Quote from: Optimistic1 on June 14, 2018, 03:53:45 AMUpdate:
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?
Bilateral Internal Tib/Fib and Bilateral Internal Femurs with Dr. Mahboubian.
Hey Optimistic, any updates?
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.
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.
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.
damn man! 166 to 180 cm must be huge. Are you worried about sitting height or were you just short legged?
Myositis ossification is fatal in 10% of cases:-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798355/
Another fatal side effect of cll.
Would you please ask dr. M for the same?
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
Quote from: totallyred on November 14, 2018, 05:15:43 AMMyositis 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
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