Quote from: Xander001 on September 13, 2019, 05:32:59 PMHey Tiggy,
Been lurking on your diary for a while. I'm usually not the type to post a response in a forum post, but I feel that I should since I'm also going through the same thing that you went through. I had my surgery back in June 2019. I had 0-1 level pain all the way through. My bottle of Oxy is still full. My case is pretty unique. I was able to walk unassisted a week after thanks to the Stryde nail and never really used my crutches around the house. I resumed working from home after 1 month. Everything went exceptionally well until my recent check-up with Dr. R. I'm currently at 56 mm distraction and the bone formation on my left leg is really lagging behind. Dr. R has me doing the accordion method and prescribed Strontium. Pretty much everything he prescribed you. This happened on Tuesday 9/10.
I have a question regarding you diet before the improvements. Were you eating enough? I noticed that I really haven't been eating. I think that could be causing the slow consolidation. I was 160 lbs. before the surgery and now I'm at 144 lbs. and seems to still be dropping. You also mentioned that R didn't want you to walk unassisted and that was interesting, because he told me I can walk as much as I can tolerate. If you have any tips on what you think you did during the 1 month of shortening and lengthening to help with bone growth, can you share with us?
Hey man,
I'm glad you've been following my diary. Your case seems to be very similar to mine. Well I made a whole bunch of changes, some of which I've already mentioned earlier. Just to reiterate, I had stopped ALL medication (even including finasteride for hair loss). I've just been taking, and still continue to take, vitamin d, c, strontium, and citracal. I also made sure to walk at least 10 minutes every hour (with a walker mostly) and consumed yoghurt and protein shakes. I can't say my improvement was spectacular but it was an improvement nonetheless. I am sure your bone growth is at a much better place than mine, hence why he told you that you can walk unassisted as tolerated. I assume this is the case because you had surgery a month after I did and you are almost at a similar distracted length to me. This tells me your growth has been doing fine up until now. I don't think you have much to worry about. Just walk as much as you can and I'm sure you ll be fine. Sometimes some of us take longer to fill the gap than others. This is why I try not to stress much about his advice to stop lengthening. Since my last follow up I haven't been walking as much as before, mainly because I am extremely busy with classes and studying. So it's tough for me to find time to break every hour to walk. So of course during my next follow up I expect growth to have slowed again (especially because I am lengthening now also). Just give it time and don't fret. May I ask how old you are? What's your goal?
Rozbruch- Internal Femurs with Stryde
Hey Tiggy,
Thanks for the reassurance. I'm 35 and my goal is to get at least three inches. Like you, I was pretty upset when R told me that I might need to rethink my goal. I've been trying to increase my food intake and will probably pick up a ton of yogurt tomorrow. I'm also on finasteride, did you find studies that suggest it may slow bone formation?
Quote from: Xander001 on September 14, 2019, 05:42:29 AMHey Tiggy,
Thanks for the reassurance. I'm 35 and my goal is to get at least three inches. Like you, I was pretty upset when R told me that I might need to rethink my goal. I've been trying to increase my food intake and will probably pick up a ton of yogurt tomorrow. I'm also on finasteride, did you find studies that suggest it may slow bone formation?
Hey,
No I haven't found any such studies. He also searched on his phone to see finasteride side effects and also found none relating to bone growth but I told him I'll stop for now just to be safe. It's not as if stopping for a month or so is going to make all my hair fall off lol.
The way I see my situation (and perhaps yours as well) and this is what I've stated to him also during my last follow up, is this: if I stop now and cut my goal short and assuming all heals well within months, I will regret not seeing my goal through. If I reach my goal now and give it time to heal, hopefully things may take let's say a month longer to fully heal but that is a sacrifice I am willing to take.
If after say 4 or 5 months post consolidation things don't heal very well, at that point I can have bone graft. It's not ideal of course but at least I'll know i gave this all I could and still reached my goal. If, in the unlikely case, my bone graft surgery isn't successful I can always shorten the gap (though this would require an additional surgery to accomplish). Either way it's not as if we don't have options here. In the end everything will work out. Plus even he said that none of his patients have ever had permanent nonunion that couldn't be fixed.
My larger point is, what guarantee do I have that if I stop at 7cm instead of 7.5 or 8 that my bone will heal completely. What if I still end up dealing with the same issues at 7cm that I would've dealt with had I gone all the way? None of course, this is unknowable. In the end I just want to play the hand I've been dealt and hope for the best. Plus I think the 1 cm difference isn't really going to make it or break it. Dr R is just extremely cautious, which is good but this is a matter of cost and benefit analysis. You may not share my sentiment but this is my outlook on the situation.
I am actually very curious if you had any luck with insurance coverage. Can you pm me (if you don't wish to discuss it publicly)?
How are you holding up tiggy? Did university start?
Quote from: cena on October 07, 2019, 04:53:25 PMHow are you holding up tiggy? Did university start?
Hi Cena,
Yes life is back in motion at full force and it doesn't ask whether you have 2 limbs broken lol. Anyway a quick update, I have reached 7.5cm as of a day or so ago. I was due for a follow up with dr R this week but I have decided to postpone my visit. Given that I have been lengthening all of last month I don't see the point in having X-rays taken at this time because they are unlikely to show much bone growth (if at all) since I was lengthening. I think it's best to see him in about 4 or 5 weeks to get a better idea of where things stand. Keep in mind that I pay him now during every visit.
In addition, I haven't been walking much lately. I felt no tightness at all when resuming lengthening but I do have pain and discomfort when I stand for too long and then sit down. It hasn't been all that pleasant to walk to say the least. However I hope that the legs start regaining strength within the next few weeks so that I am able to walk better and longer and with much less pain and discomfort. I think it's very important to stay active so I will most certainly pick up the pace of walking in the next few weeks.
I think that's about it re updates. I don't visit this forum very often now not only because of lack of time but also because once you put this surgery behind you it sort of defeats the need to visit. However I will continue my updates and will try to check my diary every week or two to make sure I answer questions. I actually wanted to take a photo of my X-rays during my visit and post it this week but given that I've postponed my appointment, I will do so after my next visit. Feel free to send questions my way, if any. Be well.
Good to know tiggy! So are you able to sit in class for hours?
And yes please show the xrays. It's strange how different stryde patients have different experiences. Movie climbs stairs unaided. Lalbadshah continued to go to work during lengthening. One other guy I forget also went to work as he walked while lengthening.
But it's always better to be safe! You do this only once (or twice)
Quote from: cena on October 09, 2019, 02:27:51 PMGood to know tiggy! So are you able to sit in class for hours?
And yes please show the xrays. It's strange how different stryde patients have different experiences. Movie climbs stairs unaided. Lalbadshah continued to go to work during lengthening. One other guy I forget also went to work as he walked while lengthening.
But it's always better to be safe! You do this only once (or twice)
Yes sitting in class isn't as bad as I thought it would be. After taking a month break from lengthening and then resuming, the body adjusts quite well to more lengthening. However toward the end the right leg was painful for about a few hrs post lengthening. When I say painful I mean like a 1-2 level pain. This would be annoying while driving and in class I would just lift my right leg on a chair next to me and the pain would ease up. I would just do that continuously until the discomfort was gone completely. So it wasn't a big deal and now that I'm done lengthening things should continue getting better daily. I don't have class until next wed so things should be much better by then.
In terms of climbing stairs, I am 5 months post op and I can't imagine doing so without holding on to the rails for my dear life. Yes I did take longer to lengthen than usual but I don't imagine finishing lengthening a month or so earlier would've made much of a difference in that regard. Also my bone regeneration is slow so that always plays a part. I imagine if my body was quick to heal the bone perhaps I could go up and down without any assistance. There are people who have bone regenerating very quickly and so for them this would be less of an issue.
Either way you wouldn't know in which group you belong and for this reason, while reading other people's progress may appear useful, at the end of the day it is really pointless. It doesn't matter how well or bad others do, its your ultimate progress that matters. And your progress to a large extent depends on factors out of your control. I understand the temptation to gather everyone's stats and timeframes of doing certain activities, I've done this myself. But my advice is to steer clear of that. Not only is it harmful in a sense that you may build up useless timeframes in your head, but it is also harmful because if you later find yourself lagging behind, it may start messing with your head and getting you frustrated and depressed.
My advice to you and others who haven't done this surgery is to use this site and gather info on pain management. That is the most important aspect because you will find very useful info for you down the line. And the 2nd way to utilize the site is to learn about daily activity management and what you can buy ahead of time to make the process easier on you, so things like a laptop stand for the bed or a stick you can use to pick things up with, etc. Everything else in my opinion should be disregarded (assuming you are well informed about the dr you end up choosing). I realize you didn't really ask for my advice lol but I still think wise minds would benefit. Take care.
Quote from: tiggy on October 09, 2019, 02:22:14 PMHi Cena,
Yes life is back in motion at full force and it doesn't ask whether you have 2 limbs broken lol. Anyway a quick update, I have reached 7.5cm as of a day or so ago. I was due for a follow up with dr R this week but I have decided to postpone my visit. Given that I have been lengthening all of last month I don't see the point in having X-rays taken at this time because they are unlikely to show much bone growth (if at all) since I was lengthening. I think it's best to see him in about 4 or 5 weeks to get a better idea of where things stand. Keep in mind that I pay him now during every visit.
If you just finished lengthening i really advice you to get that last xray to make sure both limbs lengthened the same and are even. Waiting 4-5 weeks only to find out you didnt lengthen the same would be bad. Stryde may be one of the best things right now but even the best things can mess up.
Just my opinion
Thanks for the advice tigyg. Much appreciated!
Quote from: Jim_dabarber on October 10, 2019, 12:39:09 AMIf you just finished lengthening i really advice you to get that last xray to make sure both limbs lengthened the same and are even. Waiting 4-5 weeks only to find out you didnt lengthen the same would be bad. Stryde may be one of the best things right now but even the best things can mess up.
Just my opinion
Good point. I've considered this. Even if there is a length discrepancy (and some discrepancy is fine I don't care if one leg is .5 mm longer or shorter because functionally this makes no difference) my right leg is healing quite slow so I can always adjust it up or down to be equal to the left leg. In 4 or 5 weeks I doubt my bones are going to consolidate quickly enough for this to be an issue and this is the reason why I'm even doing this to begin with. But thanks for sharing your thoughts! I only wish fast consolidation was the problem for me lol
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