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Author Topic: Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.  (Read 6216 times)

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doomsday

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doomsday

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hey man how is your lengthening going?
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Optimistic1

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Re: Impressed by your resolve
« Reply #95 on: June 14, 2018, 03:07:07 AM »

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.
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Optimistic1

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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.
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Optimistic1

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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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Johnson1111

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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?
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