   

I think it's actually pretty normal that almost every CLL'er and on both legs gets nails touching the nerve system. Therefore they experience pain.

 I think my right leg's operation was just exceptionally performed. The nails were put in the perfect location and on the perfect direction which results in unbelievable "no pain" during 1.33mm distraction days, while I am at 5+cm!

Please let me know if you disagree with my hypothesis and have a better idea how to explain the huge pain difference between my left and right legs.

[brondo]

@SNC, Yeah I agree with your hypothesis. Hopefully in the future they can figure out ways to replicate this process and improve the technology so limb lengthening can be a less painful experience. Good luck with the rest of the distraction phase!

[StrydeNailChallenge]

Day 58 (Fri., Sep. 18) - 54.2 mm Taller

Stretching is certainly the best tool to mitigate the pain. Whenever the pain goes crazy, I repeat the self-PT set of exercises and after doing the first few of them I start to notice pain subsiding.

My left leg calf is so sore and painful, as if I went to a 5 mile mountain hiking twice in two consecutive days. Even hot shower/jet  and pain killers can't do any good for my sore calf. Local pain relief ointments from Costco and Amazon help at least temporarily while applying them and massaging my leg.

If by the coming Monday, which is the end of the 14 days of 1.33mm distraction, prescribed by Dr. M., I feel good enough to continue, I may email Dr. M and see whether I should do a few more 1.33 distraction days just to be more safe; as far as the premature consolidation due to extremely high growth is concerned.

[BelowTheMean]

My left leg calf is so sore and painful, as if I went to a 5 mile mountain hiking twice in two consecutive days. Even hot shower/jet  and pain killers can't do any good for my sore calf. Local pain relief ointments from Costco and Amazon help at least temporarily while applying them and massaging my leg.

I read that as you went on two five mile hikes in the middle of distraction and had to do a double take
Hopefully you are ahead of your bone growth now and don't have to worry as much about premature consolidation.