Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMUpdate:
It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
My legs, nerves, tissues, and everything from my waist down is extremely tight. I can't stretch my legs more than half way. I can't stand up straight and my duck a** is very bad. I feel a constant pain in my right thigh around 8:00 - 9:00 pm now. This pain doesn't go away until about 8:00 am the next day. I can bend my knees almost all the way on my left leg but not so much on my right leg.
On top of all these, I'm dealing with other personal and business matters. I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed at everything so easy now. I also get pissed off at everyone easily now. I really try to control myself at work.
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your only safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'm seeing Dr. My next week for my post-op appointment. I'll ask him whether I should stop or continue to lengthen until I reach my goal.
Optimistic1
Optimistic1, I am sorry you're feeling this way and dealing with so much. Having just done femurs, being a business owner, and such a busy person, I fully understand what you are saying. I felt like that also, and this effect of the surgery has been discussed here on the forum recently. It all will pass.
The main thing is that you're not causing any damage and that you have bone growth in the tibias now.
Call me, let's talk, you have my number, if not PM me.
The sleepless nights with pain are the worst. You are still the same man you were, if not better. This is temporary. Keep you're eye on the prize and end goal. It is so worth it in the end.
All the best !!
Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMUpdate:
It's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
It's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
My legs, nerves, tissues, and everything from my waist down are extremely tight. I can't stretch my legs more than half way. I can't stand up straight and my duck a** is very bad. I feel a constant pain in my right thigh around 8:00 - 9:00 pm now. This pain doesn't go away until about 8:00 am the next day. I still can bend my knees almost all the way on my left leg but not so much on my right leg.
On top of all these, I'm dealing with other personal and business matters. I don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed off at everything so easy now. I also get pissed off at everyone easily now. I really try to control myself at work.
My advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'm seeing Dr. M next week for my post-op appointment. I'll ask him whether I should stop or continue to lengthen until I reach my goal.
Optimistic1
Both segment LL is the biggest mistake an LLer could do.
I lost respect to any doctor that performs it, although the patient is responsible too because we wrote here thousand of times that LL is not a time trial and the patient should do one segment and then wait at least 1 year till consolidation stops to do the other segment.
Anything else is disastrous. Thats why you have so much problems while the strong majority of patients who did LL with precise 2 in only one segment have very good results without much problems.
Imo you should stop asap lengthening both segments. You should decide which segment you want more to continue lengthening and lemgthen only that for some cms more. So much pain and stiffness is not normal at all. Your body gives you ekergency signs that you should hear before the condition becomes irreversible.
I wish you ti be better in the next weeks.
Keep strong!
Quote from: Body Builder on May 29, 2018, 10:44:11 AMBoth segment LL is the biggest mistake an LLer could do.
I lost respect to any doctor that performs it, although the patient is responsible too because we wrote here thousand of times that LL is not a time trial and the patient should do one segment and then wait at least 1 year till consolidation stops to do the other segment.
Anything else is disastrous. Thats why you have so much problems while the strong majority of patients who did LL with precise 2 in only one segment have very good results without much problems.
Imo you should stop asap lengthening both segments. You should decide which segment you want more to continue lengthening and lemgthen only that for some cms more. So much pain and stiffness is not normal at all. Your body gives you ekergency signs that you should hear before the condition becomes irreversible.
I wish you ti be better in the next weeks.
Keep strong!
Body Builder,
Doing both segments at the same time is difficult. However, it's the safest option for the most gain and also to maintain proportion. I started out pretty short (5'5). Therefore, to get to 5'10 or 5'11, doing both segments seems to be to most viable option. The process is dangerous and extremely tough. However, if I did either tib/fib or femurs, I'd have stopped after either procedure and never look back. Furthermore, I can't afford much downtime and I don't think I have the courage to go through the process ever again. My business has suffered so much without me taking the lead. I have to outsource so many projects and it's such a major loss to my company. Now, I just want to recover as fast as possible and come back to work like an effective employer/leader that I used to be.
I did both segments and I'm almost done. Everyone's situation is different. I still don't encourage anyone to do both segments at the same time unless they really need it. OYG also did both segments and I think he has just stopped distracting recently. I haven't heard from him. Thank you and I'll keep everyone posted on my progress.
Optimistic1
Update:
6/1/18: I had my post-op today and the x-ray images show I have great bone growth in all regions: tibiae, fibulae, and femurs. I've lengthened a total of 7.2 cm in my femurs and my legs/knees are extremely tight. Therefore, Dr. M instructed that I stop distracting my femurs. I've lengthened a total of 5 cm in my tib/fib. I'm still flexible with my feet and ankles so he said I can lengthen another centimeter at the rate of .25 mm each and 3x a day. That's another 2 weeks of distraction. I'll try my very best to complete this process.
My legs are so tight that I can't stretch them out all the way. I don't know if any of you faced this situation at the end of your distraction. If so, how long did it take for you to stretch your legs out all the way after the distraction phase is done? Thank you.
Optimistic1
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMIt's been over 3 months since the surgery on my tib/fib and 2 months on my femurs. The pain is almost unbearable every night now. Daytime is okay (0-2/10 pain and only 1 to 2 pills of Norco a day are needed).
Did your pain subside after week 3 post-femurs, and return when you passed a certain amount of lengthening? I stopped needing painkillers regularly around 3 weeks after the femurs. Occasionally I'd have some nasty tendon pain at night, but it would go away after at most a week.
Also, do you have nerve, or non-neuropathic pain? (I wrote about the different kinds of pains at https://overrideyourgenetics.com/pain). I was put on Neurontin/Gabapentin since the beginning, and while I still had nerve pain, it was in no way as bad as iamready's (a 2015 Paley quadrilateral patient, for those who haven't read his diary yet).
Have you tried THC? It worked best for me. CBD could work well for nerve pain.
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMIt's so bad at night now that I'm doubting myself. I don't know if it's worth it anymore. I started to lose that feeling of being rewarded with a couple inches at the end of the process. I'm dealing with physical pain, mental suffering, severe sleep deprivation (no more than 2 hours of sleep per night for over 3 months), loss of appetite, immobility, loneliness, self-doubt, slight regret, and many more.
Not sure if this helps, but I went through the same (as have many others)... and I gave up on lengthening 
I admire you for continuing. And driving to work during distraction is just badass given what you've been going through.
But this might actually help - http://overrideyourgenetics.com/sleep/. It doubled my sleep quantity for only $200.
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMMy legs, nerves, tissues, and everything from my waist down are extremely tight. I can't stretch my legs more than half way.
I also have lost flexibility in my ankles, from 15 degrees dorsiflexion down to 8. But after stopping lengthening the tibias, and standing on a slantboard with the walker, the flexibility is slowly coming back (10 degrees now). Hang in there! I can testify that after the pain is gone, the memory of it is purely theoretical; it's as if it happened, but in the very distant past, and not in a visceral way.
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMI don't have the energy for anything. I just want to stay in bed and do nothing. I'm no longer myself. That motivated and ambitious man is long gone. I get pissed off at everything so easy now.
Same here. Man how pissed I'd get when I dropped something on the floor and had to get the wheelchair next to it and bend to pick it up.... GRRR.
But you kept going with the lengthening in spite of the pain and business problems, so I'd say that motivated and ambition man is still there. And now that you're seeing the end of the tunnel, he'll be back!
Quote from: Optimistic1 on May 29, 2018, 04:24:20 AMMy advice to all future CLL is DO NOT do both segments at the same time. It will break you. It's not so much about how painful it is. It's more about how long you can endure that pain. However, if you want the most gain then that's your safest option. You can space them out but I think most of you will be discouraged by the pain and suffering after the first operation.
I'd reserve judgment on this. The new STRYDE nail is a game changer. I met the first patient and he is walking with crutches two weeks post-op. He should be walking unaided soon. Given that walking is the best PT, I think flexibility and mobility will be much better for STRYDE patients.
Quote from: Optimistic1 on June 02, 2018, 05:56:39 AM6/1/18: I had my post-op today and the x-ray images show I have great bone growth in all regions: tibiae, fibulae, and femurs. I've lengthened a total of 7.2 cm in my femurs and my legs/knees are extremely tight. Therefore, Dr. M instructed that I stop distracting my femurs. I've lengthened a total of 5 cm in my tib/fib.
Those are amazing numbers! My left knee has been tight at only 3.5cm in the tibias and 3cm in the femurs. Most likely due to insufficient PT at home. But I developed a nasty nerve pain that combined with being fed up with the process, and my short wingspan, have determined me to stop lengthening at 3.5+3.5cm.
Quote from: Optimistic1 on June 02, 2018, 05:56:39 AMMy legs are so tight that I can't stretch them out all the way. I don't know if any of you faced this situation at the end of your distraction. If so, how long did it take for you to stretch your legs out all the way after the distraction phase is done? Thank you.
I've been in the same situation with the left knee. What helped most was the AlterG machine. Brought my knee extension from ~15 degrees to zero in 10 minutes.
.
hey man how is your lengthening going?
Quote from: OverrideYourGenetics on June 03, 2018, 01:31:42 AMDid your pain subside after week 3 post-femurs, and return when you passed a certain amount of lengthening? I stopped needing painkillers regularly around 3 weeks after the femurs. Occasionally I'd have some nasty tendon pain at night, but it would go away after at most a week.
Also, do you have nerve, or non-neuropathic pain? (I wrote about the different kinds of pains at https://overrideyourgenetics.com/pain). I was put on Neurontin/Gabapentin since the beginning, and while I still had nerve pain, it was in no way as bad as iamready's (a 2015 Paley quadrilateral patient, for those who haven't read his diary yet).
Have you tried THC? It worked best for me. CBD could work well for nerve pain.
Not sure if this helps, but I went through the same (as have many others)... and I gave up on lengthening I admire you for continuing. And driving to work during distraction is just badass given what you've been going through.
But this might actually help - http://overrideyourgenetics.com/sleep/. It doubled my sleep quantity for only $200.
I also have lost flexibility in my ankles, from 15 degrees dorsiflexion down to 8. But after stopping lengthening the tibias, and standing on a slantboard with the walker, the flexibility is slowly coming back (10 degrees now). Hang in there! I can testify that after the pain is gone, the memory of it is purely theoretical; it's as if it happened, but in the very distant past, and not in a visceral way.
Same here. Man how pissed I'd get when I dropped something on the floor and had to get the wheelchair next to it and bend to pick it up.... GRRR.
But you kept going with the lengthening in spite of the pain and business problems, so I'd say that motivated and ambition man is still there. And now that you're seeing the end of the tunnel, he'll be back!
I'd reserve judgment on this. The new STRYDE nail is a game changer. I met the first patient and he is walking with crutches two weeks post-op. He should be walking unaided soon. Given that walking is the best PT, I think flexibility and mobility will be much better for STRYDE patients.
Those are amazing numbers! My left knee has been tight at only 3.5cm in the tibias and 3cm in the femurs. Most likely due to insufficient PT at home. But I developed a nasty nerve pain that combined with being fed up with the process, and my short wingspan, have determined me to stop lengthening at 3.5+3.5cm.
I've been in the same situation with the left knee. What helped most was the AlterG machine. Brought my knee extension from ~15 degrees to zero in 10 minutes.
Hi OYG,
Thank you for checking up on me. Here are my responses to your questions. My pain improved a lot 3 weeks after the surgery on my femurs. I managed my pain better by knowing that I must eat something every time I take the Norco. It works great. I didn't do that after the surgery on my tib/fib so I kept on having that minor pain/discomfort. I remember my mom massaging my feet several times a day for weeks.
At first I thought I have nerve pain but it's just me not eating when taking the Norco so I couldn't activate the potency of the medication. I even asked Dr. M to prescribe me some Gabapentin. It didn't work so I stopped taking it after 2 days. Several of my employees suggested that I try THC but I refused. I don't like it. Also, I don't want to set a bad precedent at the company where the consumption of THC is permissible.
I still have another week and a half to go. It's good that you're done. Good luck on your recovery. Don't worry about those who put you down for stopping the process early in light of the amount of money you've spent. They don't know what they are talking about. Only those who've been though it or dealing with it can truly understand what you went through. They don't understand the pressure we have to deal with. Though money is not an issue with me but I don't have the luxury of sitting at home and lengthening without having to worry about other things. Life goes on and we have to run, not walk, to stay ahead of everything. I don't want to throw away my career and my company.
Quote from: doomsday on June 12, 2018, 09:48:17 PMhey man how is your lengthening going?
Hi Doomsday,
It's getting tougher everyday as I am reaching finality in this process. I'll post an update here for everyone to see.
Update:
2 days short of 4 months since my tib/fib surgery (February 15). I also had the surgery on my femurs a month after my tib/fib. I recap the timeline here so you guys don't have to go back to read my first journal entry.
I stopped lengthening my femurs 9 days ago after reaching 7.5 cm. My knees are super tight. I can't stretch my legs out all the way. That's the only reason why I stopped before reaching my goal of 8 cm. The pain in my femurs improved drastically shortly after the distraction. I have literally no pain in my femurs now. However, I think I might have what is normally referred to as myositis ossificans in my left femur. It is the formation of bone tissue inside muscle tissue after a traumatic injury to the area. This injury usually is the result of an acute deep-muscle bruise or repeated muscular trauma to the same spot, and rarely is caused by a bad muscle strain. I started feeling this hard knot in my left thigh several weeks after the surgery on my femurs. I ignored it thinking it could be one of the screws and because the pain in my femurs at the time was so intense that I that keep on taking the Norco to suppress it. Now, it causes me some pain when I press hard on it or when I stretch. I did a lot of research on this and Dr. M said the body should absorb it over time. I've been massaging it hoping to dissolve it sooner.
I'm still distracting my tib/fib twice a day at .25 mm each time. I was distracting 3x a day for a week then went back to 2x a day because I don't want to have any nonunion issue. My bone growth is great now but I still don't want to risk it. I am really scared of having another surgery. I think Rocky is looking at stem cell treatment in the event of a nonunion. I don't want to even think about that until the rod removal procedure. As you remember, I was having slow or no bone growth in my fibula bones. Therefore, Dr. M slowed down my distraction rate to only twice a day since March. That's why it's been almost four months and I'm still distracting my tib/fib and I'm not even at 6 cm.
I started taking Tylenol PM at night to help with my sleep. My sleep has improved a little bit. I'm down to 1.5 to 2 Norco a day. My pain is at the minimal during the day and I only take the Norco before stretching. Night time is bad but it has improved a lot since I stopped the distraction on my femurs. I have another week and a half before the completion. Everything else is the same. I'm dealing with the stress at work and also in my personal life. Something happened yesterday in my personal life and I went through an episode of depression. I stayed in bed and didn't want to eat anything. I woke up early this morning, distracted my tib/fib, stretched, completed my PT session, went to work, had staff meeting, got home at 4:30 pm and I feel okay now. No matter what, life goes on so we have to adapt and be resilient. Let me know if you have any questions.
Optimistic1
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