My Femur Stryde LL (with Dr. Debiparshad) diary

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Thanks Ghostfish, I sent you a pm can you check?

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Update: my PT doctor does not agree that the exercises suggested by ghostfish (btw these same exercises were also part of my previous last vegas PT's recommended exercises) here will help, he says that will make it worse, his opinion is I just have to survive this until it goes away on its own and he thinks stretching is actually counterproductive in initial stages of LL, in his opinion it (stretching) comes into play after you stop lengthening (and he gave some real solid logical explanation). So, now I am in BIG dilemma.

I have worked with 2 PTs and I cannot say any PT is bad because to speak the truth I have been and am doing fine under both PTs. one PT was was heavy on stretching (though also involved some strength building exercises) and my current PT is heavy on strength building on both upper body and knees (though also involves some stretching like touching the nose to table by bending etc.). The only point where both agree is - walking is good which I am doing a lot. what I want to see if which approach makes my LL journey easier. My immediate priority is to find some way  to recover from this hellish pain, it is only momentary , comes for a few seconds every time I make certain moves that involve right knee cap movement, it is so severe and brutal that I, who sometimes stays without pain medication for 20 hours (yes I did it and still could take the pain), never cried during last 35 days, have been crying when this pain hits me. I have already slowed down to 1 lengthening, no improvement yet, lets see if anything hppens in next 2-3 days. My current PT says it will go on its own with reduced lengthening no stretching needed and Ghostfish says stretching has something to do with it. so, good thing is starting from 8/28 to 2/9 I will be in vegas and will work with my earlier PT. Her PT was heavy on stretching - so I will be able to see how the vegas PT approach on my case. Last but not least - I would like to see what input dr D gives (besides reducing clicking). I am ok to survive the hell for 5-6 more days (has been 3-4 days already), but I do not buy the theory that it will eventually go away (eventually = 1 month, 1 year, 1000 years? when), so after 5-6 days from now if the pain does not go away or at least give sign of reducing - I will go to hospital emergency room and admit myself and cry and yell asking them to fix me , because I believe there is cure for everything.

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Hello.
I was wondering if  you practice bodybuilding before undergoingg this operation. I heard that practice bodybuilding and including leg strength regularly before the operation was a good way to get through the pain during ll.

And did you consider the possibility using this kind of electrostimulation device to deeply relax your muscles.
Or avoid it because you have an electromagnetic device in your legs.
Thanks and stay strong. All the best for your journey.

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https://www.google.com/search?q=compex&client=ms-android-wiko-rev2&prmd=sivn&source=lnms&tbm=isch&sa=X&ved=2ahUKEwi95IT946LkAhUDQxUIHYn5C0kQ_AUoAnoECA8QAg&biw=360&bih=592#imgrc=cy0gv4p5lE5MpM

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Quote from: Lalbadshah on August 27, 2019, 09:17:00 AMUpdate: my PT doctor does not agree that the exercises suggested by ghostfish (btw these same exercises were also part of my previous last vegas PT's recommended exercises) here will help, he says that will make it worse, his opinion is I just have to survive this until it goes away on its own and he thinks stretching is actually counterproductive in initial stages of LL, in his opinion it (stretching) comes into play after you stop lengthening (and he gave some real solid logical explanation). So, now I am in BIG dilemma.

I have worked with 2 PTs and I cannot say any PT is bad because to speak the truth I have been and am doing fine under both PTs. one PT was was heavy on stretching (though also involved some strength building exercises) and my current PT is heavy on strength building on both upper body and knees (though also involves some stretching like touching the nose to table by bending etc.). The only point where both agree is - walking is good which I am doing a lot. what I want to see if which approach makes my LL journey easier. My immediate priority is to find some way  to recover from this hellish pain, it is only momentary , comes for a few seconds every time I make certain moves that involve right knee cap movement, it is so severe and brutal that I, who sometimes stays without pain medication for 20 hours (yes I did it and still could take the pain), never cried during last 35 days, have been crying when this pain hits me. I have already slowed down to 1 lengthening, no improvement yet, lets see if anything hppens in next 2-3 days. My current PT says it will go on its own with reduced lengthening no stretching needed and Ghostfish says stretching has something to do with it. so, good thing is starting from 8/28 to 2/9 I will be in vegas and will work with my earlier PT. Her PT was heavy on stretching - so I will be able to see how the vegas PT approach on my case. Last but not least - I would like to see what input dr D gives (besides reducing clicking). I am ok to survive the hell for 5-6 more days (has been 3-4 days already), but I do not buy the theory that it will eventually go away (eventually = 1 month, 1 year, 1000 years? when), so after 5-6 days from now if the pain does not go away or at least give sign of reducing - I will go to hospital emergency room and admit myself and cry and yell asking them to fix me , because I believe there is cure for everything.
Hi Lalbadshah

I read your pm.  I think your current PT is wrong at least to some extent, since he has had experienced LL patients before you.  Focusing on building muscles or strength on the upper body is completely irrelevant to CLL, unless you really want to build your upper body muscle, which you can do it later anyway.   Building strength on your knees or legs could be helpful down the road.  I am quite certain your pain comes from the tightness of nerve or muscle.  Reducing the lengthening is the best to relax this tightness and the stretch is the second best way to loosen tightness.  But do not overdo stretching especially when you have pain.  Anyway, it is a dilemma for you due to different opinions between the two PTs.  But you need to know the PT in Las Vegas knows what is CLL and has worked for many LL patients.

No matter what, stay strong and positive.  You will be fine.  Your pain will be better as time goes by, as long as your problem arises from the tightness.

Good luck!

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update: i followed my instinct and did the stretching (the knee stretching recommended by ghostfish and that my old PT used to make me do) and also reduced lengthening to once a day and my situation is getting better, 10/10 pain came only 2 times (unlike 14-15 times on other days) today , but other times I am feeling like a 3.5/10 constant pain on knee cap (which was earlier not there), still this situation is better than earlier, so I will keep stretching and doing only one lengthening - for nxt 4-5 days, and I hope by then it is sorted/resolved.

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Update: in Las Vegas now, interestingly my las vegas PT also agrees with my San Jose PT and she also believes (unlike Ghostfish's opinion) that stretching has got noting to do with this knee cap pain issue (and at this point nobody has any explanation on reason of this pain). Though just like ghostfish's opinion she also feels I need to focus more on stretching for my tightness etc issues and we started new exercises for stretching to reduce thigh tightness and my penguin/duck kind of walk. I am and will wok on stretching but that is not what is stopping me from progressing further, it is the knee cap pain issue, anyway good news is it seems I am not the only one who experienced this issue, there are/were 3 current/past patients she has seen who had/are having experienced it and it seems in most (or maybe all) the right leg is the one giving the trouble (similar to my case), from what I understand they are also under reduced lengthening now and experiencing improvements. Anyway, the reduced clicking seems to be the only opinion all have and it seems to be working as of now, today I had no 10/10 pain at all, though there were many 5/10 burning sensation pains on right knee cap and muscles around especially during the the 1 hour plane journey , but things are improving for sure - my only worry is I hope it does not take too long to get resolved because I would like to go back to normal business (1mm a day) in next 4-5 days at least. Tomorrow I see Dr. D , lets see if he recommends anything else besides waiting out (with reduced lengthening) until this is completely gone. that aside, I started some new kind of PTs with the las vegas PT today, very interesting ones . Btw, I think in next 2 weeks I will be able to walk up stairs, the way my strength is building up (walking down I already can). Note: firs time in my LL journey i used heat therapy (recommended by PT) today and it worked very well, so advice for all - heat therapy/pad may work in pain situations, try it.

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This is a pretty brave experience. Doing LL by yourself and going to work in 3 weeks. It will be amazing to pull this off.

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Update: had my post op consult today with dr. D and staff. We all agreed that for the knee cap nerve pain I will keep doing one lengthening a day for 3-4 more days and hope issue get resolved completely. If issue gets resolved completely then I will g back to 1 mm  a day else if some issue still remains then I will do 2 sessions (.66 mm) a day. One session a day is not a long term solution because - i) consolidation will happen before reaching target height and ii) I dont want to drag LL things too long in my life , want to move on asap.
Good thing is that by ERC machine I am already 33 mm taller, by Ronnie's assessment based on X-ray around 40mm, so I will say my guess is I should be 35mm taller at least already, so - my plan is - i) if I go back to 1 MM then I will keep pushing for my target 65mm or at least 60mm but ii) if I reduce to 2 sessions (.66mm) I may actually shoot for only 15 mm more (total 2 inches), because before I started my jorney I new I wanted ideally 6.5 cm but will be content with 5.1 cm (2 inch) if things go tough. And anyway my aim was never to go huge on one segment but to do like 2.5 inches on femur and 2 inch on tibia. So. as long as I reach near to that I am ok, I want a few inches but nit make LL a BIG part/journey of my life. like 2 small phases (in life) of a few months each giving me like 2 inches, that is what I want.

yes Cena, it is difficult to do it alone, not impossible , but yes i agree it would be a new feat somebody doing it without any friend/family member/girlfriend support involved at all.

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Great diary Lalbadshah.

I have some questions can you answer what you are comfortable with?

1 How do you sit and get up from the toilet? Do you use a walker for support?
2 How have colleagues and managers reacted to your disability?
3 How do you get around in airport for walking long distances? Do you opt for wheelchair?
4 How do you carry backpack along with crutches or walker while walking to office from uber? you had asked this question but you did not tell how you resolved it.
5 what is the hardest thing you find to do on daily basis because of LL?

thank you