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[erenyeager1]

I have a pretty thick leg hair as well so not that worried about the scars but still trying to understand if it's worth anything or not. The top scar where they insert the rod isn't a big deal since it's seen only if you're nked but what about the lower one? They're pretty similar for me.

You really don't need to "explain" yourself at all for these trolls asking for pictures/videos. Good chance their posts will be removed as well, if they weren't already. When someone isn't authentic and write a 10 sentences dairy over 3 days it's pretty easy to spot.

Do you feel any difference now from 2-3cm? I'm getting closer to 3cm and started to feel tighter around 2cm.
Btw, why 3 gabapentin? I'm taking one in the morning and one in the evening. And are you taking any other pain meds?

Thanks man! I didn’t realize you are going through this too. Good luck!

If I were you I would buy the scar ointment. It’s not expensive. If it doesn’t work, hey at least you tried. If you didn’t do it and eventually got a pretty visible scar, you may regret not trying it. But that’s not the end of the day still because you can always do laser resurfacing to make the scars lighter. When you take out the rods, they will try their best to do it through the same scars, so they will be open again. You will need to do it again. I am not using any ointment because I don’t usually scar so I am taking an educated bet. A good percentage of patient here, especially women, do use scar ointment.

3 cm is where I begin to feel a little tight. And I got nerve pain in my left lower leg around 3.6 cm. A week after that I started taking gaba. I am doing pretty similar routine as you, just taking one more around noon. I need 3 capsules mostly because I am working long hours and sitting for that long gives me pretty bad nerve pain without gaba. It’s been a lot better since I started gaba. I started with 1 a day. Then around 4.x I was taking 2. Then starting last weekend I begin taking 3. Robbins sort of encouraged me to take more if needed as he said that even 7 a day is normal dosage and 1-2 per day is baby dose. I do feel a little more tired than before when on gaba. Btw 1 gaba here is 300mg.

For pain meds, I am taking Tylenol occasionally. I used to take them regularly but it’s no longer necessary. I saved 23 pills of 10mg oxycodone. I will take them if the pain gets really bad. Remember don’t take 10mg in one go. It will be way too strong. Take 5mg a time. The PA told me that oxy and gaba are fine taking together, but did warn me not to start oxy again in fear of addiction. I am not too worried about that but still I am using it carefully and sparingly.

Honestly, i don’t feel much a difference now compared to when I was at 3.6 cm when the nerve pain first kicked in. I met a few other patients who had the same experience, with some even telling me it got easier towards the end. Of course, a few had a hard time towards the end but they managed to push through and reached max. I expect that I will need to take more gaba soon, but so far so good.

[hippo60]

Honestly, i don’t feel much a difference now compared to when I was at 3.6 cm when the nerve pain first kicked in. I met a few other patients who had the same experience, with some even telling me it got easier towards the end. Of course, a few had a hard time towards the end but they managed to push through and reached max. I expect that I will need to take more gaba soon, but so far so good.

Yeah I got the silicone scar tape so I'm using it but honestly not entirely clear how much it helps.
I have a bunch of oxy left as well, since I stopped taking it on the first week. Hopefully I won't need it but it's nice to have just in case 

Interesting that you don't feel any difference. Are you stretching a lot?
Also how long can you actually sit and work? Are your legs elevated? Personally I'm getting quite uncomfortable sitting in a wheelchair/chair for more than 30m, especially around my knees.

[erenyeager1]

Yeah I got the silicone scar tape so I'm using it but honestly not entirely clear how much it helps.
I have a bunch of oxy left as well, since I stopped taking it on the first week. Hopefully I won't need it but it's nice to have just in case 

Interesting that you don't feel any difference. Are you stretching a lot?
Also how long can you actually sit and work? Are your legs elevated? Personally I'm getting quite uncomfortable sitting in a wheelchair/chair for more than 30m, especially around my knees.

I am stretching 3 times a day, including the daily PT. For the at-home exercise, I am just repeating what I did at PT. I sit for about 2-3 hours at a time, with my legs bent just normal. I tried having my legs elevated by sitting on the wheelchair but it’s difficult to type that way. I can sit for a very very long time on wheelchair with my legs elevated though. Before I start taking 3 gaba a day, I felt the same as you. I start feel numb and have striking pain after 30 minutes in my left lower leg. Surprisingly, I am actually feeling much better now than I did at 4.x cm. Back then I had knee pain on my right side and more nerve pain in my lower left leg.

[hippo60]

I am stretching 3 times a day, including the daily PT. For the at-home exercise, I am just repeating what I did at PT. I sit for about 2-3 hours at a time, with my legs bent just normal. I tried having my legs elevated by sitting on the wheelchair but it’s difficult to type that way. I can sit for a very very long time on wheelchair with my legs elevated though. Before I start taking 3 gaba a day, I felt the same as you. I start feel numb and have striking pain after 30 minutes in my left lower leg. Surprisingly, I am actually feeling much better now than I did at 4.x cm. Back then I had knee pain on my right side and more nerve pain in my lower left leg.

Makes sense! So you're doing about 3 hours a day?
I was told today I can take 3 gabapentin if I need to, but I'm trying to avoid it as long as I'm not in pain.

Curious to see how sitting in a wheelchair is going to change. My doc really doesn't want me sitting around for too long anyhow so maybe it's a blessing in disguise?

Btw, how's your sleep? and did it change throughout the lengthening? I'm waking up every 3 hours due to tightness. Not super fun

[erenyeager1]

Makes sense! So you're doing about 3 hours a day?
I was told today I can take 3 gabapentin if I need to, but I'm trying to avoid it as long as I'm not in pain.

Curious to see how sitting in a wheelchair is going to change. My doc really doesn't want me sitting around for too long anyhow so maybe it's a blessing in disguise?

Btw, how's your sleep? and did it change throughout the lengthening? I'm waking up every 3 hours due to tightness. Not super fun

More like 2 hours a day. The stretch at home are quicker because I just do the most important ones, one for quad, one for hamstring and Thomas. I was told gaba is okay. I knew a few patients who were taking more than 5 a day.

I am not recommending sitting for too long for sure. I have to because I need to work, but otherwise I am not sure that it is the reason that my nerve pain and knee pain got better. My PT did tell me that sitting down for a long time is going to give pressure to the nerve and thus the pain. I would recommend laying flat with your legs straight and press down your knees as often as possible.

I never had issue sleeping throughout, probably because I am not super tight. I knew some patients do have trouble sleeping. One patient who is doing both femurs and tibia told me he could only sleep for 3 hours every night and just be sleepy and can’t sleep for the rest of it.

[hippo60]

More like 2 hours a day. The stretch at home are quicker because I just do the most important ones, one for quad, one for hamstring and Thomas. I was told gaba is okay. I knew a few patients who were taking more than 5 a day.

I am not recommending sitting for too long for sure. I have to because I need to work, but otherwise I am not sure that it is the reason that my nerve pain and knee pain got better. My PT did tell me that sitting down for a long time is going to give pressure to the nerve and thus the pain. I would recommend laying flat with your legs straight and press down your knees as often as possible.

I never had issue sleeping throughout, probably because I am not super tight. I knew some patients do have trouble sleeping. One patient who is doing both femurs and tibia told me he could only sleep for 3 hours every night and just be sleepy and can’t sleep for the rest of it.

You mean your nerve and knee pain got better because you stopped sitting for a long time?
Laying flat is by far the most comfortable. I'm also getting a foam roller to get a better stretch.

I don't think I'm super tight, that's why it's so weird 

[erenyeager1]

I don’t know how my pain got better. My bet would be that I am taking more gaba now versus at 4 cm I was not taking gaba. I inherited a foam roller from another patient and it’s really useful.

[hippo60]

I don’t know how my pain got better. My bet would be that I am taking more gaba now versus at 4 cm I was not taking gaba. I inherited a foam roller from another patient and it’s really useful.

Got it! Do you use the foam roller for both your quads and hamstring?

[erenyeager1]

Got it! Do you use the foam roller for both your quads and hamstring?

I am a little scared to roll on my femur, since PTs never done that to me. I just use it to do lower leg raises. Put it under my knees and do lower leg raises.

[hippo60]

I am a little scared to roll on my femur, since PTs never done that to me. I just use it to do lower leg raises. Put it under my knees and do lower leg raises.

Got it, I was told it's ok so thought you're doing it as well..

[erenyeager1]

Day 70:

I will be 6.3 cm at the end of today. Only 3 weeks away from leaving here, which feels unreal to me. 3 weeks from today I will be back in my apartment in the northeast. I regret bringing my projector and my PlayStation which I hardly used. Anything you can do while lying down is much better because sitting for a long time will bring pain. Yesterday I saw L (one of my caregiver before I become independent) wheeling a new patient into the hotel. He is just like me in early December. I am now the veteran here, since they pause surgery for a while as Paley was traveling everywhere.

To be honest, everything is easier than before. Nerve pain is much less frequent and less intense (thanks to gaba), and that’s the only pain I get. I am taking 5mg of oxy in day time. Everything is going very smoothly.

The only time I saw Paley in the whole process is in the pre-op consultation. I will be seeing Robbins tomorrow and the appointment after that one will be my final one in WPB.

[hippo60]

Sounds amazing, so jealous
Glad everything is better, hopefully it stays that way till you're done.

Btw, you didn't see Paley pre surgery as well?

[erenyeager1]

Thanks man! Same to you. So I saw him on Monday afternoon. My surgery was Tuesday 5 am. I didn’t see if pre-op. I didn’t see Robbins either. The nurses shaved my legs, gave me some stuff through IV, and the anesthesiologist put me to sleep. The last I remember was talking to a nurse when they wheel me out to the operation room. Then I woke up around noon. Robbins checked on me in the afternoon and told me that he did one leg and Paley did the other.

[erenyeager1]

Day 73:

Everything going well. PTs are confident that I can go to 8 cm at this point. Only part that’s very tight is my abductor, and they are not that bad. Robbins don’t care about abductors. He only cares if I can get my knees straight and legs bent over 90 degrees. Also met a patient in person who posted on this thread saying he’s doing surgery on 2/2/2023. New patients are coming in as surgeries are back on schedule.

[hippo60]

That's amazing!! You're almost there
Other than your abductor - you're not really tight at all? Your quads / hamstring are still very flexible?

[erenyeager1]

That's amazing!! You're almost there
Other than your abductor - you're not really tight at all? Your quads / hamstring are still very flexible?

Thanks! I wouldn’t say they are very flexible. They are about the same level of tightness as 5 cm, slighter than when I was at 3 cm. Definitely much tighter compared to pre-surgery but I tried to maintain them at the same level. Abductor is getting tight but Robbins and PAs don’t care about it as much. The two major things they look for is straight knee and knee bent over 90 degrees. If you can’t any one of these two, they may stop you from lengthening for a while.

Also I just hit 70 mm right before typing this. I am on count down for real.

[hippo60]

Thanks! I wouldn’t say they are very flexible. They are about the same level of tightness as 5 cm, slighter than when I was at 3 cm. Definitely much tighter compared to pre-surgery but I tried to maintain them at the same level. Abductor is getting tight but Robbins and PAs don’t care about it as much. The two major things they look for is straight knee and knee bent over 90 degrees. If you can’t any one of these two, they may stop you from lengthening for a while.

Also I just hit 70 mm right before typing this. I am on count down for real.

That's awesome! So close!
What's your rate? 0.75mm a day?

And yeah I think Rozbruch cares pretty much about that as well, based on the tests he's doing each follow up.

[erenyeager1]

That's awesome! So close!
What's your rate? 0.75mm a day?

And yeah I think Rozbruch cares pretty much about that as well, based on the tests he's doing each follow up.

Rate is 1mm a day, divided into 4 turns.

[hippo60]

Rate is 1mm a day, divided into 4 turns.

Wow you stayed on 1mm throughout the entire time? Damn

[seattleperson]

Good job! i wish my process could be as smooth as yours in few months with Dr. Paley

[hashirama]

Thank you for sharing, erenyeager1! I'm glad to hear that you're recovering well from the procedure!

Would you happen to know when you'll be able to walk without the use of a walker? I'm just curious so that I can plan ahead if I'm not able to work from home.

[erenyeager1]

Wow you stayed on 1mm throughout the entire time? Damn

Good job! i wish my process could be as smooth as yours in few months with Dr. Paley

Haha thanks to both!

Thank you for sharing, erenyeager1! I'm glad to hear that you're recovering well from the procedure!

Would you happen to know when you'll be able to walk without the use of a walker? I'm just curious so that I can plan ahead if I'm not able to work from home.

You are welcome! Robbins say 3-4 months but he’s usually conservative. The data points I know are about 2 months, especially when you are only doing femurs.

[r2d2]

Hi thanks for the diary. I will be doing surgery with Paley in April. Which caretaker are you using and what is the rate? Trying to figure this out now as I'll be doing it alone. Thanks

[erenyeager1]

Hi thanks for the diary. I will be doing surgery with Paley in April. Which caretaker are you using and what is the rate? Trying to figure this out now as I'll be doing it alone. Thanks

I used nightingale, one of the two on the list. The experience was okay. I ran into a few that I don’t like, but there are two that I really liked and I stayed with them until my dad came. Honestly, you will be able to be independent by week 4. Rate was 26 an hour for me.

[sixfootandhalf]

Hey, i hope everything is going well!

DId Dr Paley give you a full ITB release from the get go, as you are lengthening femurs?

[erenyeager1]

Hey, i hope everything is going well!

DId Dr Paley give you a full ITB release from the get go, as you are lengthening femurs?

Yes I did get IT band release. It seems everyone gets it.

[erenyeager1]

Also nice to see the forum is back after going offline for a few weeks. I am done lengthening and am back home. At the end, I got about 8 cm. The reason I said “about” was because I didn’t hear the “clicking” sound at the end, even though the machine says I’ve lengthened 8.2 cm (software can go infinite, hard limit is set on the hardware the rods themselves). But the X-ray and height measurement shows I am 182.5 cm so roughly 8 cm taller than what I started with. I am pretty happy and don’t want to change my flight so that’s the end of it. I was very flexible and everything was fine, so maxing out was not a concern, but I was satisfied. I am going to take my one-month X-ray in two weeks. I hope I would be able to walk by then as I heard a few patients had femur healed enough for walking at one month mark.

[sered22]

Congratulations! I'm happy that everything worked out good

How is the pain during consolidation phase?
Looking back at the whole period of lengthening, what part was the most painful in your opinion?

[erenyeager1]

Congratulations! I'm happy that everything worked out good

How is the pain during consolidation phase?
Looking back at the whole period of lengthening, what part was the most painful in your opinion?

Thanks man. I feel no pain from my legs at all right now. No numbness either. I've stopped gaba two weeks ago.

I would say the first two weeks after surgery and the 20 days from 3 to 5 cm were the two periods of most pain but still not too bad. Oxy helps with the first period which is surgical pain. Then the second period was my nerve pain was the most intense. Then they gave me gaba and it died down.

[Werewolf]

what's going on bro ? You will be the same height as Eren yeager awww keep updating

[erenyeager1]

what's going on bro ? You will be the same height as Eren yeager awww keep updating

Haha thanks bro! You got what I meant!