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[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

[OverrideYourGenetics]

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.

[doomsday]

.

[doomsday]

hey man how is your lengthening going?

[Optimistic1]

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.

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.

[Optimistic1]

hey 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.

[Optimistic1]

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

[Johnson1111]

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

Hey optimistic glad things went well. That is a great height increase in the femurs congratulations. Dr M seems great.

I am no expert but I think a lot of the temporary issues you might have with the legs like he said will be naturally absorbed and I have read a lot about how after nail removal and the initial weight gain a lot of those small kinks and pains may go away completely. It is hard for a lot of us to realize in the moment but a lot of the pains patients talk about within 1 year of having the surgery etc will not always necessarily be there years down the road as the nail is removed, your body gets used to things further Pt etc.

Do you think your level of flexibility was good and positive in your experience with LL? Or do you wish you could have been more flexible as it would have helped more? Or would you say it would not have mattered and it is more genetic?

[Movie]

Hey Optimistic, any updates?

[Optimistic1]

Hi Johnson,

I think being flexible helps you a little bit during the distraction phrase but not much. I was flexible before LL but lost that rapidly during the distraction phrase. You stretch to not gain/regain flexibility but to not lose it too fast when lengthening, especially during the last month. I don't think it would help much whether you stretch before or during the lengthening process, at least it was for me. However, that's just my own experience. I lengthened both segment at the same time and lengthened quite a bit so it was tough for me. Good luck.

[Optimistic1]

Hi Movie,

I've been wanting to post an update but have always been so swamped. Your inquiry motivated me so I'll update everyone about my progress now.

[Optimistic1]

Hi Everyone,

It’s been almost 5 months since I last updated you on my progress. As you may recall, I lengthened both segments (tib/fib & femurs) and also lengthened quite a bit. I didn’t reach the maximum centimeters I intended to because I don’t want to have any lifelong problem. Based on my own measurements, I lengthened 6.5 cm on my tib/fib and 7 cm on my femurs. However, when the doctor measured the actual length on my x-ray images, it appears I lengthened 7 cm on my tib/fib and 7.5 on my femurs and I almost got 6 inches altogether (5.7 inches to be precise).

I stretched 4-5 times a day during the distraction phase but it didn’t help much and I lost my flexibility slowly every day. When I completed the distraction on June 23 (exactly 4 months), the ROM on my right leg was 65% and 60% on my left leg. That was really bad. I didn’t walk while distracting because I didn’t want to bend the rods as I heard some horrible stories from others. Besides the pain and other problems with my business, it was a very smooth journey for me. No complication, no infection, or anything others experienced. I did developed myositis ossificans on my left femur but it went away shortly after I completed distracting. The pain was bad for me but went away completely and I stopped taking Norco about a week after I was done with the distraction.

Due to the fact that I was in a wheelchair for so long, my legs were extremely weak and I couldn’t even use the walker. I wasn’t able to use the walker to walk from my car to my office until early September. It took me less than a month to graduate from the walker and move on to using crutches. It also took me about a month to graduate from crutches and start using a cane. I’ve been using a cane for a week now and I think I can get rid of it in a month. I can walk unassisted now but my gait is weird. I forgot to mention that my legs are still not completely straight. They are about 10-15% ROM on the left and right. I think I can completely straighten them in about a month. I know my progress is quite so slow compared to others but keep in mind I lengthened both tib/fib and femurs at the same time (one month apart for both surgeries) and lengthened quite a bit. I am hoping to walk normally in 2 months.

I lost all of my employees except for 1 since I started the journey. I’ve been through so much and almost lost my business. I’ve been working every day (Monday-Sunday) from 8:00 am to 5:00 pm to save my business. So far, I’ve regained about 90% of my workforce. Fortunately, the business is growing fast and it’s on the right track to become bigger and better than before. Being able to work during the distraction phase really helped me save my business. I don’t want to bore you guys about my problems but just remember one thing: life goes on and nobody is going to wait for you to recover so you must anticipate and prepare for any tragedy that comes your way. After I started using the walker for about 4 days, I was rear ended in a total loss accident and was taken to the hospital. I was pushed into another car and mine was totaled as well. WTF? I know, right? Lol.

Well, it’s all worth it for me. I am about 5’11 now and with shoes and hair I can easily be over 6’0 and it feels great. My physical therapist measured me last month lying down and he put me at 6’1 but that sounds very unlikely. I wear extremely flat shoes now (less than 1/8 inch heel). Almost everyone at the firm is new so no one knows about my surgery except for that 1 employee who said I look so tall. I told her I’m the same height. She was on the subject for about 2 days and moved on. I didn’t really care. I held a meeting 2 weeks ago with all the doctors and providers in town, and I felt so powerful. They respect and look up to me like never before. Due to my acquired wealth, social status, and a high level of education, the added height really improved my life. I now feel nothing can hold me back and I can achieve anything I set my mind to. Remember, being taller might not solve all of your problems. However, it will improve your life drastically if you already had a successful life before that. As for women, I never had any problem with them before and I’m like a magnet now. Lol. However, I decided to go MGTOW for now while I am rebuilding my business so nothing to talk about on this subject.

[doomsday]

damn man! 166 to 180 cm must be huge. Are you worried about sitting height or were you just short legged?

[totallyred]

Myositis ossification is fatal in 10% of cases:-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798355/


Another fatal side effect of cll.

[totallyred]

Would you please ask dr. M for the same?

[Movie]

good approach to take it slowly, no need to rush really It will all fall into place eventually!

dang man glad you're ok! congratulations on your added height! I'll be doing the same thing with Dr.M since I reside here in LA and the funds allow fortunately.

bless up Optimistic Wish you a speedy recovery

[HeightGain]

Myositis ossification is fatal in 10% of cases:-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798355/


Another fatal side effect of cll.

The link and the condition you mention (which is rare) are different, is there a reason for that? It would be useful to see a paper, even a case report, of such a disorder in LL or even nailing. I can't find any

[HeightGain]

Great result. Sounds like you have a great outlook and life anyway and this can make it even better

[Optimistic1]

Hi Everyone,

Just a quick update for everyone. Things are getting better in my professional life. Everyone at the firm is up and running. I enjoy working with the new crew a lot. They work hard and respect me a lot more than my old employees did and not rolling into the office in a wheelchair helps.

I went to True Religion and bought some new jeans last night. They only have 1 inseam and that is 34 in the entire store and it fits me so I don’t need to alter it. It is such a great feeling that only short guys like us can testify to. In the past, whenever I bought a pair of pants I would have to shorten the length or it won’t fit.

I gained about 20 lbs so I went from 145 to 165. I know a lot of CLL patients lose weight during the distraction phase. I didn’t eat a lot but I was taking Ensure protein every night and drinking 3 different types of milk daily. Plus, I was drinking the silk chicken soup mixed with herbal medicine every other night for 4 months straight.  This type of chicken soup requires a lot of work that takes about 4-6 hours each day and my mom was nice enough to do that for me. She bought the highest grade herbal medicine to cook with the silk chickens. I think that’s why I was gaining weight instead of losing it. I’d recommend this to future CLL if you want to maintain your weight. I went to the DMV this morning to change my weight and height on my ID. I listed myself as 165 lbs and rounded up my height to 6’0. It is an amazing feeling.

To recap, I started using a cane on November 5 and got rid of it by November 20 (roughly 2 weeks). My gait was horrible at first but it’s getting better every day. I think I might be able to have a normal gait by the end of December. I started having pain in the inner part of my lower right tibia where the screws are. I think it is because I’ve been walking a lot and over exercising. I do about 20 minutes of stationary bike in the morning and afternoon plus 5 minutes of treadmill in the morning and 22 minutes in the afternoon. I walk around my building and to lunch during the day at work. I walk to other places like restaurants and malls on the weekend. If I don’t walk or walk less, I don’t have any pain. If I walk a lot then the pain kicks in at around 4:00 pm until I fall sleep at around 11:30 pm. The pain is about 1-2 out of 10. If I put my right leg down on its side then the pain goes away. Not bad, just bothersome. For the CLL veterans, did you experience the same thing? If so, how long did it last? What did you do to avoid exacerbating it? Thank you very much.

[Dirona]

Good that the risk you took turned out well for you Optimistic..I will be going for internal femur sometime..May be with Dr M,Paley or Dr R...I am starting at 166 cm and I am aiming 173..(I am realistic and not optimistic )But I will have to give it some time before I take the plunge due to other career/personal issues that are plaguing me right now..

[Movie]

that's so cool bro, glad everything turned out in your favor

[Movie]

any updates Optimistic? been a while ! how are you man? PM me I have some questions for you regarding Mr. Mahboubin just quickly lol! thanks

[ghkid2019]

Bumping an old thread. Optimistic1, you are truly amazing. Somehow you were in the depths of hell and even with non weight bearing nails precice 2 you still did quadrilaterals (at the same time!), got more than 5.5 inches, went to fk.ing work during distraction, ran your business, and didn't quit. My god this is an exemplar diary. Also shows how difficult quadrilaterals are, I could tell that you are a way above average PT and stretcher yet quadrilaterals was still too overwhelming for you. With this knowledge, im definitely not going to do simultaneous quads.

Bumping the golden threads.

If you want to update us Optimistic1, feel free. But I know you're living the life now- you probably shouldn't come back here, like many successful LL patients dont either. Amazing!