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Author Topic: Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.  (Read 10713 times)

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FormerKidd

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Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.
At the Paley Institute, they recommend Tylenol.  A lot of the others have anti-inflammatories which can apparently impede bone growth.
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Android

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At the Paley Institute, they recommend Tylenol.  A lot of the others have anti-inflammatories which can apparently impede bone growth.

Thanks, found the info on this page.

Quote
You may use Tylenol (acetaminophen) for pain control following surgical intervention. However, you should refrain from using any anti-inflammatory for the first year following surgery as it can slow the growth of your cells. These anti-inflammatory medications include medications such as Advil, Aleve, Ibuprofen, Naproxen, and Celebrex.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

OverrideYourGenetics

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Contradictory x-rays
« Reply #64 on: April 06, 2018, 04:25:26 AM »

I had my first x-ray yesterday and I thought I saw some early bone consolidation and my fibula bones are not in alignment. I emailed Dr. M some of the images and asked for his opinion. He said everything looks fine and my bone is generating at an ideal rate.

So Dr. M said about the March 7 x-Ray's that bone was generating at an ideal rate.

Then a week later...

I had my second x-ray at Dr. M's office and was informed that my bone growth is not so good. He measured my distraction at 1.5 cm but I measured it at 1.35 cm. He said there's little or no bone growth in my fibula bone.

Can the x-rays show an "ideal rate" then a week later, "growth not so good"? You were taking Ibuprofen all along. What changed?

Or is looking at x-rays not that reliable for determining bone growth? Unicorn888 might suggest the same:

-  Watch your fortnightly XRAY carefully, needs to show growing and bridging CALLUS (no matter how faint), don't rely blindly on your doctor
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.

Optimistic1

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OverrideYourGenetics,

Based on my recollection, I didn’t start taking Ibuprofen until after or a couple of days before the first  x-ray was taken. Therefore, there were signs of bone formation. However, when I took the second x-ray, was on Ibuprofen for about 2 weeks. That’s why there was no bone growth during those 2 weeks. My doctor didn’t know I was taking Ibuprofen at that time and I didn’t know it could delay my healing process. The last time I took Ibuprofen was the night before my femur surgery, March 14, 2018). It’s been 3 weeks since I stopped taking it so I’m hoping to see some bone growth tomorrow when I take my x-ray or I have to look into a bone graft procedure which I don’t like. My Dr. was very mad when he found out I took it. I feel so bad and shouldn’t have listened to my primary care doctor. I didn’t want to abuse the Norco so I took it with Ibuprofen to increase its effectiveness and it did.
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Optimistic1

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Thanks, found the info on this page.

I didn’t know that until after I stopped taking Ibuprofen and started doing research. I’m so worried now. I hope everything will turn out to be okay in the end.
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Optimistic1

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Honore,

True. 2 nails in the Tibia bones and 2 in the Femurs. Little or no pain in my Tib/Fib region. Also, I r covered much faster after my Tib/Fib surgery. I don’t use crutches in fear of falling. I move around with my wheelchair and practice standing and walking with my walker. I can get in and out of bed pretty easy. I can move around the house, get onto the shower chair, dress myself and some other things on my own. However, there’s a strategy in every move I make. I still can’t get the wheelchair in and out of my car by myself now.

I’m hoping to regain my ability to walk by the end of August. My legs are so weak now. I’m still in a lot of pain from my femur surgery so it kinda discourages me from fully exercising. I think gaining 10 cm will be a challenge because the tightness is double since I’m lengthening both segments at the same time but let’s see.
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Optimistic1

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Phew, that's intense. Maybe once it's all said and done you'll be happy, but at this moment in time, it's painful and excruciating. These are the kinds of things we tend to forget after some time has passed, so it's good to have it in writing now that it's a real struggle that should be avoided if at all possible.

Sorry to hear about the troubles you're having with your business. When it rains, it pours... But it will eventually stop.

Ibuprofen seems to be the serial offender these last few updates in the diaries. Were you not warned against taking them? It's such a common pain reliever that you'd think patients would be dissuaded from using it by now. I think most Americans would reach for it when in pain, since it's OTC and is for the most part harmless.

Sucks to not have an appetite, but eat anyway. Make it your job to eat, a box you have to check off by end of day. Let your body do the heavy work by feeding it.

And good tip about sleep, no need to stick to the once a night schedule like everyone else. Every minute helps!

Best of luck.


Android,

I wasn’t warned about it or I’d have never taken it. My primary care doctor recommended it. ;(
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Optimistic1

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7th week post-op on tib/fib and 3rd week post-op on femurs: My pain is improving but I still can't sleep at night. I get about 2 hours per night so I try to get some sleep during the day which is difficult for me as I have to to PT, exercise, and work. The pain on my left thigh is improving a little bit. I experience more tightness now. PT is painful and exhausted and I'm having it 5 days a week now. My PT guy is getting better. His wife is also a PT and a professor at a University. I think he consults with her about my condition so he has a lot of new stretching routines that help me with my sciatic nerve. I'm not eating that well so I'm drinking whole milk, soybean milk, and Ensure milk. I also take Vit. D, Cal., Vit. K1 & K2, and Salica.

I had my x-ray yesterday. Looks like I have some bone growth in my Tib/Fib but I can't confirm until I hear back from the doctor. You can click on the links so see the images. The first link has my tib/fib images and the second link has my femur images.

https://imgur.com/gallery/dPAXT
https://imgur.com/gallery/PrYyV

I'm still lengthening 2x/day on my Tib/Fib at the rate of .25 mm each and 3x/day on my Femurs at the rate of .33 each. I don't mind distracting slowly because it will help with the tightness. I just saw OverrideYourGenetics' diary and he is also doing bilateral Tib/Fib and Femurs. What a brave man. I'll be following his diary to see if he has any tips. For now, I don't have any new tips.
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Android

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Thanks for the update, x-rays are great to see too. Hard to see much callus formation, the images are a bit small. Odds are you're fine.

Keep it up, milkman! I actually drink Schmilk a lot (I like chocolate flavor, just add milk; I also add whey protein), I might lean on it often during my journey.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

LAGrowin

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Hi Optimistic1.  Hope that things have improved for you a little. I admire your courage to get both of these surgeries out of the way together.  It will be over before you know it and you'll be consolidating.

I stopped distracting just over 1 week ago and already feel a huge improvement in my legs (within the past few days).

Keep us posted.  Wishing you well.
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LAGrowin

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Hi Optimistic1,

Wondering how you are doing ?  Hope things have improved for you. I'm sure you are coming to the end of your lengthening soon?

Wishing you all the best.
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Optimistic1

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Hi Optimistic1,

Wondering how you are doing ?  Hope things have improved for you. I'm sure you are coming to the end of your lengthening soon?

Wishing you all the best.

Hi LAGrowin,

Thank you for checking in. I've been dealing with a lot of business matters and personal life lately. Also, I'm not really in a good mood due to the fact that I don't think my lack of bone growth situation is improving. The bone growth in my femurs is okay but I don't see anything in my fibula bones. This really scares me as I don't like stem cell injections or undergoing a bone graft procedure. Dr. M instructed me to keep my lengthening rate in my tib/fib at .25mm each and 2x a day. This really slows down my progress. Therefore, I think I'm just barely half way done and this is my third month (11th week) for the tib/fib and second month (7th week) for the femurs.

How's your recovery? Are you experiencing any tightness anymore? If so, to what degree? Any pain and where? I'm so happy for you. Are you walking unassisted soon?

Optimistic1
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Optimistic1

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Hi Everyone,

It’s been awhile since I last updated my diary. I’ve been dealing with a lot of matters in by business and personal life. I just had my x-ray done and looks like there’s no progress on my bone growth or the lack thereof. This worries me as I do not want to undergo stem cell injections or bone graft procedure(s). I’ve been doing almost everything instructed. I guess it’s just my body that doesn’t generate bone sufficiently. I posted the x-ray images here for everyone to see. Please take a look and let me know especially in my fibula region if there's still hope. Looks like there’s no progress in there.

I’ve been lengthening very slowly in my tib/fib region: .25mm and 2x a day. I’m currently lengthening at a rate of .33mm and 3x a day in my femurs. Currently, I’m down to 3 Norco a day and I work every day for 4-5 hours a day. I eat 3 meals a day. I take Vit. C, D, Cal, and Celica. I also started taking Vit. B12 to give myself some energy to go to work. I drink 2 glasses of almond milk and 1 Ensure protein shake a day. I do PT 6 days a week and stretch on my own 4-5 times a day. I stretch every time I distract/lengthen. The only thing I think I’m lacking is sunlight. I don’t go in the sun that much. Any advice on how to increase the rate of new bone formation is much appreciated. Thank you.

Tib/Fib
https://imgur.com/gallery/rmYOnFq

Femurs
https://imgur.com/gallery/h8YMPQO

Optimistic1
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short2tall

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I wouldn't say there's zero growth in your tibias, there is definitely some clouding in there. I would really try to get some sun Optimistic, it seems to help a lot.
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Bilateral femurs with Dr. M on March 1st
Starting height: 5'8.5"
Shooting for 5'11"

doomsday

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both look good.
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Optimistic1

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New Update:

I saw Dr. M last week for my post-op for both tib/fib and femurs. Dr. M examined my x-ray and confirmed that my condition, lack of bone growth, has improved a little. Therefore, he doesn't feel the need for a bone stimulator and also did not mention stem cell injections. He said that I should get more sunlight. I didn't have any sunlight since the first surgery (February 15, 2018). The most sunlight I ever received was through the windows of my car while driving to work (10-15 minutes each trip). However, it's being weakened by the tints on my widows and my pants. Besides the Ibuprofen I initially took for about 2-3 weeks, the lack of sunlight could also be the reason why my bone growth was weak. No wonder why I couldn't grow any new bone even when I was eating healthy, taking all kinds of supplement, and drinking 3 different kinds of milk daily. I'm now sunbathing 15 minutes a day and I've been doing it for the last 3 days. We'll see if my bone growth will improve at the next post-op.

I don't know if it happens to you as well but my measurement is always a little off compared to Dr. M's. He measures the gap on my bones from the x-ray and I measure by multiplying the number of days I've lengthened by the number of times I lengthen per day and the amount I lengthen each time to get the total centimeters. However, Dr. M's number is always about half a centimeter more than mine. Maybe there's something wrong with my ERC machines.
 
According to Dr. M, I have lengthened about 9 centimeters in total (5 in my femurs and 4 in my tib/fib). According to my own measurement, I only got about 8 centimeters. That's a big difference. My physical therapist measured my height last Friday (May 11, 2018) with his own tape measure. He measured very carefully and by each segment such as lower leg, upper leg, and from there to my head in addition to the typical measurement from head to toe. I was so surprised when he said he got 70 inches (5'10) and that I'm 2 inches short of being 6 feet. I told him it's impossible because based on my own measurement, I should be around 5'8 or 5'8.5. My female friend measured me about a month ago and I was at 5'7.5. Remember, I started out at 5'5 or 5'5.5. Just to recap, I started lengthening my tib/fib on February 23 but took a break for 2 weeks due to lack of bone growth and can only lengthen 2x a day at .25 mm each. I started lengthening my femurs on March 23 at 3x a day and .33 mm each time. I'll have Dr. M measure me at the next post op just to be sure.

My legs/knees are really tight and it's all from my femurs. I have knee pain more often now. I started having problems with my femurs from the get go. Tib/fib seems like a walk in the park after the first 3-4 weeks. No pain, just some discomfort. I can no longer stretch my legs out all the way. I get about 150 to 160 degrees. I can do all other stretches without any major problems except that I lose my flexibility slowly every day. I can still get my heels to pretty close to my butt, about 2-3 inches away. Based on my reading of the diaries on here, the tightness with stretching the legs out all the way is common after 5 centimeters have been lengthened and it varies from person to person. However, it's so tight now that I'm worried I might pop my nerves. When I stretch my legs out all the way, every inch of my legs is very tight. My PT said last Friday "wow, you're so tight, are you sure you still want to keep going?" What do you guys think?

I still can't sleep for more than 1-2 hours a night. Sometimes I'm able to sleep for 4 hours but it's rare. Last night was really bad. The pain escalated to about 7-8 and it prevented me from getting any good sleep. I took a Norco at 1:39 am I was able to sleep a little after that. Of course, I woke up every 1-2 hours. I feel much better this morning. Currently, I don't have any pain and I just finished my stretching session (45 minutes) and riding my indoor bicycle (10 minutes). Thank you for reading. Let me know if you have any questions. Your comments and suggestions are always welcome.

Optimistic1
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short2tall

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   That's great to hear that you are getting better Optimistic1. Getting some sun is definitely going to help. I think I may have seen you at Dr. M's office last week, were you there on Tuesday? He also measured the gap in my femurs to be longer than what I thought they should be. He came up with 6.8 when I should have been at 6.5cm. I am definitely going to go by my measurements rather than his, he even said there will be some error trying to measure from the x-ray.
   Sorry to hear about the tightness you are experiencing though. That's one of the more difficult aspects of doing quadrilateral lengthening, because even though the bones are separate all of the nerves and tendons are connected. If I were you I would probably aim for 12cm total, 6 and 6 on each segment. However if it becomes unbearable I think 5 + 5 would still be a really nice gain.
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Bilateral femurs with Dr. M on March 1st
Starting height: 5'8.5"
Shooting for 5'11"

Optimistic1

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   That's great to hear that you are getting better Optimistic1. Getting some sun is definitely going to help. I think I may have seen you at Dr. M's office last week, were you there on Tuesday? He also measured the gap in my femurs to be longer than what I thought they should be. He came up with 6.8 when I should have been at 6.5cm. I am definitely going to go by my measurements rather than his, he even said there will be some error trying to measure from the x-ray.
   Sorry to hear about the tightness you are experiencing though. That's one of the more difficult aspects of doing quadrilateral lengthening, because even though the bones are separate all of the nerves and tendons are connected. If I were you I would probably aim for 12cm total, 6 and 6 on each segment. However if it becomes unbearable I think 5 + 5 would still be a really nice gain.


Short2tall,

Yes. I was there. I was trying to be as discrete as possible because I look horrible now. This process really negatively altered my appearance from hair to skin to muscle mass. However, these things could be fixed easily once I'm done with the lengthening process. You're correct about all the nerves and tendons being connected. Both of my legs are really tight now and I think I'm at about 9 centimeters in total.

Yes. I'll try to get to 12 cm on both segments combined and if I can't get there, I'll stop. I don't want to incur any permanent damage to my knees/legs.

Looks like you're doing great. Keep it up. You're almost there.
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Petite888

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Hi Optimistic1,

Good to see you are doing relatively o.k. but the tightness must be a killer. If it’s getting too much for you, have you considered the option of stopping to let yourself heal up, and deciding a year down the line if you want to re-break and go for a few extra centimetres then? Obviously more expensive but I think it would be safer, less stress on your body, and you could even go for more than your planned, original goal.  Also gives you a year to re-evaluate how important those few centimetres are to you and if Dr M’s measurements are correct, you may be happy with your heigh already?
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Optimistic1

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Hi Optimistic1,

Good to see you are doing relatively o.k. but the tightness must be a killer. If it’s getting too much for you, have you considered the option of stopping to let yourself heal up, and deciding a year down the line if you want to re-break and go for a few extra centimetres then? Obviously more expensive but I think it would be safer, less stress on your body, and you could even go for more than your planned, original goal.  Also gives you a year to re-evaluate how important those few centimetres are to you and if Dr M’s measurements are correct, you may be happy with your heigh already?

Hi Petite888,

Thank you for your advice. Both of my legs are extremely tight now. I can't extend them all the way even with the help of my physical therapist. I think I can only get about half way and to get to about 3-4 inches off the ground, I have to suffer a lot of pain. I've been doing PT 6 days a week with 2 different physical therapists as one doesn't work on the weekend and I stretch 4-6 times a day on my own. However, when your nerve and tissues can't stretch anymore, there's little to nothing you can do but stop. I don't know who else is experiencing this and if they're, how are they dealing with it other than toughing it out?

I did take a break for 1 day and it helped a little bit. I think I'm done after this. No more surgery. I'll keep pushing until my next post op (3 weeks away). I'll ask Dr. M to measure me to see if I'm really 5'10.5. If that's the case, I'll stop immediately.

I'm dealing with so much in my personal life. I'm also dealing with so much at work. My company is suffering because of my immobility. While my employees are good, it's not the same without me at the forefront of every battle. We're losing clients and our first quarter revenue had decreased substantially. The second quarter revenue is not looking so good either. Also being on painkillers all day everyday for 3 months straight can really change one's personality/behavior. When you factor in the many sleepless nights and pain and suffering, it is scary. I commend all the limb lengtheners out there for going through with this. They are the true warriors. I'm not being greedy for doing both segments at the same time. I just can't afford any downtime. I'm already seeing a setback in my career due to the downtime.

How's your situation? Is it getting any better? Dr. M is good in a sense that he knows when to stop and/or slow down the distraction. He made me stop twice and reduced my distraction rate until there was some bone growth in my tib/fib. I hope everything will turn out fine for you.

Optimistic1
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Optimistic1

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Petite888,

I just realized you haven’t done CLL. My advice to you is to do a lot of research on your doctor and you have to really need it to make it worth it. If I were at least 5’8 I’d have never subjected myself to this painful process. I was only 5’5 or 5’5.5. Even with lift, I wasn’t able to get to average height and I have a limit on lift, never more than .75 inch plus a 1 or 1.25 inch shoes. However, being at this height didn’t affect anything in my life. I chose this procedure mostly for personal fulfillment. I feel I’ve accomplished so much in life plus with my personality, I was not meant to go through life in a 5’5 body. I’m not saying being 5’5 is bad in general. Many people who are even shorter than that but are living a happy life. In fact, it’s average height in several SEA countries, like Vietnam. Best of luck to you and feel free to PM me if you have any questions.
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Petite888

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Petite888,

I just realized you haven’t done CLL. My advice to you is to do a lot of research on your doctor and you have to really need it to make it worth it.

I am trying to do all of my research presently, but it’s difficult to say the least. I want Precice, but all the established Dr’s who use Precice are thousands of miles away, and I would need to do it somewhere I could easily fly back from. It would be really difficult for me to stay in the states or Korea for 3 months as I would miss my kids too much.

I know how you feel when you say you don’t feel like you were meant to be your height.  I think most of us here feel cheated in that regard. My mum is a good 3 inches taller than me and I always though I’d reach her height at least.....soo unfair when I stopped growing at 15!

Thank you for taking the time to message even though you must be going through hell at the moment. I am rooting for you  ;)
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Android

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Sorry to hear about the problems you're having, both CLL and your business. The added stress doesn't help either situation, I hope that you recover from them soon. Wishing you the best.

And I understand your message about not needing the procedure but wanting it. I could have been fine without ever knowing about it, but when I found out, I made it my mission to learn more about it and someday do it. You're almost there!

Petite, about you wanting to reach your mom's height, pretty much what my mom said too. We all aspire to fit in with our environment.
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5'4" and 1/4" (163.2 cm) | United States | early 30s | Cross-lengthening with Dr. Solomin & Dr. Kulesh

Optimistic1

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I am trying to do all of my research presently, but it’s difficult to say the least. I want Precice, but all the established Dr’s who use Precice are thousands of miles away, and I would need to do it somewhere I could easily fly back from. It would be really difficult for me to stay in the states or Korea for 3 months as I would miss my kids too much.

I know how you feel when you say you don’t feel like you were meant to be your height.  I think most of us here feel cheated in that regard. My mum is a good 3 inches taller than me and I always though I’d reach her height at least.....soo unfair when I stopped growing at 15!

Thank you for taking the time to message even though you must be going through hell at the moment. I am rooting for you  ;)

Petite888,

I know how you feel. I stopped growing at 14 I think (7th or 8th grade). My dad was 6'0 in his younger years and he's about 5'11 now. My brother is 5'10 and I'm only 5'5. Can you believe that? Lol.

Think of it this way: Your height was taken away from you but you were given something else much more value such as intelligence and hard work. With those two qualities, you can achieve so much including paying for this CLL procedure. Sometimes I feel that I'd have only achieved about 10% of what I have now if I were going through life as a 6 foot tall man. I'd have been so arrogant and wasted my life away with partying and sleeping around. Now, I can fix my short stature issue and still retain what I've accomplished. Good luck and feel free to PM should you have any questions.

Optimistic1
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Optimistic1

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Sorry to hear about the problems you're having, both CLL and your business. The added stress doesn't help either situation, I hope that you recover from them soon. Wishing you the best.

And I understand your message about not needing the procedure but wanting it. I could have been fine without ever knowing about it, but when I found out, I made it my mission to learn more about it and someday do it. You're almost there!

Petite, about you wanting to reach your mom's height, pretty much what my mom said too. We all aspire to fit in with our environment.

Android,

Thank you. I'm trying my best everyday as I'm winding down this painful process.

Optimistic1
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Optimistic1

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Update:

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
« Last Edit: May 29, 2018, 06:36:55 AM by Optimistic1 »
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LAGrowin

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Update:

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 !!
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Body Builder

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Update:

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!
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Optimistic1

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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!

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
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Optimistic1

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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
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OverrideYourGenetics

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Impressed by your resolve
« Reply #92 on: June 03, 2018, 01:31:42 AM »

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).

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.

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.

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.

My 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.

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.

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!

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'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.

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.

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.

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.

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.
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My diary. Tibias+femurs 3.75+3.75cm at the Paley Institute (5'5" -> 5'8") in my late 30s.
One of the last patients to use the PRECICE 2.2 nail. I met the first STRYDE patient and I strongly recommend the new STRYDE nail instead.
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